#first pharmacy said they never received approval from my doctor

[tittyinfinity]

It has been TWO AND A HALF WEEKS and my doctor still won't fucking get it together

[dc41896]

Random Act of Kindness

Prompt: Florian’s nice gesture for his girl doesn’t end the way he expects

Pairing: Florian MunteanuxBlack Reader

Warnings: None all fluff 💕

“I’m sorry ma’am, but it looks like your doctor hasn’t made the request for the medication to get refilled yet. We’ll try to call them again tomorrow tho-,”

“But I need that medicine now! I only have 2 pills left!,” the irate customer interrupted clearly not grasping what you were trying to explain.

“I understand the inconvenience you’re having, but as I said there’s nothing we can really do-,”

“No you don’t understand! Where’s your manager?”

“He’s just gonna tell you the same thing I just said!,” you thought to yourself before mentally taking a breath.

“I’ll go get him for you just give me a moment.”

Making your way to the back of the pharmacy, you receive a knowing look from your boss as he shakes his head clearly hearing what happened.

“Don’t worry, I’ll take care of Mrs. Henry you take a break. You deserve it,” he smiles before retreating to the front counter. Although at times you hated your job, mostly when you had to deal with angry customers, having an amazing boss who was heaven sent made things go by a little easier.

Finally able to sit down and take a few breaths, a vibration from your front pocket removes you from your temporary meditative state.

👅Muscles💪🏼: Hey babes😘! How’s everything?

Y/N: Hey love🥰😘! And honestly terrible, I’ve had 2 customers so far yell at me today for stuff that I clearly can’t control 🙃

Y/N: Definitely ready to go home lol

👅Muscles💪🏼: Aw I’m sorry, need me to come by🤨?

Y/N: Lol no babe it’s ok, but I appreciate the offer tho☺️! How’s everything with you today?

👅Muscles💪🏼: You’re welcome, you know I’m always a call/text away if you need 😉 and it’s alright. Still in training

👅Muscles💪🏼: Speaking of, my breaks over and coach is giving me “the look” lol so I gotta go. See you tonight, love you😘😘!!

Y/N: Lol ok see you then and love you too🥰😘😘😘!!

———

After hours of standing on your feet and a couple more disgruntled citizens later, you were glad to see the 4 walls of your loft apartment. So happy that you didn’t even make it to the living room; instead, sliding down the door as soon as you closed it with a content sigh.

“I hope you’re not planning on staying there all night,” Florian laughed squatting down in front of you in his usual grey sweats and black tee.

“I mean I wasn’t but my feet hurt so bad I don’t think I can make it to the room,” you pout, looking up at him with puppy dog eyes.

“I think I can help with that.”

Swiftly picking you up in his arms, he carries you upstairs to your bedroom before lightly tossing you on the bed and making you giggle.

“And for your Uber ride to the bedroom, that’ll be $40,” he jokes, taking off your sneakers and socks.

“Alright I’ll pay you back,” you laugh, wrapping your arms around his neck as you stood on your knees to kiss him.

“I know you had a rough day today, so you shower and get comfortable and meet me downstairs for your surprise.”

“Ohh surprise! Can I get a hint pretty please?”

“No you can’t, but you can see it as soon as you shower and get dressed,” he deeply chuckles, kissing your cheek as you poke your lip out not happy about having to wait to get your surprise.

Although you planned to shower quick so you could get to Florian and your surprise faster, your body had different plans once the hot water hit you. It seemed all the tension caused by the day started to melt away the longer you stood there letting droplets of water cascade down your body. And when the water hit your back?! That was another level of relaxation as the comfortable beating of the water felt like a mini massage, making you slowly breathe in and out.

Finally done with your shower, you walk downstairs in an old shirt of Florian’s and your pajama shorts to see your table nicely set, along with lit candles and flowers. Finishing his conversation with who you assumed was his parents, he places two plates down across from each other before extending his arms to show what he did.

“Surprise!”

“Aww babe, you made dinner?! And bought me flowers?,” you smile hugging him.

“Yea, I wanted to do something special for you not only because you had a bad day, but because I love you and hope you always know that.”

Standing on your tip toes, you wrap your arms around his waist as you kiss his lips. “Thank you babe, and trust me I know and I love my surprise and you so much!”

Pulling out your chair for you, you sit down peering into your steaming plate full of color from the different ingredients he used.

“It’s a traditional Romanian pasta dish with a side of mixed vegetables. Before you got home I FaceTimed mama to help me with it since we both know I’m not the best at cooking,” he explained with a smile. “Hopefully you like it!”

“I’m sure I will, it looks good and smells amazing!”

Taking a bite of the pasta, you let out a satisfied moan as you lightly nod your head giving him your seal of approval that it tasted good. Florian, meanwhile, quietly letting out a breath he was holding in, afraid that you wouldn’t like it or something worse happening.

Before you could take another bite, a sneeze creeps it’s way through your nose making you sniff before returning to your food. “Bless you, you’re not getting sick on me are you?”

“No I feel fine, it was just a lone one. Or possibly from the pepper,” you smile before continuing with dinner.

As you both ate, you talked about what happened today at the pharmacy and he told you about what the studio was making him do for his next role. You also asked him how mama and tata were doing, to which he answered they were fine and wanting the two of you to visit soon.

Both of you full from clearing your plates, and from also getting seconds, and in Florian’s case thirds, you got up to wash dishes thinking it’s only right since he did all the cooking and was probably tired. Turning the water off as soon as you cut it on, he lifts you up to place you on the counter next to him, apparently not letting you lift a finger today.

“I got this, you sit there and look pretty,” he winks scrubbing the first plate.

“But you cooked though and I know you’re tired from training earlier today, I can wash-,” you started before sneezing not once, but twice back to back.

“You sure you feel ok? You’ve sneezed a lot during dinner.”

“Yea I’m fine, if anything it might be allergies,” you sniff, well try to only to find that one nostril is blocked.

“What is going on with me?,” you thought pinching the bridge of your nose in hope of relief. Out the corner of your eye, you see the 3 vases filled with various flowers on the table.

“No no no!,” you spoke to yourself as you hopped off the counter, hoping what you were thinking wasn’t true.

“What? What’s wrong?!”

Searching through the flowers, you see the culprit for your sudden sneezing fit: purple aster. Although they were beautiful mixed in with bouquets, you were extremely sensitive to them and had been since you were little.

“It’s this purple aster. I’m allergic to it which is why I’ve been sneezing,” you answer, sneezing yet again.

“I’m so so sorry Y/N! Here let me get rid of them, you go lay down upstairs.” Not giving you a chance to respond, he leads you towards the stairs before returning back to the table to pick the aster out of one vase and search through the others just in case.

“It’s ok you didn’t kno-Flo! Put me down I’m ok!”

With you wiggling on his shoulder, he takes you upstairs, placing you on the bed yet again today.

“Please stay here so you don’t get worse or else I have no problem doing that again,” he jokingly warns before kissing your forehead and going back downstairs to finish cleaning up.

———

“Flo please don’t feel bad, I’ll be better tomorrow or the next day. This doesn’t last long,” you smile rubbing his stomach. After cleaning up the dishes, Florian joined you in bed, handing you a tissue whenever you needed as you snuggled into his side.

“I can’t help it though, if I knew you were allergic to those flowers I would’ve never bought them.”

“But you didn’t know, and it could always be worse! You could’ve given me peanuts-,”

“Wait you’re allergic to peanuts too?!,” he asks looking down at you worried.

“No! I’m not,” you answer laughing. Sitting up, you gently tilt his bearded chin so you could look into his eyes.

“I was just saying that things could’ve been worse so don’t beat yourself up about it. You didn’t know I was allergic to aster, but I’m not allergic to the other flowers you bought, which definitely made me feel better after a crappy day.”

“You sure? Seeing that now you can’t breathe?,” he asks with a raised eyebrow.

“Yes I’m sure,” you laugh snuggling up to him again before sneezing into your arm yet again. “And I’m also sure that I love everything you do for me no matter what the outcome is.”

“Aw thanks! I love you Y/N.”

“I love you too Flo,” you yawn before closing your eyes. Although he already knew you loved him, hearing you say that made him smile to himself as some of the guilt from earlier began to disappear.

Another quick idea I had (plus my allergies have been killing me lol), so I hope you guys like it!🤓

Taglist: @crushed-pink-petals @honeychicana @lady-olive-oil @themyscxiras @fumbling-fanfics @melinda-january @lovelymari4 @nunubug99 @felicity-x0 @ellixthea @jojolu @jnk-812 @brwn-sgr @captainsamwlsn @itshinothey @wildfirecracker @nina-sj

If anybody wants to be tagged, has asked to be tagged and don’t see your name, or only wants to be tagged for certain people I write for just let me know☺️!

[neshabeingchildish]

Poly, Wanna? Ch. 12

Since Tumblr is experiencing things... Idek if anybody will be able to see this. @chenoahchantel @adorkable-blackgirl @henry-p-fart @up-the-tube

I haven’t done this in a while, or for her yet, but I wanted to dedicate this chapter to lil’ mama Lizzie. Thank you for being a lil’ goofball source of goodness on a daily basis. Thanks for the group chat. I’m the oldest human there, but it’s such a good collection of good kiddos. 

Home

"Hi. I know that we can't really discuss the nature of the other work for the show but this confessional seat is pretty much where I've been laying down my burdens so that's what's going to happen today. I think I finally realized something about the workforce. One of the reasons that I haven't been able to stay in the labs, that I haven't been able to put up with a lot of the crap that they expect you to put up with..  I feel like it's mundane and not very direct results. Sure something that I work on right now may help somebody one day, but whenever I work here whatever mark that I did, helped someone THAT day. I was having adventures and making a difference in a pretty regular basis and the entire time, I was simply trying to get a paycheck and also help others. Now, the help that I give others is a slow process and the journey includes pompous, pretentious dudes that insist that they're better, smarter, and more experienced than you, therefore, you don't even always get approved to do the work that you COULD do. When I worked here, my supervisor encouraged me to test things out and he admitted that I'm smarter than him. I've been smarter than everyone that I've ever worked under… but Schwoz is the only person who's ever validated that fact. Whenever I worked here, it was like a family. It was a community. Out in my fields of study, it's always a competition and I'm always clipped at the knees while the big name boys get their headstarts, their funding, their approvals, their awards and recognition… but, I'm a grown woman. I have to decide if I wanna push harder and drain myself just to catch up with them, or stay out of the way. 

Singing in nightclubs and serving drinks isn't beneath me, but my parents are right about one thing… it isn't what I worked so hard for all of these years. So I could give up on my years of studying and work and just find something that I'm passionate about, or work hard to be the best, even on an unfair playing field..  but in the meantime I will be settling back in here. I just feel so at home…" 

Whenever Captain Man and Mr. Feelgood came down the tubes, Charlotte was in the control panel, with Schwoz behind her, talking. "And if I had access to it, my research would make him look like the 20th century scientific charlatan that he is!"

"I support this!" Schwoz cheered.

Henry leaned over the two of them. "What's going on?"

"Charlotte's going to use my resources to stick it to the Man!" Schwoz said. 

Captain Man wondered, "What did I do, now?"

"The industry, Ray. You’d be surprised to learn that even in the scientific community, where everyone is there to further humanity with knowledge, truth and solutions, a lot of them are grossly prejudiced and oppressive,” Schwoz said, thinking about his own run ins with American scientists who felt like he knew less because they weren’t familiar with his country or his accent.

“I wouldn’t be surprised that people who went into the kind of work that was advanced at the violation of numerous enslaved African peoples and their descendants, not to mention several Jewish people and other marginalized groups who have been used as lab rats and sometimes still aren’t given viable scientific solutions to their needs,” Captain Man said, with a shrug.

Feelgood raised an eyebrow and wondered, “What have YOU been reading?”

Captain Man answered, “This bizarre story about me that for some reason had all of these science facts in it. I didn’t really get it, but the photos were GREAT!” Feelgood noticed Charlotte hiding a smile and he just HAD to know more, but needed to blow this bubble first and get comfortable.

When he was Henry again, he beckoned to Ray with a hand, “Alright, Dude. Let me see this story you speak of.”

Ray pulled out his phone and showed Henry an archive. It took Henry all of 15 seconds to realize that these were simply scientific and social justice essays that somebody had peppered in numerous photos of “The Most Handsome Man in Swellview EVER” and given titles such as, “Scientific Racism is an Ugly Part of Our Practices, But Ray Manchester is the Opposite of Ugly.” “This is interesting. It seems like the kind of thing to have a niche market of JUST YOU.” Henry told him.

“I follow it,” Charlotte and Schwoz both said. Schwoz with a shrug, as thought he OBVIOUSLY would follow such a thing. Charlotte, with a smile, because Henry knew good and damn well that these were her words. She added, “Along with Miss Shapen, Nurse Cohort, Mrs. Dunlop, YOUR MOM…” She listed off subscribers. “Piper hate follows to put things in the comments like, “I once saw him fuss with a squirrel and taunt it by saying, ‘I’ve got some nuts for you to choke on!’ which, in 3 years’ time is still the top comment on any of the posts.”

Ray groaned, “I would be insulted, but I got several ‘Do you have any nuts for me to choke on?’ messages, so Piper lost again.” He finished with a smile and headed to the auto snacker for a bucket of fries.

“Why would someone do this?” Henry asked, trying to hand Ray his phone back, but eventually gave up because of the huge size of fries and just stuck it in his pocket.

“Maybe, someone knew that there are certain people who would only be willing to receive information from such a source,” Charlotte said. 

*Holds up photograph of Ray. “Basically, if you ever want Ray Manchester to pay attention to something, the best way is to put his photo onto it. It started as an experiment, to be honest. I was trying to do a paper on narcissism for a psychology credit, and was using him as a study. But, then, I realized that I could actually get him to LEARN THINGS that I would have had to either accept that he never would or browbeat into him in the past. Now, Ray can recite to you statistics of scientific racism and how the medical field still fails minorities to this day, among other very important topics that his brain might have previously shut out.”

*Ray speaking. “Everything as harmless as poor lighting and unflattering makeup selections while on screen, to things as dangerous as not being able to detect signs of skin cancer in brown skinned patients! Right there, next to my smiling face and luxurious skin!” *Shakes his head. “I can probably trust a makeup artist or a doctor to take care of me, but Charlotte and her really hot mom might not!” *Shakes his head. “This world. It’s ugly. But you know who’s not? This guy.” *Holds up an article with the title: This World, It’s Ugly. But You Know Who’s Not? This Guy, with a photo of a young Ray in a horse sweater. “I don’t know where this person gets all of these photos, (*whispers) but they’re all perfect.”

.

Jasper and Charlotte had discussed the letters from Henry and she decided that she wasn’t sure if she wanted to read them, but told Jasper that if he felt the need to do so, he should. She and Henry were getting along pretty well and she worried that reading things that she had decided to try to move past might damage that and stir up strife and trauma that she wasn’t interested in. “If I were to say that I’m not curious about what Henry had to say for apparently 467 days, that would be an enormous lie. But, I’m also terrified of what finding out some of that might do to us. Jasper thinks that it needs to be done now, while everything is still new and fresh and it can’t hurt later. But… It can’t hurt later if he just burns them now, either.” *Shrugs her shoulders.

Charlotte still had leave of absence time from the doctor, even though she was fine, thanks to Schwoz. So, whenever Jasper and Henry were away, she was usually making herself pretty much at home and making the space a little more compatible with her. They hadn’t talked moving in together or anything, but… she hadn’t left yet and Jasper kept bringing more of their things over with each night that they spent there. She would chill in the Man Cave with Ray and Schwoz, work on her project that Schwoz was helping out with and back him up whenever the heroes got an alert. But, if Jasper was available, she spent her free time with him. And if the three of them were free, they spent that time together. The only times that she was with Henry alone was at night, when Jasper was bartending, on those nights that Swellview didn’t need their hero.

That was when the conversation came up again, “Are you ever gonna read them?” He wondered. She tensed up at the question, but blinked shortly afterwards and stared at him. He had been giving her a pedicure (since hers hadn’t gotten done at the spa that day) and he still felt bad about that. Plus, he had hella products for that at home. Between the two of them - her holistic healthcare and organic, natural, DIY beauty care, and his high maintenance grooming and wellness… This place was an apothecary, pharmacy, spa, gym… He’d even started making certain that he got handcrafted beers shipped in, since he knew that was what Jasper preferred to drink and he really wanted both of them to kinda… never wanna leave.

“How important is it to you that I read those letters? Are they worth my current peace of mind? Are they worth our current connection?” She asked.

He squeezed her foot affectionately and kissed it, “Nothing is worth that. I just didn’t know it NOT reading them would possibly risk that as well, perhaps?”

She sighed. “I don’t know. I’m not crazy about change. Things are already in the process of changing, but this change seems good. Do you think that whatever I read there would be a change for the better? Would it improve what is already happening, in any way? Or, do you just want me to have to know what you were going through while I was going through what I was going through, because I refused to grant you that attention whenever I was going through it?” Her foot was rested against his chest and he was stroking it lovingly, absentmindedly. She pulled it away gently and she shrugged his shoulders. “Well, when you can answer me that, I can answer your question. For right now, the answer is that I don’t want to do it. I can’t see how it would help anything.”

“I respect that.”

“I actually hate it.” - Henry

.

Jasper got home anywhere from 3-4:30 am, depending on how busy the lounge was or how much cleaning up he had to do. Usually, whenever he got home, Charlotte was asleep. Henry had a habit of waiting up for him. It was hard for him to sleep whenever he didn’t know that Jasp was home safe and staying awake made him less tired than interrupted sleep did. Charlotte sometimes slept in her bed, whenever she wanted to be immersed in her sleeping experience, unbothered and Jasper would join her whenever he got home. (His room was currently where he and Charlotte’s clean, but not folded laundry and other unpacked stuff was being stored. They lived in her room and visited Henry’s as frequently as though it were their own. 

His favorite nights were those when Charlotte didn’t necessarily want to be alone and slept in his bed. He still waited up for Jasper, but sometimes, she cuddled against him and went to sleep on him while he waited and played video games or watched something. Whenever Jasper would get home, Henry would be ready for bed and Jasper would generally wash up and come into bed, being the one who got to decide their placement for the night. Would he be in the middle? Would Henry? Would Charlotte? Whatever he chose, Henry was always happy, because they were both still there. 

Then there were the times that they were all home at night and got to settle into bed together! Rarely did one of the others suggest just going to their own room tonight, if all of them were there. They just went into Hen’s like it was the most natural thing in the world for all of them to be in bed together, sleeping and cuddled up - some nights just awake, talking in the candlelight until someone fell to sleep first and the other two gushed over them quietly. 

Actually, now that Henry thought about it… he had a different type of favorite night. Those nights whenever he had to leave for a mission before anybody went to bed, or when nobody else was there, and he came home, tired, weary, sore, etc… and they were both waiting for him. Either awake and worried because the mission seemed serious, or asleep in his bed, figuring that they would have been alerted if it had been something to worry about. 

Whenever he came home from a night of work and soothed away his pain and problems in a hot shower, knowing that within moments he could lay his head on a pillow or a person that he loved very much… ugh. Priceless.

.

Henry came into the dining room, from sessions in his office, to find Jasper at the table, with his letters, doing something with them. He didn’t want to interrupt… But, he appeared to possibly be destroying them and it was reflexive. “What are you doing?” He snapped. Jasper jumped and was clearly startled and taken back for a moment. Henry noticed, felt terrible, and calmed down. “Sorry, didn’t mean to startle you.” Softer, he wondered, “What are you doing, there?”

Jasper’s hands shook a little and he set a letter down in a stack, face down and said with a low voice, “Organizing these for Charlotte.”

“What do you mean organizing? They were dated and in order. Did you like drop the stack, or something?”

“No, Henry. I didn’t. I thought that you said these belonged to us, now?”

“I did. They do. I’m just curious.”

“If you must know, I’ve separated them into categories. These are angry. These are sad. These are blunt and realistic. These are the ones that are the sweetest. They’re going into this scrapbook that I’m making for Charlotte. These other ones are going to be possibly shelved, possibly explored at her convenience. She’ll likely want to get into a certain headspace, cleanse them of their energy and ground herself before attempting to look at them. I don’t want her triggered whenever she tries to!” His voice got louder as he explained, until he was almost yelling. He rolled his eyes at Henry and began to collect his stuff.

“Where are you going?”

“Where you aren’t gonna come fussing at me just because Charlotte’s not around.”

“That’s not what I… Jasper, I’m sorry. I didn’t mean to sound like I was fussing. Thank you for doing this. It’s so thoughtful and sweet. Charlotte is lucky to have you.”

“Yep,” Jasper said, angrily and kept going.

“Where is she, anyway?” 

“In the Man Cave. Go spin this however you need to.”

“I’m not…” Henry rubbed his eyes, frustrated as Jasper went into his room and slammed the door. 

“I can only guess that he recently read Day 273 recently…”

*Jasper taking deep breaths and clenching the air in front of his face to strengthen and center himself, then clears his throat. “Day 273. Dear Charlotte, I feel like I shouldn’t write that I love you anymore. I feel like I maybe should stop this altogether. Jasper and I are getting closer than I expected and it is starting to scare the hell out of me. I found myself wishing that I had you around to talk to about it. I found myself questioning if I was moving on from you and wondering if I should. Jasper is great. He’s everything right in the world and he seems to be really into me. I wish that I could love him, but I feel like I’d be betraying you again. Which… That’s hella stupid, right? We’re fucking. That’s betrayal, right? Or, is it okay, because I never really had feelings for him? He told me that he loves me recently. I told him that I love him too. I didn’t mean it like that, but I didn’t really wanna get into it. I would feel so much better if I thought that I could have your blessing. I know that it hurts him the way that I never quite let him in, but I can’t help it. It always feels like he’s trying to take your place, but I don’t want anybody else to take that place. Not even Jasper. I care about him, but… He’s just not you, never will be, and I don’t know if I could ever see him the way he wants me to, because I don’t know how low that would be of a blow to you. He said that you’ve cut him out now, too. I guess after 3 months of fucking your ex he felt obliged to share that info with you. I already feel like you probably hate me more. If you didn’t feel some type of way about it, you wouldn’t have blocked him. You still care! And knowing that, I just… I can’t move on. I’m not gonna say that I love you anymore. But, I know that you care..” *Slams down the paper into the “blunt and realistic” stack.

Henry came to the Man Cave and Charlotte was looking at her phone, and seemingly about to go - wrapping things up with Schwoz. “Hey, can I talk to you for a sec?” He wondered. 

She sighed and shook her head, “I’m sorry, Henry. I have to go see about Jasper.”

“I figured. I just wanted to say…”

“Say it on the way, Dude. Booty Bear is having a meltdown. What happened?”

“I think it's the letters. One in particular…” Henry said and ran a hand through his hair. “There was a time, about six months in when I was thinking about giving me and Jasper an actual try and I wrote to you about it, but basically decided not to.”

“This is why I don’t really understand WHY those letters ever had to leave your goddamn possession!” She fumed and shook her head as they got on the elevator. “Why would ever hand him something like that?”

“I figured it was better for it to happen now than it come out later somehow and what happened with you happened with him, or with both of you. I… am trying to hard to get everything out in the open and clarified and comprehended. We can’t ever become, if we don’t deal with the shit.” He fought to not cry. The last time he cried when he didn’t have a right, it only pissed her off. He shook his head and whispered, “I almost fucking died. I still have scars from that night. I still have nightmares sometimes. And, even though I was hostage for all those hours and ultimately had to fucking kill someone…”He clenched his fists, “That wasn’t the worst part of the night.” He started laughing and turned to face the wall, because he knew that the tears were coming. 

“Hen…”

“No. Sorry… I just… Go, um… Go make sure he’s okay. Tell him I’m sorry and I love him, K?” She rubbed Henry’s chest and nodded, then pulled him in for a hug. The elevator doors opened and Jasper was standing there. He slumped his shoulders and sighed. Charlotte patted Henry on the back and got off to check on Jasper. Henry went back down.

“I coulda done without seeing that today,” Jasper admitted.

“Yeah. I coulda done without you actually reading those stupid letters, but Henry said something that made me… give pause. I’ve been thinking that this was so important to him because I never let him tell me how he felt. Do you think maybe it’s so important to him because now that he’s said it, he doesn’t want it to seem like secrets that he’s keeping from us? He doesn’t want another night like that night… and I never knew how bad it had been for him. I never gave him a chance to speak. I was so done that I didn’t even think about what he’d been through. I didn’t even weigh it out against what I was feeling. I was so hurt…”

“You had every right to be hurt. You had every right to feel how you felt and do what you did, Charlotte. And, you’ve had no real reason to give him another chance, but here we are, seemingly doing just that. We’re… in a relationship with him. You realize that, right? It’s like the one that I had with him, where shit is really not spoken about and a little unclear, but we all know good and goddamned well that it’s a thing that’s happening. I just… Do you think that I’m here because he wants you and he knows he has to have me as part of the package? Do you think that he… Do you think that he could ever love me anywhere near the level that he loves you?” Jasper’s eyes were watery.

“Yeah. I think that he does love you that much. I think that those letters are a part of his past. I think that how he hurt you is a part of your past. I think that my anger at him is a part of my past. They’re parts that we have to fucking figure out, J. But… They’re the past, still. He told me himself he’s sorry and he loves you. Look. Let’s do this… Let’s… take those letters that both of you have been obsessed with for the past couple of weeks and let’s just… figure out at least those parts together. The three of us. How does that sound?”

“You said that you didn’t want to do that. You didn’t want to stir up any bad emotions. I don’t want you to do that for me, Charlotte.”

“Well… I don’t want to do it, but I know that I have to. For us.”

He took her into a hug. “You’re always gonna love me, even if it turns out that he doesn’t, right? And if I feel heartbroken by that, you won’t be mad and me and will know that it doesn’t mean that I don’t love you, right?”

“Absolutely.”

“Okay. Thank you. Henry snapped at me tonight and I just… I’d already been transported to that time with the letters and hearing him speak to me harshly just took me deeper in. He can’t talk to me like that.”

“He sure can’t and I’m gonna give him a piece of my mind about it, too! Then, we’re all gonna detox, okay?” Jasper nodded. She kissed him on the cheek and texted Henry.

Come home now. We all gotta talk.

[billysjoel]

I haven’t been very active in the last couple days and I just wanted to update everyone as to why.

If you don’t already know, I was diagnosed with psoriatic arthritis, an autoimmune disorder, earlier this year and have since been trying different medications to see what will work best. I tried a combination of prednisone and methotrexate. The prednisone was the only thing that worked there, but that wasn’t a long term solution. From there, I moved onto Humira and had my first experience with an auto-injector. Once I got past the initial terror, I actually didn’t mind it too much. But it was inadequate.

At my last rheumatologist appointment, my doctor and I decided I would try Enbrel next. Yesterday, I found out through a letter from my pharmacy that Enbrel was denied by my insurance because I haven’t tried one of a list of other drugs first. This was nearly two weeks after my last appointment. I had been told to expect a call within a week from my doctor’s office and I did not receive one. So I called yesterday and was told that they sent in a prescription for Cimzia. Not only was I not called back and not made aware that this new prescription was sent in and subsequently approved, Cimzia was not ever even mentioned to me by my rheumatologist. I knew nothing about the drug.

One of my doctor’s nurses called me back to give me the information about Cimzia. I was already feeling frustrated and overwhelmed, but when she told me that it was a pre-filled syringe and not an auto-injector, I lost it on the phone. I started bawling my eyes out and everything from the past week came out on the phone. I apologized to the nurse and told her that I was very frustrated by all this and that Cimzia was not even discussed. I also expressed my concerns that one of the side-effects could lead to developing any host of nervous system problems, namely MS - which my dad has. That was a red flag for me, so she told me she’d talk to my doctor and call me back.

She called back and told me that I should only be concerned if I personally had MS - I don’t right now, but I do have an increased risk because my dad has it. I again stated that I really didn’t want to do a self-injection and that driving 50 minutes and paying for injection training was not feasible and not something I am at all comfortable with. I said I would rather try the drug we actually had discussed that was an infusion once every eight weeks.

In between those two phone calls, I broke down no less than three times. At work. My coworkers were amazing and really helpful - especially since one of them also has MS. My parents have also been a huge help in getting me through all this scary medical bullshit. But even with all that, I still felt so scared and so helpless and the whole day was just a nightmare.

The same nurse called me back this morning on my way to work and said I can try Cosentyx or Xeljanz. The former is an auto-injector and the latter a tablet. I want to try Cosentyx first so they’re starting the insurance crap and I should expect a call within a week (I’ll be calling if I don’t hear anything by next Tuesday, not waiting two weeks again). I am now three weeks out from my last Humira dose - I still have a couple pens, but I also have to wait two weeks from my last dose before starting a new drug. I’d rather just try and hold out until I can get something new.

Today was a much better day since getting that news, I had a good day at work, and my parents are just fucking amazing. They came over to bring me a cabinet they’re giving me and we watched a movie and then they took all my garbage out for me. It’s been quite a while since I’ve last taken out garbage because depression and I was sick last week. They’re really amazing and supportive.

Last but not least, I received my PERMANENT disabled parking permit in the mail today! My doctor told me they might just issue a temporary one, but the relief I felt upon seeing that blue card was another weight off my shoulders.

So I’m really hoping that things are looking up - I’m gearing up for Christmas as I’m hosting this year for the first time. I’m trying to break down my tasks into smaller more manageable pieces rather than letting everything at home build up until I panic and it feels impossible. My project for tomorrow is hanging and folding all the clothes I haven’t folded or hung for the last several weeks. Pain-wise, I feel like I’ve actually been doing better the last few days. I was so bummed that Humira didn’t work because it helped my foot a lot, but my hands got so bad starting in October it was impossible some days to even type this much. And as a salesperson, I never want to shy away from a customer’s handshake, but on a bad hand day, shaking hands is one of the most painful actions I can do because of where the pain in my hand is. I know I’ll have good days and bad days, but the bad days have felt so much more common lately. Anyway, this is a very long, rambly post, but I just wanted to get it out there. If any of this talk bothers you or you just don’t want to see it, feel free to blacklist “psa” which is what I tag all of my spoonie-related posts and reblogs as (PsA stands for psoriatic arthritis).

[stephenmccull]

Seniors Face Crushing Drug Costs as Congress Stalls on Capping Medicare Out-Of-Pockets

This story also ran on Fortune. It can be republished for free.

Sharon Clark is able to get her life-sustaining cancer drug, Pomalyst — priced at more than $18,000 for a 28-day supply — only because of the generosity of patient assistance foundations.

Clark, 57, a former insurance agent who lives in Bixby, Oklahoma, had to stop working in 2015 and go on Social Security disability and Medicare after being diagnosed with multiple myeloma, a blood cancer. Without the foundation grants, mostly financed by the drugmakers, she couldn’t afford the nearly $1,000 a month it would cost her for the drug, since her Medicare Part D drug plan requires her to pay 5% of the list price.

Every year, however, Clark has to find new grants to cover her expensive cancer drug.

“It’s shameful that people should have to scramble to find funding for medical care,” she said. “I count my blessings, because other patients have stories that are a lot worse than mine.”

Many Americans with cancer or other serious medical conditions face similar prescription drug ordeals. It’s often worse, however, for Medicare patients. Unlike private health insurance, Part D drug plans have no cap on patients’ 5% coinsurance costs once they hit $6,550 in drug spending this year (rising from $6,350 in 2020), except for very low-income beneficiaries.

President-elect Joe Biden favors a cap, and Democrats and Republicans in Congress have proposed annual limits ranging from $2,000 to $3,100. But there’s disagreement about how to pay for that cost cap. Drug companies and insurers, which support the concept, want someone else to bear the financial burden.

That forces patients to rely on the financial assistance programs. These arrangements, however, do nothing to reduce prices. In fact, they help drive up America’s uniquely high drug spending by encouraging doctors and patients to use the priciest medications when cheaper alternatives may be available.

Growing Expense of Specialty, Cancer Medicines

Nearly 70% of seniors want Congress to pass an annual limit on out-of-pocket drug spending for Medicare beneficiaries, according to a KFF survey in 2019. (KHN is an editorially independent program of KFF.)

The affordability problem is worsened by soaring list prices for many specialty drugs used to treat cancer and other serious diseases. The out-of-pocket cost for Medicare and private insurance patients is often set as a percentage of the list price, as opposed to the lower rate negotiated by insurers.

For instance, prices for 54 orally administered cancer drugs shot up 40% from 2010 to 2018, averaging $167,904 for one year of treatment, according to a 2019 JAMA study. Bristol Myers Squibb, the manufacturer of Clark’s drug, Pomalyst, has raised the price 75% since it was approved in 2013, to about $237,000 a year. The company believes “pricing should be put in the context of the value, or benefit, the medicine delivers to patients, health care systems and society overall,” a spokesperson for Bristol Myers Squibb said via email.

As a result of rising prices, 1 million of the 46.5 million Part D drug plan enrollees spend above the program’s catastrophic coverage threshold and face $3,200 in average annual out-of-pocket costs, according to KFF. The hit is particularly heavy on cancer patients. In 2019, Part D enrollees’ average out-of-pocket cost for 11 orally administered cancer drugs was $10,470, according to the JAMA study.

The median annual income for Medicare beneficiaries is $26,000.

Medicare patients face modest out-of-pocket costs if their drugs are administered in the hospital or a doctor’s office and they have a Medigap or Medicare Advantage plan, which caps those expenses.

But during the past several years, dozens of effective drugs for cancer and other serious conditions have become available in oral form at the pharmacy. That means Medicare patients increasingly pay the Part D out-of-pocket costs with no set maximum.

“With the high cost of drugs today, that 5% can be a third or more of a patient’s Social Security check,” said Brian Connell, federal affairs director for the Leukemia & Lymphoma Society.

This has forced some older Americans to keep working, rather than retiring and going on Medicare, because their employer plan covers more of their drug costs. That way, they also can keep receiving financial help directly from drugmakers to pay for the costs not covered by their private plan, which isn’t allowed by Medicare.

‘This Is a Little Nuts’

All this has caused financial and emotional turmoil for people who face a life-threatening disease.

Marilyn Rose, who was diagnosed with chronic myeloid leukemia three years ago, until recently was paying nothing out-of-pocket for her cancer drug, Sprycel, which has a list price of $176,500 a year. That’s because Bristol Myers Squibb, the manufacturer, paid her insurance deductible and copays for the drug.

But the self-employed artist and designer, who lives in West Caldwell, New Jersey, recently turned 65 and went on Medicare. The Part D plan offering the best deal on Sprycel charges more than $10,000 a year in coinsurance for the drug.

Rose asked her oncologist if she could switch to an alternative medication, Gleevec, for which she’d pay just $445 a year. But she ultimately decided to stick with Sprycel, which her doctor said is a longer-lasting treatment. She hopes to qualify for financial aid from a foundation to cover the coinsurance but won’t know until sometime this month.

“It’s just strange you have to make a decision about your treatment based on your finances rather than what’s the right drug for you,” she said. “I always thought that when I get to Medicare age I’ll be able to breathe a sigh of relief. This is a little nuts.”

Given the sticker shock, many other patients choose not to fill a needed prescription, or delay filling it. Nearly half of patients who face a price of $2,000 or more for a cancer drug walk away from the pharmacy without it, according to a 2017 study. Fewer than half of Medicare patients with blood cancer received treatment within 90 days of their diagnosis, according to a 2019 study commissioned by the Leukemia & Lymphoma Society.

“If I didn’t do really well at scrounging free drugs and getting copay foundations to work with us, my patients wouldn’t get the drug, which is awful,” said Dr. Barbara McAneny, an oncologist in Albuquerque, New Mexico, and past president of the American Medical Association. “Patients would just say, ‘I can’t afford it. I’ll just die.’”

The high drug prices and coverage gaps have forced many patients to rely on complicated financial assistance programs offered by drug companies and foundations. Under federal rules, the foundations can help Medicare patients as long as they pay for drugs made by all manufacturers, not just by the company funding the foundation.

But Daniel Klein, CEO of the PAN Foundation, which provides drug copay assistance to more than 100,000 people a year, said there are more patients in need than his foundation and others like it can help.

“If you are a normal consumer, you don’t know much about any of this until you get sick and all of a sudden you find out you can’t afford your medication,” he said. Patients are lucky, he added, if their doctor knows how to navigate the charitable assistance maze.

Yet many don’t. Daniel Sherman, who trains hospital staff members to navigate financial issues for patients, estimates that fewer than 5% of U.S. cancer centers have experts on staff to help patients with problems paying for their care.

Sharon Clark, who struggles to cover her cancer drugs, works with the Leukemia & Lymphoma Society counseling other patients on how to access helping resources. “People tell me they haven’t started treatment because they don’t have money to pay,” she said. “No one in this country should have to choose between housing, food or medicine. It should never be that way, never.”

This article is part of a series on the impact of high prescription drug costs on consumers made possible through the 2020 West Health and Families USA Media Fellowship.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation which is not affiliated with Kaiser Permanente.

USE OUR CONTENT

This story can be republished for free (details).

Seniors Face Crushing Drug Costs as Congress Stalls on Capping Medicare Out-Of-Pockets published first on https://smartdrinkingweb.weebly.com/

[gordonwilliamsweb]

Seniors Face Crushing Drug Costs as Congress Stalls on Capping Medicare Out-Of-Pockets

This story also ran on Fortune. It can be republished for free.

Sharon Clark is able to get her life-sustaining cancer drug, Pomalyst — priced at more than $18,000 for a 28-day supply — only because of the generosity of patient assistance foundations.

Clark, 57, a former insurance agent who lives in Bixby, Oklahoma, had to stop working in 2015 and go on Social Security disability and Medicare after being diagnosed with multiple myeloma, a blood cancer. Without the foundation grants, mostly financed by the drugmakers, she couldn’t afford the nearly $1,000 a month it would cost her for the drug, since her Medicare Part D drug plan requires her to pay 5% of the list price.

Every year, however, Clark has to find new grants to cover her expensive cancer drug.

“It’s shameful that people should have to scramble to find funding for medical care,” she said. “I count my blessings, because other patients have stories that are a lot worse than mine.”

Many Americans with cancer or other serious medical conditions face similar prescription drug ordeals. It’s often worse, however, for Medicare patients. Unlike private health insurance, Part D drug plans have no cap on patients’ 5% coinsurance costs once they hit $6,550 in drug spending this year (rising from $6,350 in 2020), except for very low-income beneficiaries.

President-elect Joe Biden favors a cap, and Democrats and Republicans in Congress have proposed annual limits ranging from $2,000 to $3,100. But there’s disagreement about how to pay for that cost cap. Drug companies and insurers, which support the concept, want someone else to bear the financial burden.

That forces patients to rely on the financial assistance programs. These arrangements, however, do nothing to reduce prices. In fact, they help drive up America’s uniquely high drug spending by encouraging doctors and patients to use the priciest medications when cheaper alternatives may be available.

Growing Expense of Specialty, Cancer Medicines

Nearly 70% of seniors want Congress to pass an annual limit on out-of-pocket drug spending for Medicare beneficiaries, according to a KFF survey in 2019. (KHN is an editorially independent program of KFF.)

The affordability problem is worsened by soaring list prices for many specialty drugs used to treat cancer and other serious diseases. The out-of-pocket cost for Medicare and private insurance patients is often set as a percentage of the list price, as opposed to the lower rate negotiated by insurers.

For instance, prices for 54 orally administered cancer drugs shot up 40% from 2010 to 2018, averaging $167,904 for one year of treatment, according to a 2019 JAMA study. Bristol Myers Squibb, the manufacturer of Clark’s drug, Pomalyst, has raised the price 75% since it was approved in 2013, to about $237,000 a year. The company believes “pricing should be put in the context of the value, or benefit, the medicine delivers to patients, health care systems and society overall,” a spokesperson for Bristol Myers Squibb said via email.

As a result of rising prices, 1 million of the 46.5 million Part D drug plan enrollees spend above the program’s catastrophic coverage threshold and face $3,200 in average annual out-of-pocket costs, according to KFF. The hit is particularly heavy on cancer patients. In 2019, Part D enrollees’ average out-of-pocket cost for 11 orally administered cancer drugs was $10,470, according to the JAMA study.

The median annual income for Medicare beneficiaries is $26,000.

Medicare patients face modest out-of-pocket costs if their drugs are administered in the hospital or a doctor’s office and they have a Medigap or Medicare Advantage plan, which caps those expenses.

But during the past several years, dozens of effective drugs for cancer and other serious conditions have become available in oral form at the pharmacy. That means Medicare patients increasingly pay the Part D out-of-pocket costs with no set maximum.

“With the high cost of drugs today, that 5% can be a third or more of a patient’s Social Security check,” said Brian Connell, federal affairs director for the Leukemia & Lymphoma Society.

This has forced some older Americans to keep working, rather than retiring and going on Medicare, because their employer plan covers more of their drug costs. That way, they also can keep receiving financial help directly from drugmakers to pay for the costs not covered by their private plan, which isn’t allowed by Medicare.

‘This Is a Little Nuts’

All this has caused financial and emotional turmoil for people who face a life-threatening disease.

Marilyn Rose, who was diagnosed with chronic myeloid leukemia three years ago, until recently was paying nothing out-of-pocket for her cancer drug, Sprycel, which has a list price of $176,500 a year. That’s because Bristol Myers Squibb, the manufacturer, paid her insurance deductible and copays for the drug.

But the self-employed artist and designer, who lives in West Caldwell, New Jersey, recently turned 65 and went on Medicare. The Part D plan offering the best deal on Sprycel charges more than $10,000 a year in coinsurance for the drug.

Rose asked her oncologist if she could switch to an alternative medication, Gleevec, for which she’d pay just $445 a year. But she ultimately decided to stick with Sprycel, which her doctor said is a longer-lasting treatment. She hopes to qualify for financial aid from a foundation to cover the coinsurance but won’t know until sometime this month.

“It’s just strange you have to make a decision about your treatment based on your finances rather than what’s the right drug for you,” she said. “I always thought that when I get to Medicare age I’ll be able to breathe a sigh of relief. This is a little nuts.”

Given the sticker shock, many other patients choose not to fill a needed prescription, or delay filling it. Nearly half of patients who face a price of $2,000 or more for a cancer drug walk away from the pharmacy without it, according to a 2017 study. Fewer than half of Medicare patients with blood cancer received treatment within 90 days of their diagnosis, according to a 2019 study commissioned by the Leukemia & Lymphoma Society.

“If I didn’t do really well at scrounging free drugs and getting copay foundations to work with us, my patients wouldn’t get the drug, which is awful,” said Dr. Barbara McAneny, an oncologist in Albuquerque, New Mexico, and past president of the American Medical Association. “Patients would just say, ‘I can’t afford it. I’ll just die.’”

The high drug prices and coverage gaps have forced many patients to rely on complicated financial assistance programs offered by drug companies and foundations. Under federal rules, the foundations can help Medicare patients as long as they pay for drugs made by all manufacturers, not just by the company funding the foundation.

But Daniel Klein, CEO of the PAN Foundation, which provides drug copay assistance to more than 100,000 people a year, said there are more patients in need than his foundation and others like it can help.

“If you are a normal consumer, you don’t know much about any of this until you get sick and all of a sudden you find out you can’t afford your medication,” he said. Patients are lucky, he added, if their doctor knows how to navigate the charitable assistance maze.

Yet many don’t. Daniel Sherman, who trains hospital staff members to navigate financial issues for patients, estimates that fewer than 5% of U.S. cancer centers have experts on staff to help patients with problems paying for their care.

Sharon Clark, who struggles to cover her cancer drugs, works with the Leukemia & Lymphoma Society counseling other patients on how to access helping resources. “People tell me they haven’t started treatment because they don’t have money to pay,” she said. “No one in this country should have to choose between housing, food or medicine. It should never be that way, never.”

This article is part of a series on the impact of high prescription drug costs on consumers made possible through the 2020 West Health and Families USA Media Fellowship.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation which is not affiliated with Kaiser Permanente.

USE OUR CONTENT

This story can be republished for free (details).

Seniors Face Crushing Drug Costs as Congress Stalls on Capping Medicare Out-Of-Pockets published first on https://nootropicspowdersupplier.tumblr.com/

[solarbird]

Old Soldiers, Chapter 17: do not hold any of it back

I'm writing this thing and even I'm being surprised at how much Pharmacy milage is in this chapter.

[AO3 link]

Fareeha read the letter again, face grim, shaking a little, enraged. How dare she. How dare she?!

"Angela! Come here, please!" she called into the other room. This will have to go to all of Overwatch, but... she should know, first.

"Fareeha? Are you all right? You sound..." Her wife leaned around the doorframe and saw that, in fact, her wife was tightly, rigidly angry. "Oh, no. What is it, liebchen?"

"Come here, and hold me, while you read this."

Angela stepped quickly forward to the flying agent's chair and wrapped her arms around her neck, reading over her shoulder. "...I... I... this has to go to the entire team."

"I know. I wanted you to see it first."

"Do not hold any of it back, send it unedited."

"That is not why." The Egyptian turned in her chair to face her wife. "I've decided. I will do it. I want to do it, now. How long will it take to prepare a set of nanites for me?"

Angela gasped, and covered her mouth with her left hand, her heart leaping, and she stepped half a step back, then threw herself around her wife, holding her tight, so tight, so unready for that declaration. "I... That is not the reaction I..."

Fareeha held her wife gently, pulling her head against her strong shoulders, her eyes closed, brushing her fingers through her wife's hair. "I know."

"But... why? I am..." The doctor took a long, deep breath, and pulled back. "I... have committed a serious ethical lapse - it was not my first - and ... I have wanted this for too long. I, I have to be sure. I have to know. You are not doing this just to spite your mother?"

Fareeha laughed, a little bitterly. "No."

"Have I put pressure on you? Have I been..."

Fareeha chuckled and smiled. "No."

"Then... why? Why now?"

Her wife grew quite sombre, quite quickly. "I..." She pursed her lips and looked at the floor, and did not speak for a moment, and then not for another moment, and not for another moment after that. She covered her eyes with her hands, then covered her entire face, sliding her palms slowly down, collecting her thoughts. Softly, looking up, but to the distance, she began, "I was always taught life had phases, and that it mattered to go through all of them." She bit her lip. "That they all have a purpose. That everything has a time, and a place, and that all the phases of life are equally valuable, in different ways. Part of that is... that age brings wisdom."

"I do not disagree," said her wife, softly.

"Mother - Ana - believed in that, particularly. That the wisdom of age is important to humanity. That there is value - and knowledge - in understanding the decay of time, in understanding" - she looked at her own strong arms, and her own strong hands - "that this does not endure."

Angela Ziegler nodded, and her expression subtly changed, as her thoughts raced ahead of her wife's speech.

"I have lived long enough to understand that, at least, a little. But - if she... if this is what she calls wisdom..." She glared back to the screen, with its softly glowing text, anger in her eyes. "This is not wisdom, it is insanity." Her gaze whipped back to her wife, and she looked deep into her eyes. "Is this what awaits me in old age? This... paranoia? This capriciousness? This... madness? I will have no part of it. I beg you to save me from this."

Angela met her wife's sight, falling into the dark pools of her eyes, reaching across to her wife, touching her cheek and chin and hair. "I have wanted nothing more in my life." She closed her own eyes, for a moment, and opened them again. "But ... I have to do this correctly."

"Whatever this is," she gestured to the text on the display, "it is not genetic. If it is environmental, it is not in you. You carry nothing that makes this inevitable, or even likely. I do not know what has happened to your mother, but ... I do not think, not even for a moment, that you would share her fate."

Fareeha nodded. "Good." Slowly, she looked down again, contemplating Angela's declaration carefully for seconds, then for a minute, then for another, before looking back up. "But it doesn't change my decision. The only reason - the only true reason - I have said no, is my belief in what she taught me." She reached over, and touched the display, with its texts, with its threat. "I no longer have good cause to think it has value."

"I'm sorry," said her wife. "I'm so sorry."

"I'm not," said her lover. "Illusions do not suit me." She shrugged. "Besides, it's not like you can't turn the nanites off."

"No," acknowledged the doctor. "But they will begin repairs immediately. You will lose your scars, over a period of weeks. They are part of your life, your experience, and they will fade completely, over time."

The younger soldier nodded. "They are mostly hidden, anyway."

"Not from me," smiled the doctor. "I treasure them, as they are a part of you."

The flying officer snorted. "They hurt in rainy weather, you know that. They bother me every time we visit my father. This one, in particular," she pointed to the left side of her ribcage, "I will be most glad to see this one gone."

"You will look younger. Not very much, but somewhat. Overwatch ignores it, in me - but they may not, in a field soldier. In you."

"I will demonstrate to them that I do not care what they think."

"Then you are absolutely sure?"

"Yes," she said, mind clearly made up. "I have no idea what it takes to start the process. If I could take the first dose, receive the first infusion, whatever the procedure might be - if I could do it right now, this very instant, I would."

"You're sure."

"Yes."

"Right now."

"Yes."

Angela laughed, just a little - "I have been waiting to do this for so long..." - and sat in her wife's lap, and kissed her, breathlessly, tightly, hard. Her lips tingled against her wife's, like electrics, but without the shock, and Fareeha felt her pulse quicken, and it felt to the rocketeer almost as if their hearts were moving into sync as the electrics moved across her skin, and her eyes widened as the low, persistent, ignored ache in her left shoulder faded, and she realised... Now. And she pulled her wife against her, harder, and they kissed until neither could avoid breaking away for a breath, as hard as they fought against it, and so they broke away, both panting, both shaking, just a little.

"That... was not what I expected... in a nanite delivery system." She laughed, in little huffs, feeling somehow light, somehow bubbly, all over. "But I approve of it."

Her wife took a deep breath, giggling throughout, no, more than that, but she did not have words for the kind of burbling elation running through her mind. "I," she laughed, "I thought it would be a gift on our honeymoon, but I've kept it to myself until you were ready... I am so happy... but... how do you feel?"

The Egyptian laughed, and pulled her wife back against her body. "I feel, doctor, like I need another dose."

Angela grinned broadly, eyes alight like stars. "You don't, but - isn't it convenient I just happen to have one ready?" She leaned in, and they kissed again, 'till nothing else mattered at all.

Two hours later, Fareeha forwarded Ana's message to the rest of Overwatch, flagged "Mission Critical - Urgent," recommending most strongly that regular Embassy staff be warned, that Swiss and UN authorities be notified, and that Athena step up security on all exterior access points. "If Ana Amari has decided to play it like this," she said, in her forward, "we need to take her seriously. I will do what I can to talk her back to sensibility, but this is a threat, and it should be treated as such. And so, unfortunately, should she."

-----

Venom ignored her mail. Venom often ignored her mail, particularly her Overwatch mail, when she wasn't at Overwatch, when she wasn't playing Tracer. Venom liked not being in charge - despite being on Talon's executive council - and while at Overwatch, if push came to shove, she was in charge, and she knew it. But she couldn't keep ignoring Winston forever, no matter how much she didn't feel like talking to him, and so, eventually, she didn't.

The assassin hit [Acknowledge Signal] on her padd, and jumped in first, saying, "Fine," exasperation in her voice. "I'm here. First things first tho', did Angela tell you..."

"Check your mail. Right now. I'll wait."

Lena glared, angry again. "No. First. Did Angela tell you what happened?"

"Yes," said the scientist, "We know. The whole team. We know all of it, I'm pretty sure. She offered her resignation, I refused to accept it. Lena, check your mail right now. It's important."

Lena looked sideways at Winston, anger in her eyes, but pulled up her Overwatch mail in another window. "That's quite the thread you've... got..." She blinked. "...oh."

The scientist nodded. "That's why I haven't been letting you cool down. I'm sorry, but you can see why."

"Wow," said the Talon assassin. "This is bad." She read Ana's mail - and Fareeha's commentary and recommendations - again. Or maybe, she thought to herself, it's good. Maybe now they'll just step aside. She looked back towards Winston. "Do you know what this means?"

"Fareeha is trying to talk to her. No luck so far, but she's still trying."

"Do you know what this means? Winston, I need to know."

"...yes. I do."

"Good." She sighed and shook her head. "I tried, luv. I really did. I could've solved this weeks ago. But I was nice, and I played it your way... and look where it's got us."

"We don't know that. And I don't like your way of handling these things. I'll never like it, and I'll never not prefer our way, and I'll never stop insisting we get first shot, when it's our jurisdiction. But..." he looked down and to his left. "You had a right to know about this mail. Even if I knew how you'd react. Even if I knew what you'd do."

You made sure I was informed, the assassin realised. You didn't delete the mail. You even called my attention to it. She breathed. Bloody hell, this has to be hard on you.

Lena's face softened a little, and she smiled a sad smile. "Thanks, big guy." She closed her eyes. "I need to talk to Angela - using my codes. I'll drop a new set of keys in the usual place; she'll need access to that drop, or you'll need to ferry the files." She looked back at her old friend. "Will you do that for me?"

The ambassador nodded, deciding not to ask why. "I will."

"I'm sorry."

"No, you're not. You're glad you've got a reason."

Venom snorted. "Fair cop. I really am sorry, though. Not for what we're gonna do, but for how hard it is on ya."

"This is not the first time I've had to be a little complicit... but it may be the most difficult."

Lena nodded. "I didn't want..." Damn you, Morrison - do you have to destroy everything you touch? "I didn't want to put you in that position again. That's all."

"Look, Lena," said the scientist. "Just don't go out of your way. Not with Ana. I know what Jack's done, that's one thing, but Ana..." he said miserably, "Do what you have to, just... don't be extra about it. Can you at least do that for me, if not for Fareeha? Please?"

The Talon agent thought about it, hard. If we can get the video, if we can get that damned gun of hers before she hands off imagery... then she's just another batty old conspiracy theorist who doesn't make any sense. And we don't risk losing Pharah. She gave Winston a dubious look - the most dubious of looks - and set her upper lip, but nodded, just a little. "I'll try. No promises."

"None expected," he said, knowing it was the best he'd get.

She pressed a few buttons on her padd. "I've dropped new codes for Angela. You'll relay 'em?"

"She'll have them in a few minutes."

"Thanks, big guy. For all of it, but... particularly for not trying to hide this from me."

"These were colleagues of mine once, Lena. Yours, as well. Don't make me regret this any more than I already do. Please."

"Gloves off, luv. We're gonna do what's needed." She shook her head, and tapped the tabletop in front of her. "But I'll do my best t' keep it to that."

"Thank you."

"Thank me when it's over - if y'still want to. Y'may not. But right now..." She put her hands on the table. "I need to debrief my team."

"Good luck," Winston said, "...I think."

Lena smiled, ruefully. "Best I'll get?"

"Best I've got to give. Winston out."

[sciencespies]

The Inventor of Ibuprofen Tested the Drug on His Own Hangover

https://sciencespies.com/nature/the-inventor-of-ibuprofen-tested-the-drug-on-his-own-hangover/

The Inventor of Ibuprofen Tested the Drug on His Own Hangover

In retrospect, perhaps toasting the success of a new medication he helped invent with several shots of vodka in Moscow was not a good idea. However, it was too late to go back. English research scientist Stewart Adams was faced with the consequences of his actions: a serious hangover.

As he woke up that morning in 1971, Adams realized he needed to do something to relieve his throbbing headache, so he could coherently deliver an important speech at a pharmacological conference in a few hours. He reached for that new drug and swallowed a 600-milligram dose. Voila!

“He took a handful of ibuprofen and felt fine,” recalls his son David Adams. “No hangover!”

While the drug had been tested for pain in clinical trials, no one had yet tried it on an alcohol-induced headache. The older Adams would later say, “That was testing the drug in anger, if you like. But I hoped it really could work magic.”

Stewart Adams and his associate John Nicholson invented a pharmaceutical drug known as 2-(4-isobutylphenyl) propionic acid. It was later renamed ibuprofen and is now one of the world’s most popular nonsteroidal anti-inflammatory drugs (NSAIDs) under the brand names of Brufen, Advil, Motrin, Nurofen and others. It is estimated that one package of the product is sold every three seconds in the United States.

Ibuprofen is now one of the world’s most popular nonsteroidal anti-inflammatory drugs (NSAIDs) under the brand names of Brufen, Advil, Motrin, Nurofen and others.

(Jeffrey Greenberg/Universal Images Group via Getty Images)

For their work, both Adams and Nicholson were inducted into the 2020 class of the National Inventors Hall of Fame. They were honored for creating a drug that is used worldwide to safely and effectively treat pain, fever and inflammation for conditions from arthritis, headaches and even hangovers.

“He was an incredibly dedicated and passionate scientist,” says his son, who followed his father’s footsteps in science. “He had several setbacks in his career, but he was quite determined. I always admired his persistence.”

One of those obstacles was, in fact, ibuprofen. Adams had originally set out to find a cure for rheumatoid arthritis. While he was obviously pleased with the success of ibuprofen, he was disappointed that he never developed a drug that would reverse the debilitating disease that affects millions of people.

“My father was enormously proud of what he accomplished, but readily admitted that it was based on a failure,” says David Adams, who is vice chancellor and head of the College of Medical and Dental Sciences at the University of Birmingham in England, as well as a medical doctor, professor of hepatology and researcher. “He really wanted to find a cure for rheumatoid arthritis. Ibuprofen became an effective treatment for the disease, but it was no cure.”

Stewart Adams began his career in pharmaceuticals at the young age of 16, when he started an apprenticeship at a drug store owned by Boots UK Limited, then known as Boots the Chemist. He went on to earn a degree in pharmacy at the University of Nottingham and then received his PhD in pharmacology at the University of Leeds. Adams rejoined Boots in the research department in 1952 and started working on a cure for rheumatoid arthritis. His goal was to develop something that was as effective as steroids but had none of the side effects.

Adams began his research by studying how aspirin worked, which no one else was doing at the time. He was interested in the drug’s anti-inflammatory properties and hoped to find something that mimicked those qualities but didn’t cause an allergic reaction, bleeding or stomach irritation like aspirin could.

Chemist John Nicholson helped Stewart Adams test more than 600 different compounds in hopes of finding one that could reduce inflammation and that most people could tolerate.

(National Inventors Hall of Fame)

Adams recruited Nicholson, a chemist, to help him test more than 600 different compounds in hopes of finding one that could reduce inflammation and that most people could tolerate. They narrowed down the field to five drugs. The first four went into clinical trials and all failed. The fifth, though, proved to be successful. They received a U.S. patent for ibuprofen in 1966. Three years later, it was approved as a prescription drug in England and soon became available around the world as an over-the-counter pain reliever.

Kim Rainsford edited a book on the drug, Ibuprofen: Discovery, Development and Therapeutics. The professor emeritus at Sheffield Hallam University in England is considered a leading authority on ibuprofen.

“It is handled and metabolized in the body very predictably,” he said in an interview with the BBC in 2011. “It accumulates very well in sites where you need pain relief. It’s got a very good safety profile, it’s got wide acceptance because it does control inflammation as well as the painful symptoms.”

David Adams says his father had a “wonderful sense of humor.” The son recalls how his dad helped him with a research paper that was actually critical of some of the attributes of ibuprofen. When it was published, someone approached the senior Adams and commented how the paper was authored by someone with the same last name. “Oh, that’s interesting,” Stewart Adams replied with a wry smile.

The younger Adams says his father liked to joke he was the only person who lost money on the invention of ibuprofen. Even though the drug was patented by him and Nicholson, who died in 1983, they received no royalties for its enormous success. In fact, Adams paid the 1 pound filing fee for the patent but never submitted the receipt for reimbursement by Boots.

As the popularity of ibuprofen spread, so did Adams’ fame. He was recognized for his achievement with numerous honors, including in 1987 an OBE, or Officer of the Order of the British Empire, which is bestowed by Queen Elizabeth upon people who make a significant impact in their field of work.

“Through their collaboration, Stewart Adams and John Nicholson were able to show that ibuprofen was safer and more effective than many previous pain relievers,” says Rini Paiva, executive vice president for selection and recognition at the National Inventors Hall of Fame. “Today, ibuprofen use is widespread, and it is one of the safest, most effective and most widely used treatments for reducing pain, fever and inflammation. All of this contributed toward the inclusion of Adams and Nicholson in our latest class of world-changing inductees.”

Adams even made it on a list with actor George Clooney as one of “The 50 men who really understand women.” Published by the Guardian in 2007, it ranked him 26th because ibuprofen had become “the most effective remedy for hangovers and period pain known to womankind.”

“He got on the list because of how the drug helped with menstrual pain,” says David Adams. “My mother was always amused by that and would say my father should have been on the list of men who least understood women.”

Joking aside, Adams says his mother, Mary, was extremely supportive of her husband and two sons, including Chris, a solicitor, or lawyer, in Nottingham. She was also a scientist but left the field to raise a family and later become a teacher.

Stewart Adams died in 2019 at the age of 95. His son says he was a humble person who went to the pharmacy and purchased ibuprofen just like everyone else. He didn’t make a big deal out of his invention but was particularly pleased about how it brought relief to millions of people.

“He was scrupulous about playing by the rules and would never expect a free supply from Boots,” David remembers. “He never mentioned that he was the inventor and listened patiently when the person selling it would ask if he had taken it before. Dad was a remarkable man.”

#Nature

[unfolded73]

What Comes Next (5/8)

Summary: They lived happily ever after. And then what happened? (A Post-S6 story.)  Starts about a week after the final battle, and explores the highs and lows of newly married life between Emma and Killian as they deal with work, friends, and family as life in Storybrooke settles down somewhat.

Captain Swan, Explicit (this update particularly so), ~4600 words this chapter

Thanks to @j-philly-b for the beta.

CHAPTER 1 | CHAPTER 2 | CHAPTER 3 | CHAPTER 4

Emma stirred sugar into her coffee mug as she stared out the kitchen window. For the first time possibly ever (not counting those early days of their relationship when she’d set her alarm extra early to try to sneak out of Killian’s room at Granny’s without half the town seeing her), Emma had woken up before her husband. She could hear the shower running upstairs, while here she was already dressed and ready for work. Up was down, black was white, and Emma Swan was ready for work early. Something had woken her up at five in the morning and she’d just lain there, awake, until finally giving in and getting out of bed.

Sighing, she turned around to see yesterday’s mail neatly stacked on the kitchen table where Killian left it for her the day before. Walking over, she idly flipped through the pile. There was a water bill, a notice that she was pre-approved for a credit card, a postcard coupon for 20% off at the Three Bears Day Spa, a Hammacher Schlemmer catalog (and she wondered what kind of dark magic they’d used to track her to Storybrooke), and a letter from the Dr. Naito’s office. She pulled that one out, setting down her coffee to open the envelope. Her eyes scanned the brief letter, and she mentally added ‘call the doctor’ to her increasingly long list of things to do.

By the time Killian came downstairs, she was on her second cup of coffee and had managed to make some toast.

“I hardly knew what to do this morning, you waking before me,” he said with a kiss on her cheek. “Everything all right?”

“Yeah, I just woke up at five and my body decided it was done sleeping.”

Killian poured coffee into his favorite mug. “You should have woken me,” he said with a waggle of his eyebrows.

“I wasn’t really in the mood for that, or I would have.”

He sat down beside her at the table. The letter from her doctor was lying in front of him, and his eyes skimmed over the text. “What’s a pelvic exam?” he asked her.

Emma snorted. “Surely you can guess.” He just looked at her expectantly. “Dr. Naito’s my gynecologist, which means she’s a doctor for my lady parts.”

“I’m glad to hear Dr. Whale doesn’t take care of that,” he said.

“Yeah, tell me about it. She delivered Ashley’s daughter, so I met her not long after I moved here. Anyway, a pelvic exam is an annual checkup that women get.”

“What sort of checkup?”

Emma rolled her eyes. “I promise it’s not sexy to describe.”

“I wasn’t implying that it was, love, I’m just curious.” He got up and went over to the refrigerator, pulling out a carton of eggs and setting it down next to the stovetop.

“Okay, well, you get undressed and have to wear a stupid paper gown. Then you put your feet up in these metal stirrups so that the doctor can get a good look at your vagina.”

“I don’t have one of those,” Killian commented, smirking, as he cracked eggs into a bowl.

“And that’s why you don’t need a gynecologist, babe,” Emma mumbled around a mouthful of toast. “So there’s a few things she’ll do, but the main thing is a Pap smear.”

“What’s that?”

Emma made a face. “I suck at trying to explain stuff like this. It’s where they take a sample of cells from your cervix and test them for, like, cancer.”

“Cancer?”

“Yeah, cancer is—”

“I know what cancer is, Swan, I’m just worried at the idea that you might have it.” He abandoned the eggs he’d been whisking and approached her at the table.

“There’s no reason to think I have it, Killian, it’s just a test they do on all women. It’s routine. She’ll also check my IUD, although I should have at least another year on it—”

“Do you want me to accompany you to this appointment?” he asked, his eyes still filled with concern. Perhaps it was his life in the Enchanted Forest that was coloring his reaction. Probably in his experience, by the time a doctor was summoned, things were already terribly wrong.

“Killian, I need you to chill out.” She put her hand over his. “There is really nothing for you to worry about. I’ve had plenty of these tests before, and they always come back negative. Which is good, negative is good. It means there’s nothing wrong.”

He seemed to visibly relax a bit. “If you say so. I’d still happily go with you, if you want moral support.”

“I really don’t.” She wrinkled her nose. “It’s not that big a deal for me, I promise. You being there would be weird.”

“It’s not like I haven’t seen it all before, love.” He returned to his scrambled egg preparation.

“Yeah, but there’s sexy contexts for my vagina and unsexy ones, and I really don’t want to mix the two.”

He looked at her for a long moment. “All right, if you’re certain.”

In spite of his acceptance of this aspect of modern life for a woman of reproductive age, as they went about their usual work that day, Killian seemed clingy. It was as if, after all the threats to her life that he had witnessed, it was just now occurring to him that he could lose her to something much more pedestrian. Throughout the day, every time they were in the same room was an opportunity for him to press his hand supportively against her back or squeeze her hand or shoot her one of his lovestruck expressions.

To be honest, it was a little bit annoying.

She loved Killian’s affectionate personality, she really did. After she spent her childhood starved for human touch, she usually revelled in how frequently he touched her, and how obvious it was that he loved her. Today though, although she would never tell him so, she was feeling smothered by it. She encouraged Killian to take off early so that at least one of them could be home when Henry got home, her ulterior motive being that she really needed some time alone.

In the quiet station, Emma took a box of push-pins out of her desk and stood at the map of Storybrooke, putting a pin into each of the locations where the recent rash of break-ins had occurred. Granny’s, Moe’s flower shop, and Jefferson’s shop were all relatively near the middle of downtown, while Ashley’s daycare was further away. She supposed that the increased vigilance of the store owners in town, coupled with Killian’s patrols, might have driven the thieves to search further afield for a target. There probably wasn’t anything to the pattern, as it was mostly driven by opportunity.

She pulled up the reports for each of the robberies, looking at the dates. They were spaced roughly seven to ten days apart, which meant they were due for another break-in soon. She really wanted to catch these people, whoever they were.

Emma had been checking around with the other Storybrooke businesses to see if anyone had made any unusual purchases with a large chunk of cash, but so far, nothing. And while it was now possible for anyone to leave Storybrooke any time they wanted, for the most part, people didn’t. The former residents of the Enchanted Forest were uncomfortable out in the land without magic, or they were still afraid that crossing the town line would have some horrible effect on them, and almost everyone behaved as if that barrier still existed. So while it was possible that the thief or thieves were spending their spoils out of town, she somehow doubted it. More likely, they were stashing the cash in a sock drawer or under a mattress, waiting for something. If she could just get a suspect, a search might be their downfall.

The main phone line for the sheriff’s station rang, making her jump. Emma picked up the receiver, and was immediately treated to the sound of a sneeze right in her ear.

“Sheriff Swan,” she said.

“Hi, Emma, it’s Sneezy.”

“I figured. What can I do for you?”

“Listen, maybe it’s nothing, but Grumpy said I should call you. When I looked out the window of the pharmacy a little while ago, I thought I saw someone looking over here from behind a tree across the street.” He paused to sneeze again. “I didn’t get a good look; I mean it was just for a second, and—” Another sneeze interrupted his tale.

“Are they still over there?” she asked, looking around for her car keys.

“No, not anymore. Like I said, maybe it was nothing, but given all the robberies…”

“Yeah. You were right to call me. What did the person look like?” Emma sat down on the edge of her desk, looking at the map again and picturing a pin in the spot where the pharmacy was.

“I didn’t get a good look.”

“Man? Woman? Short? Tall? Young? Old?”

“Man, I think. Average height. Other than that, I don’t know. I really didn’t see his face.”

She sighed. “Okay. What time do you close?”

“Six o’clock.” Emma rolled her eyes; she didn’t miss much about Boston, but she did miss stores that managed to stay open past dark.

“Okay, lock up tight and don’t leave any cash unsecured anywhere,” she told him. “Killian or I will try to keep an eye on the place tonight, in case they come back and try to break in.”

He sneezed three times in rapid succession. “Will do, Sheriff.”

Emma started to call Killian, and then stopped and looked at the time on her phone. It was almost six now, although she assumed nothing would happen before dark. She was suddenly transported back to her bail bondsperson days, when she used to sit on a stakeout in her car with nothing but a tattered sudoku book and a box of those protein bars that were really just glorified candy bars. It was often cold and always boring, but she was perversely nostalgic for it all of a sudden: a time when she could sit in her car all night and eat junk food and no one would care. No one would wonder where she was, because there was no one in her life to wonder.

She loved having people who worried about her and missed her and wanted to be at her side. It was all she had ever dreamed of as a kid. But in that moment, she felt a strange pang of longing for a time when the only person she had to answer to was herself.

Emma started to plan. If she was going to stake out the drug store, she needed a less conspicuous car than the department’s one squad car or her yellow Bug, which everyone in town knew on sight. She thought about cars she could borrow. Regina’s Mercedes and her dad’s truck were as well-known in town as her own car. Zelena’s green monstrosity would stick out like a sore thumb. She needed a boring car, the kind of car that your eyes just slid over without even seeing.

Mom’s station wagon, she thought. Perfect.

She dashed off a text to Killian: I’ve maybe got a lead on the robberies. Don’t wait up.

Not three seconds passed before he was calling her.

“I’ll join you,” Killian said by way of a greeting. “What’s the lead?”

She felt immediately churlish. “You’ve been working a lot of long hours lately; I’ve got this.”

“Don’t be silly, Swan, I’m perfectly well rested. If you think there’s a way to catch the thieves tonight, I’d like to be there to help.”

He had a point, and she knew it. There could be more than one of them, and it would help to have Killian to take them down. And yet, she couldn’t seem to stop herself from arguing. “I don’t want to pull rank on you, but I will if I have to. We can’t expect to run the sheriff’s station effectively if we’re both pulling all-nighters at the same time.”

There was a long pause. “Sounds like you’ve made up your mind.”

“I have.”

“Fine. At least promise to call me if you need help,” he said, anger evident in his voice.

“I will.”

He disconnected the call without saying goodbye. Whether that was an indication of his level of frustration or his lack of phone etiquette, she wasn’t sure.

I love you, she texted to him.

He didn’t respond, but Killian wasn’t really a texter, so that wasn’t unusual. Gathering up her belongings, Emma locked up the station, phoning her mother to warn her that she was on her way to borrow her car as she mentally made a list of the terrible junk food she wanted to buy in preparation for her stake out.

~*~

By 10:30 p.m., Emma had finished off the coffee she’d picked up from Granny’s to stay awake.

By midnight, she’d eaten two protein bars and an entire package of Sour Patch Kids, and felt a little sick to her stomach.

At 1:15 a.m., after too many games of Words with Friends with Zelena, her phone battery died. She reached for her charger, groaning when she belatedly realized she’d left it in her Bug when she switched cars with her mother. Frustrated, she threw the phone onto the passenger seat. What she wouldn’t give for a sudoku book right about now, she thought.

At 2:00 a.m., after whisper-singing to herself every pop song she could think of, she started to nod off for the first time.

At about 2:45 a.m., she started to really miss her husband.

The first indication that dawn was on its way reached her eyes sometime after 4:00. Either she’d been wrong that someone was casing the pharmacy, or she’d been wrong that they planned to hit it tonight, or they’d spotted her and gotten scared off. Regardless, her sleepless night had been a huge waste of time. Cranking the engine of Snow’s sensible station wagon, Emma headed for home, figuring she could get a couple of hours of sleep before work.

The house was dim and silent when she let herself in, and she kicked off her shoes, already thinking about how nice and warm Killian would feel when she curled up against him under the covers.

Tiptoeing into the bedroom and closing the door softly, Emma was headed for the bathroom to brush her teeth when Killian turned on his lamp. She jumped.

“I thought you were asleep,” she said, her hand over her chest.

He sat up in bed. “I was, but after I awoke a couple of hours ago and tried phoning you and you didn’t respond, I was too worried to sleep.” The muscle in his jaw spasmed, and Emma knew that he was angry.

“My phone died and I forgot my charger. I’m so sorry; I didn’t mean to make you worry.”

“That was when I realized that you hadn’t even bothered to tell me where you would be. So I’ve been lying here, wondering if I should try walking all over town to try to find you, or if I should call your father and ask him to drive me around looking for you. Or maybe I could go up to the top of the clock tower and spot you that way. And I tried to weigh your frustration with me for doing any of those things against the odds that you were lying injured somewhere. Or dead.” His voice got louder and louder as he spoke, until he was almost shouting at her by the end, his tirade slightly undercut by his mussed bedhead.  

Emma swallowed around a lump in her throat. “You’re right. I was thoughtless.”

“Yes, you were.”

She sat down at his side, wondering if she should take his hand. “Can you forgive me?”

He huffed. “Emma, I love you more than anything in my life, of course I can forgive you, but I need to know why you shut me out today.”

She winced. “I just… I still sometimes get itchy, depending on people. And having people depend on me. Maybe I’ll never be completely comfortable with it, I don’t know.” Now she did reach for his hand, and was relieved when he squeezed her fingers gently.

“I watched you die, Emma,” he said, his voice raspy. She looked up from their joined hands into his eyes. “I stood in the street and watched you, my wife who I’d barely managed to have five minutes with after we exchanged vows, throw your sword aside and get impaled.”

“Hey, at least you didn’t have to do the impaling yourself like I did,” she said, trying to make a joke out of the worst moment of her life. Killian didn’t smile.

“You’ve been a beacon of light in my life, leading me out of the darkness. Two hundred years of selfishness and revenge and murder, and loving you pulled me out of that. And I can’t help but think…” He took a shaky breath and looked down at their joined hands again, his thumb brushing over her knuckles. “I had a lot of time to ponder this, while that prophecy was hanging over your head. And it’s not just that losing you would be the worst thing that’s ever happened to me. It’s that I don’t think I can keep myself from becoming that man again if I lose you.”

Emma’s heart broke for him. “I think you’re wrong. I think you can. For Henry. For Mom and Dad and for everyone in this town who counts on you and looks to you as a hero. Maybe it was me who started you on the right path at first, but I don’t think it’s me that keeps you on it.” She laughed. “For one thing, I’m not that saintly a person myself.” She  scooted a little bit closer to him on the bed. “You still think of yourself as a bad man who changed. But I feel like I know you pretty well by now, and let me tell you, you’re not that. You’re a good man who spent a long time lost, and now you’ve rediscovered who you really are.”

He pursed his lips with a hint of a smile. “Perhaps.”

“We’ve both faced losing the other, and we didn’t deal with it very well.” She blew out a breath. “Me especially. But unless we get super lucky, and live to be a hundred — or in your case, four hundred or whatever,” she said with a laugh, “and die together in our sleep, someday one of us is gonna have to face life without the other.”

He shook his head. “I don’t know how. And I’m sorry; I annoyed you today because I was struggling with letting you do things on your own, and I know how independent you are—”

“I could’ve been a lot more sensitive to your fears,” she admitted, leaning over and pulling him into a hug. There was a pause, and then she felt his hand pressing hard against her back, the solid strength of his arms holding her tight.

“I thought I was over it,” he said against her shoulder. “You lived, and everything turned out fine, and almost before I could take a breath we were celebrating our slightly delayed wedding night, and I thought I was over it. But this morning, imagining you falling ill, and then when I couldn’t reach you on your phone…”

“I’m sorry.” She brushed a kiss against his cheek. “I’m really sorry.” Letting out a little hiccupping sigh, an almost-sob, Emma continued to kiss his face. “I’m not over it either,” she whispered.

He kissed her lips then, hard and forceful, a little bit sloppy in his haste. Emma crawled into his lap, their mouths meeting over and over with increasing desperation. “I love you so much,” he gasped as she writhed against him, quite suddenly so aroused that she felt like she was going to jump out of her skin if he didn’t touch her.

“I love you, too.” She spoke the words into his bare shoulder, her teeth scraping his skin. She felt the need to apologize again for making him worry, but she’d apologized enough and he’d accepted, and there was nothing else she could say now. All she could do was let their bodies take over and hope that the pleasure they could make between them would give them both a measure of comfort.

Killian moved his hand around to start unbuttoning her blouse but he was trembling, struggling to work the tiny buttons. Emma stood up from the bed, pulling her clothes off and tossing them aside quickly as Killian did the same with his pajamas. She was back on top of him in an instant, pressing as much of her skin against his as she could, bracketing his hips with her knees, her breasts crushed against his chest and his arms circling her. It felt so good to feel his body against her, warm skin and coarse hair, his calloused fingertips running down her back.

“Tell me what to do,” she said softly, combing her fingers through his hair. “What can I do to make you feel good?”

Usually he was the one asking those kinds of questions, catering to her every desire as if everything he did to her in bed wasn’t fantastic. But tonight it felt hugely important to her that she do for him.

Killian pressed his forehead against hers. “I just need you, Emma.”

Emma reached down between them, closing her fingers around his erection and stroking slowly, making him whimper. “You’re always so good to me. Let me be good to you.”

“You are, gods, so good.” His hips rose underneath her, chasing the movement of her hand.

Suddenly there was nothing she wanted more than to see him come apart like this while they held each other. Emma leaned to one side and made a grab for her bedside table drawer. Killian braced her thigh with the stump of his left wrist so that she wouldn’t fall off of the bed, and she pulled a bottle of lube out of the drawer. He watched her with hooded eyes as she squeezed a small amount of the lubricant into her palm.

When she returned to stroking him, making everything slick as she worked her hand up and down, Killian groaned, his hips matching the rhythm of her strokes. She wrapped her other arm around his back, squeezed him with her thighs, holding him close with every part of her that she could. She felt her inner muscles clenching at the sight of her husband coming undone, wanted to take him inside her and fuck him so badly, but she resisted the temptation. She needed to focus solely on his pleasure for now.

“I wanna see you come, Killian,” she said, increasing the pace of her fist, twisting it over the head of his cock with every upstroke. His eyes clamped shut, a grimace of pleasure-pain on his face. His hand went into her hair, fingers closing in the strands and pulling just enough to make her scalp tingle with the edge of pain.

“You’re mine, my love, my husband, a good man, you’re a good man.” she mumbled, hardly aware if anything she was saying was making sense, because he felt like he was close, he was so very hard in her hand and she was increasingly desperate for it, to feel that hardness slide into her body would feel so fucking amazing, but she kept stroking and he was fucking her fist, his moans increasingly out of his control.

His voice was a hoarse shout when he came, and she watched as the pearly white fluid hit her stomach, dripping down as she coaxed him through it, only letting go when she felt the spasms under her hand stop and his muscles start to relax.

Killian glanced at her from under his eyelashes, his heavy panting breath hot against her skin. He smiled shyly, before looking down at her abdomen again.

“I’ve made a mess of you,” he said, the gravel in his voice turning her on even more.

Emma rolled off of him, collapsing on her back, not cleaning herself up right away so he could look his fill. “Do you like it?” She ran a finger down between her breasts and into the wet evidence of his climax on her stomach. “Seeing me like this?”

Killian slid down and turned on his side, not taking his eyes off of her. “Aye.”

She grinned. “Keep watching.” Her hand continued its path down her body, plunging between her folds and further, two fingers slipping inside and fuck, watching him get off had made her so wet and sensitive. She pressed her palm against her clit and started a rhythm with her hand and her hips. The wet sound of her fingers pumping in and out of her reached her ears.

“You’re a vision like this, marked with my seed and desperate for more,” he said, propping himself up on his elbow. He reached out with his hand, gripping her upper thigh and pulling her legs further apart but otherwise not interfering with what she was doing.

Emma gasped out a strangled noise, shameless in the way she was moving and fucking herself and reaching for her orgasm, which she was barreling toward faster than she would’ve believed, given how incredibly intimate all of this was. Killian watching her touch herself should have been inhibiting, but it wasn’t. She wanted him to see how much she loved him and wanted him, and how just watching him had made her feel so good even when no one was touching her.

She cried out wordlessly, felt her muscles convulse in deep pulses against her fingers as she rode out her climax, her thighs drawing closer together and squeezing her hand in between. At some point she’d closed her eyes, and she felt Killian lift her hand and draw it up to his mouth, his tongue licking the wetness from her fingers. Then he pulled her limp body into his arms, hugging her close.

“Now we’re both a mess,” she said, almost giggling as their abdomens pressed together.

“I don’t give a fuck,” Killian said. He nuzzled against her cheek. “That was the sexiest thing I’ve ever witnessed.”

Emma snorted, thinking to herself that she doubted it, given the few racy stories she’d managed to wrangle out of him about Milah, and about some of the debauchery he’d witnessed in brothels over his years as a pirate.

“I can prove it to you, love.” He kissed her chin, rutting his hips against her, and she could tell that he was already half-hard again. “Let’s go rinse off in the shower, and then I’ll fuck you until you can’t move.”

“It’s a deal,” she said, grinning. Killian started to get up, but she stopped him with a hand on his bicep. “Hey. I love you. And I love being with you, even if I sometimes don’t show it.”

He brushed his lips over hers in a soft caress. “Anytime you need to be alone for a little bit, just say the word. I’ll understand.”

“And then afterwards—”

“We come back together like this.” He hauled her leg up over his hip, grinding against her center.

Emma gasped. “Yeah, that works for me.”

CHAPTER 6

[gomustanggirl16]

Childhood Cancer: Be Their Voice

@evangerscares, I saw your post about the fundraising you guys are doing for Christopher's Haven and I wanted to post this. This is a speech I did for my high school speech class on Childhood Cancer. This is beyond personal for me. I'm glad you guys are doing this and you have no idea how much it will mean to these kids and their families, so I wanted to post a copy of my speech and maybe it can help people better understand what it's like being a kid with cancer. There are things in here that might be confusing, I was addressing my class who've known me since 7th grade so...But here it is:

Childhood Cancer: Be Their Voice

“What would happen if a gunman went into a school today and shot 46 kids? What if seven of them died? It would be all over the news, every channel. But because it’s cancer instead of a crazy shooter, you don’t hear much about it. Now, what would be the outcry if it happened every day? Welcome to the world of childhood cancer!” This is a quote I found that really helps to put Childhood cancer into perspective. This year over 15,000 kids under the age 19 will be diagnosed with cancer in the U.S. This year nearly 2,000 of them will die. Albeit rare, it is growing more and more common in the US and is the leading cause of death by disease in children under the age of 15. Why is it the leading cause of death for these kids? Why do you never hear about it?  I have spent over 40 hours and thirteen years of my life dealing with these questions. It is my desire that after this presentation you will be persuaded to support childhood cancer awareness.

I want you to take this time and immerse yourself in the world of a child suffering with cancer. During this speech I will take you through the main three stages of childhood cancer. Stage one: The Diagnoses, stage 2: the treatment, and stage three: the aftermath.

Stage one: The Diagnoses

To get to the first stage you need to be diagnosed. For adults it is typically very easy to diagnose cancer because you are regularly screened for it, but cancer in children is often missed or not diagnosed correctly. Most cancers in children are mistaken for different diseases. For me they thought I had Lyme’s disease. The average age of diagnoses for children is six years old, while the average age of diagnoses for an adult is sixty-seven. Cancer in children is totally different from cancer in adults and affects different parts of the body. The most common cancers in adults are: breast, skin, lung, and prostate. The most common cancer in kids is ALL, Brain and central nervous system, and Hodgkin Disease. Cancer in adults also has links to environmental and lifestyle risks, where childhood cancers have little to no link’s to the way you live or the environment you live in. Most childhood cancers are actually believed to have a genetic factor.

Stage 2: The Treatment

            Every year there are over 40,000 children being treated for childhood cancer in the U.S. Since cancer in children is different than cancer in adults the way it is treated is different, or at least that’s what you would think. For the most part, childhood cancers are treated with the same chemo drugs and radiation levels as adults. In the last twenty years the FDA has only approved two drugs made specifically for childhood cancer and over half of the cancer treatments currently being used are over twenty-five years old. You see these treatments are not how you say it…safe.

These treatments come with harsh realities and major side-affects which we will touch later, but let’s take a look at some of the different types of treatment used in childhood cancer. Chemo drugs are the biggest way of treating cancer in general. The following are only a handful of chemo drugs and their warnings. Doxorubicin this drug is common but is only sometimes used to treat cancer in adults but is more used for childhood cancer. When looking more into the drug I found this in with the use and warnings, in big bold letters it said: “should be used with extreme caution in CHILDREN; safety and effectiveness in children have not been confirmed.” Etoposide: “is not recommended for use in CHILDREN. Safety and effectiveness have not been confirmed.” For one of the drugs, dexamethasone, It is a steroid and yes I was on steroids to help my immune system. My mom has recounted all the times I would wake up in the middle of the night because I was starving. This drug causes you to gain a lot of weight.  

Another steroid that is now a commonly used for ALL is methotrexate. It is highly toxic go figure! This is used as an acid agent but has debilitating side-affects the most common being “chemo brain”. “Chemo brain” is just a fancy term for extreme forgetfulness. I asked Mrs. Smith about her treatment with Meth. She was prescribed it for her RA. She told me the same year she was on it was our tenth grade year. She said it affected her work and her personal life to the point where she told her doctor this needs to change. She said that was the main reason she left teaching. She also mentioned she has little memory of that year. As most of you know I do not remember anything before about the age of nine. This is most likely a result of the chemo and my own brain wanting to protect me from the horrors I faced. I would ask a question about twenty times because I had no clue I had asked it five seconds before. These drugs they are brutal and are just as, if not sometimes worse than the cancer itself. I can personally attest to these side-affects. Just imagen if it’s that bad for an adult, how bad is it for children taking these drugs. There are surgeries and spinal taps and so much pain and suffering. You are vomiting and passing out and being kept away from people because your immune system has been compromised and anything like the common cold can kill you. This disease takes everything away from you.

  So why do we have such drugs? This because of a lack of funding. You see each year the NCI designates a certain amount of money to be used as funding for all cancer research. Childhood cancer research only receives four percent of that money. As for the pharmacies who are the main source of research for new drugs they see childhood cancer as “non-profitable” and “risky”. NCI spends only $26.4 million on pediatric cancer trials while it spends $254 million on AIDS and $584 million on Breast cancer. Because of this researchers rely primarily on foundations and gifts from the public to help raise the money

They also come with a very expensive treatment bills. The first three weeks of my treatment cost over $115,000. Insurance does help yes, but when your treatment can last between three months to three years, the bills begin to pile up. My mom had to quit her job to stay with me and my dad was working three jobs. We had to declare bankruptcy because of the hospital bills. We just only got out of it maybe six years ago.

 Stage 3: The Aftermath

The day you hear the words of your cancer is gone is the best day you will ever have in your life. I remember the date it was November 8, 2004. After nearly three years it was gone. For many this day never comes. For the Bono family this day never came. Watching your child die, is something no parent should ever half to do.

Sadly even when the cancer is gone the damage is done. At least 2/3 of childhood cancer survivors suffer from long term side-affects. A long term side-affect is a side-effect of the treatment or the cancer itself. These side-effects can show up months to years after treatment ends. Some of the more immediate affects are: a loss of a limb/limbs, paralyze from the waist down to being completely paralyzed. Loss of mental stability, just to name a few. The others on the other hand the ones that take years to appear can be the worst ones.

Because 30 years ago children weren’t living past five years no one knew that these things could happen. Now that these kids are living longer many into their teen years they have become more and more prevalent. Some of these include: secondary cancers, infertility, growth problems, tooth decay, emotional issues, learning and memory problems, heart problems, lung, digestive. These issues can be deadly. And most likely will be deadly.

You see as mentioned earlier breast cancer gets the majority of the money, the majority of the fundraising. All year its breast cancer this, breast cancer that! I mean come on! September is CC month that is our month! Instead they take over. So I took a look at the survival rates for breast cancer and CC. Breast cancer has a ten year survival rate of 83%, a 15 year survival rate of 78% and a five year survival rate of 99%. CC has had an increase in five year survival rates over the last 40 years from 10%-nearly 90%, but for many CC’s the survival rate is much less. You see CC is made up of 12 different types of cancers and over 100 different sub-types. Breast is one type with only hand full of sub types. Also 35% of children diagnosed with CC will die within 30 years. About 17% within the 5 year survival rate will die. Those that survive the 5 year 18% will within 30 years. They also have an 8x greater mortality rate due to increased heart and liver disease and secondary cancers. In reality that’s less than a 55% overall survival rate. So tell me why we don’t have the funding and support we need?   

Watching your child die, is something no parent should ever half to do. What makes it worse is all these parents can do is pray and hope that these treatments work. Here are some ways you can show your support: Daisy Day’s, Relay for Life, RMH. You see it’s not just prayer and money we want. We want to know that were not forgotten about, that there are other that care about us that want to help us. They are kids. They have no idea what’s happening all they know is that their lives are being destroyed and ripped away from them. These kids grow up faster than they should have to. They suffer so much.

I talk about my cancer, I’ve shared my testimony with you all, but there are things you don’t know. Nicole is probably the only one to know everything. After my cancer was gone I was almost immediately diagnosed with PTSD. It’s grown easier to talk about, but bear with me. I can say things casually about my cancer. But I can’t see another child with cancer. I mean I can look at a photo, but not a video and certainly not in person. When I go to CHOP I see these kids but I can’t look at them. When I meet Brianna, I balled my eyes out. I may not remember it, but it’s as if I do. When Bro Jo showed that video in class my first though was I don’t think I can watch this but I made myself. I cried throughout that entire hour. And when it was over and Nicole asked if I was ok I broke. You all saw me I know you did. I tell myself that I don’t avoid hospitals and I don’t. But I can become a hypochondriac faster than you can blink. At least two months before my CHOP appointment my mom notices my anxiety levels rise. I avoid eye contact when discussing my cancer I hate therapists. I still get night terrors. They went away for a while but last year they came back I’ve told you about those they’re not as bad as the ones I used to get. Those it took me a while to get back to reality. I’m telling you this because I’m not the only survivor with this I am fighting constantly. So are they.

 In this presentation today I have taken you through only some of what a child fight cancer faces. I have shown you the diagnoses, the treatment, and how their future will be affected because of the cancer. How devastating the lack of funding and support really is. Walking away today I just ask you one simple question: If you don’t give them a voice, who will? You can no longer say “I didn’t know.”

It's long I know, but...we may survive, but that's the funny thing about surviving, your not living. They're two separate things. I told myself I would try to keep what I tell people on this cite limited, but if it helps than it's worth it. I was four years old. I've never been a normal kid. Every year I walk into the doctors and wait with baited breath for them to tell me it's back or that a side-effect has appeared. The fight never ends.

Cancer doesn't care if your black or white, American or Asian, gay or trans. It doesn't care. My last visit to the hospital I walked into the room to have my blood drawn and there was this little boy no more than five screaming saying this: "I don't want to anymore. No more blood draws, tell the doctor I don't want to anymore. Five years old. Right after that I had to go have my heart checked and the tech tells me she had a boy in here maybe four with his sister and he pointed at the ultrasound and said that's my sissy's heart. He could read the machine. It doesn't just effect those with cancer but everyone around them. No kid should know these things.

So thank you for doing this, for supporting these kids, for giving them a voice.

[bigyack-com]

As Trump Promoted Drugs, Prescriptions Surged in Spite of Risks

It was at a midday briefing last month that President Trump first used the White House telecast to promote two antimalarial drugs in the fight against the coronavirus.“I think it could be something really incredible,” Mr. Trump said on March 19, noting that while more study was needed, the two drugs had shown “very, very encouraging results” in treating the virus.By that evening, first-time prescriptions of the drugs — chloroquine and hydroxychloroquine — poured into retail pharmacies at more than 46 times the rate of the average weekday, according to an analysis of prescription data by The New York Times. And the nearly 32,000 prescriptions came from across the spectrum — rheumatologists, cardiologists, dermatologists, psychiatrists and even podiatrists, the data shows.While medical experts have since stepped up warnings about the drugs’ possibly dangerous side effects, they were still being prescribed at more than six times the normal rate during the second week of April, the analysis shows. All the while, Mr. Trump continued to extol their use. “It’s having some very good results, I’ll tell you,” he said in a White House briefing on April 13.The extraordinary change in prescribing patterns reflects, at least in part, the outsize reach of the Trump megaphone, even when his pronouncements distort scientific evidence or run counter to the recommendations of experts in his own administration. It also offers the clearest evidence yet of the perils of a president willing to push unproven and potentially dangerous remedies to a public desperate for relief from the pandemic.On Friday, the Food and Drug Administration warned against using the drugs outside a hospital setting or clinical trial because they could lead to serious heart rhythm problems in some coronavirus patients. Days earlier, the federal agency led by Dr. Anthony S. Fauci — one of Mr. Trump’s top advisers on the pandemic — issued cautionary advice on the drugs, and stated that there was no proven medication to treat the virus.As the prescriptions surged in the second half of March, the largest volumes per capita included states hit hardest by coronavirus, like New York and New Jersey. Georgia, Arkansas and Kentucky were other states with relatively high per-capita figures. In absolute numbers, California and Washington, the earliest-hit states, were among the largest. The biggest number in either category was in Florida, where nearly one prescription was written for every thousand residents.Carmen Catizone, executive director of the National Association of Boards of Pharmacy, said the surge created shortages that “put patients at risk who depend on these medications” to treat other illnesses.“The fact that people reacted to what the White House said in such a way — in the 35 years I’ve been in pharmacy and pharmacy regulation, I’ve never seen that before,” he said.More than 40,000 health care professionals were first-time prescribers of the drugs in March, according to the data, which is anonymized and based on insurance claims filed for about 300 million patients in the United States, representing approximately 90 percent of the country’s population. The data is current through April 14.The data was compiled by IPM.ai, a subsidiary of Swoop, a company in Cambridge, Mass., that specializes in health care data and analytics based on artificial intelligence. It does not include drugs prescribed to patients in hospitals, where some doctors have administered the medication, or those released to hospitals from the Strategic National Stockpile.After Mr. Trump’s remarks last month, retail pharmacies across the country reported a run on the drugs, which are mostly prescribed by a small subset of medical specialists. Within days, states began issuing emergency orders to restrict the new prescriptions.Gwendolyn Young walked into her pharmacy in Los Angeles four days after the president’s March 19 briefing, trying to pick up a 90-day prescription of hydroxychloroquine. She has taken the medication for more than 30 years to treat lupus. The drug, while approved for malaria, is also used to treat lupus and other autoimmune diseases like rheumatoid arthritis. Hundreds of thousands of patients across the United States rely on it to keep painful symptoms at bay.At the pharmacy, Ms. Young said, she was told to start rationing her pills because the drug was being given only to patients who had Covid-19. She was eventually able to get a 14-day supply, but the uncertainty has made her anxious.“Will I have to keep doing this every 14 days?” she said. “What happens to those people who don’t push the way I do?”Although the availability of hydroxychloroquine has improved in recent weeks, the Food and Drug Administration still lists it as being in short supply.Mike Donnelly, vice president of communications for the Lupus Foundation of America, said that the organization received calls and emails daily from patients who were told their prescription could be filled only in part or not at all. A spokesman for the Arthritis Foundation said some patients received their refills only after calling around to as many as a dozen pharmacies.In the past month, about 40 states have intervened in some manner to quell the frenzy.Idaho was the first to take a hard line, issuing a temporary rule on the same day that Mr. Trump first mentioned the drugs in his daily briefing. The rule banned pharmacists from dispensing chloroquine and hydroxychloroquine unless the prescription included a written diagnosis of a condition that the drugs had been proved to treat. The rule also limited prescriptions to a 14-day supply unless a patient had previously taken the medication.The director of Idaho’s State Board of Pharmacy said at the time that many of the prescriptions were being written by doctors for themselves and their family members, a trend reported by other state boards as well.Some of those writing prescriptions for themselves may have been on the front lines treating patients; the data shows an uptick among health care practitioners working in emergency medicine. More broadly, the analysis indicates a major shift in the kinds of medical practitioners writing the prescriptions, based on prescribing patterns in retail pharmacies since 2016.Historically, the majority of chloroquine and hydroxychloroquine prescriptions have come out of a narrow band of specialties like rheumatology. That changed last month, when the specialties reflected in the data included larger numbers of those working in dermatology, ophthalmology, podiatry, urology and other areas.In the past six weeks, Dr. Niran Al-Agba, a pediatrician in Silverdale, Wash., has prescribed chloroquine to a handful of adults she considered high risk for Covid-19 — among them, her 76-year-old mother, who works in her medical office.Dr. Al-Agba said she began researching the drugs in early March after the death of a Seattle-area man, who at the time was the first known virus-related fatality in the United States. She concluded from her research that chloroquine might help, and she didn’t see any harm in writing a short prescription.“It’s just really hard to look at your mother and not try,” she said.Dr. Al-Agba instructed her mother to take the pills only if she spiked a fever, which she has not. She still has the pills.For Dr. Blake Williamson, an ophthalmologist in Louisiana, it came down to writing a prescription for himself. He worries about his close contact with patients and with his 84-year-old father-in-law, who is undergoing chemotherapy for lung cancer and helps care for his three children.He took a short, prophylactic course of hydroxychloroquine after reading studies from Europe that he thought were promising, and on advice from other physicians.Dr. Williamson said he thought he did the right thing, especially given his continued exposure to emergency patients in an area hit hard by the pandemic.“My goal was simply not to be an asymptomatic carrier who could harm patients or at-risk family members and not even know it,” he wrote in an email.The interest in taking chloroquine and hydroxychloroquine as a possible treatment did not originate with Mr. Trump.Reports from doctors in China and France that the drugs might help patients fueled interest in scientific and medical communities in the United States. Conservative media, in particular, trumpeted the drugs’ potential effectiveness, and the data shows prescriptions had already increased two and a half times over the weekday average during the week before Mr. Trump’s March 19 briefing.Mr. Trump soon extended his interest to a combination of one of those drugs, hydroxychloroquine, with an antibiotic, azithromycin.“HYDROXYCHLOROQUINE & AZITHROMYCIN, taken together, have a real chance to be one of the biggest game changers in the history of medicine,” he wrote in a post to Twitter around 10 a.m. on March 21, a Saturday.The tweet coincided with a weekend flood of prescriptions for the two antimalarial drugs. By the end of the day, the prescriptions had increased 114 times at retail pharmacies compared with the average weekend day, according to The Times analysis.On Tuesday, the National Institute of Allergy and Infectious Diseases, led by Dr. Fauci, issued guidelines against the combination of hydroxychloroquine and azithromycin except in clinical trials, with experts citing “the potential for toxicities.Enthusiasm for the drugs has been waning over the past couple weeks, including at Mr. Trump’s own news conferences and among researchers.A small trial in Brazil of chloroquine was halted after coronavirus patients taking higher doses developed irregular heart rates that increased their risk of a potentially fatal heart arrhythmia. A study of 368 patients in U.S. veterans hospitals found that hydroxychloroquine was associated with an increased death rate; the drug, used with or without the antibiotic azithromycin, also did not help patients avoid the need for ventilators. (The veterans study was not a controlled trial, and neither study has been peer-reviewed.)Mr. Trump was asked about the veterans study at his briefing on Tuesday.“Obviously, there have been some very good reports and perhaps this one is not a good report,” he said.By Thursday, Mr. Trump had moved on to a different subject, raising a question at his White House briefing about the use of disinfectants to kill the coronavirus inside the body. The remarks were followed by dire warnings from state health officials, who were inundated with requests for information about such a course of action. The president’s press secretary tried to make the case the comments were taken out of context by the news media, and Mr. Trump later insisted he had only been kidding.Jennifer Valentino-DeVries contributed reporting. Susan C. Beachy contributed research. Read the full article

[littlemissmeggie]

Hey Megs. I hope you're good at the moment. I'll pray everything turns out alright for you. You deserve it

hi mouse! thank you for this very kind message. i don’t really know how i am at the moment, to be honest.

i’ve had a weird? stressful? nerve-wracking? week and a half. two and a half if you go back to the unexpected seizure i had mid-february.  

here’s the story of my last week and a half...

early last week, i got a notification that one of my two seizure medications was ready for pick-up at my pharmacy. the other, keppra, requires refill approval every month from my neurologist, something i didn’t know until a few months ago. i checked the CVS pharmacy app and it showed that medicine was still waiting for approval. i figured i would wait another day to pick them up together rather than making two separate stops. the next day, the app still showed that the refill was pending approval. i called the pharmacy and they said they were still waiting to hear from my doctor.

on thursday, i realised that i only had three more doses of medicine left. i stopped at the pharmacy to pick up the med that was ready and asked about the second. they said they would fax the request again.

i went back to CVS on friday to check again and told the pharmacist that i was going to run out before monday if it wasn’t approved before the end of the day. the very nice pharmacist gave me an emergency stash to get me through tuesday morning because they still hadn’t heard from my doctor. so i called my doctor’s office and a very unhelpful person told me that i had to check with my pharmacy. “we can’t approve the refill to you.” yeah no shit i just wanted to make sure they were going to approve it because it was the end of the week and obviously they wouldn’t approve it over the weekend.

on monday morning, i called my doctor’s office again. after explaining the situation to the receptionist, she looked and said they hadn’t received a request from my pharmacy but that she would have the physician’s assistant—“dr. cretella’s out of the office.”—call my pharmacy and get everything sorted. that seemed weird to me because my pharmacy is very good and since they fax the office once a month, i know they have the right fax number. also, they sent it twice!

on my lunch break, i called my pharmacy and they still hadn’t heard anything but the pharmacist told me she would call the doctor. and then on my way home from work, i stopped at the pharmacy out of sheer desperation. the young pharmacy tech told me they were still waiting for the approval. i must have looked like i was going to start crying right there—i know i felt like it—because he rushed to apologize. “I’m so sorry, miss. i’m so sorry. i know you’ve been calling about it and i’m so sorry. we’ve tried contacting them. i’m so sorry.”

not his fault, which is what i told him.

the next morning, tuesday, i took the last dose of the emergency supply the pharmacist had given me. my boyfriend and i went out to do some errands and i called my doctor’s office again once they were open. again, i explained everything to a different receptionist. she put me on hold and looked through the pending requests. when she came back, she said, “you haven’t seen dr. cretella in two years.”

i said that i hadn’t realised it had been that long. i still wasn’t really sure what that had to do with anything.

“well, the request was denied because she can’t keep prescribing it without seeing you.”

i said, “first of all, my pharmacy was never told it was denied. and second of all, i’ve never had this happen so i didn’t realise she would just stop prescribing a necessary medicine without notifying me first.”

“well, it’s been two years.” 

at this point, i wanted to smack this woman. “is there any way i could get, like, a week’s worth of medicine to hold me over until i’m able to see dr. cretella? because i took the last dose this morning and i really can’t go without it.”

“well, dr. cretella’s on extended leave so you wouldn’t be able to see her. we could send you to another neurologist who we’ve been sending patients to since she’s been on leave.” (why had nobody else at the office told me she was on extended leave?! the girl on monday told me she was “out of the office.”) “but they probably wouldn’t be able to see you today.”

i said, “that doesn’t help me very much since i need the medicine today. and since you’re almost an hour and a half from me, i wouldn’t be able to get there today anyway. could you send a referral to a neurology practice near me?” (i’ve been looking for new neurologists for a while anyway and i was going to ask for a referral soon.)

“oh, we don’t do referrals.”

“i’m sorry. you don’t do referrals? who is supposed to refer me to another doctor?” i asked.

“well, that would be your primary care physician. we don’t do referrals.”

“i don’t currently have a primary care physician,” i told her. “how am i supposed to get a referral?”

“i don’t know, ma’am.”

“i can’t be the only person in the world without a primary care doctor,” i said. “how do other people without primary care doctors get referrals to new neurology practices?”

“well, it’s very uncommon for people to not have primary care physicians. and it’s not common for people to want to switch to a new neurologist unless they’re moving,” she told me.

i said, “i find both of those things hard to believe. i know plenty of people who don’t have a PCP. and i can’t believe i’m the first person who wants to get out of your terrible practice.”

she obviously hadn’t expected me to say that because she was quiet for a moment.

“you can’t just send something to this practice saying you’re referring me for treatment for epilepsy and headache disorders?” i asked. 

“no. we don’t do referrals. i guess you could have them fax us requesting your files and we could send them your medical records.”

i wanted to scream and also reach through the phone and strangle this woman. 

“you’d be more willing to send seventeen years of medical records than just a single paper that says you’re referring me to them?” i asked in disbelief. “wouldn’t it be easier for you to just send a referral? it’s, like, two sentences.”

“i’m sorry but we don’t do referrals.”

fuming, i asked, “before i hang up, do you have any suggestions for how i might be able to get medicine? because it’s guaranteed i will have a seizure if i don’t take the next dose tonight.”

“well”—this woman used “well” an irritating number of times—“you could try going to an ER and they might prescribe it.”

i hung up and called the neurology practice i wanted to be referred to; i explained the situation and told the woman there—cynthia—that my current neuro “doesn’t do referrals.” cynthia seemed to find that as ridiculous as i did. i told her the other receptionist’s suggestion that they request my medical records from dr. cretella. 

“oh, hun, we can’t request your records before you’re a patient here. and they shouldn’t be offering to do that. we really just need something saying that they’re referring you and what they’re referring you for. it shouldn’t be that hard for them.”

i told her i agreed and thanked her.

there was no way i was calling that idiot back so i panic-texted my sister who is a nurse at the hospital that’s fifteen minutes from me and is where the new neurology practice is located. 

“if i came to the ER at charlotte do you think they would prescribe me one of my meds?”

she called me a few minutes later. no, they would probably just give me another day or two. and then she asked what was up. 

so i told her everything, crying in my car in the stop & shop parking lot while my boyfriend did the grocery shopping.

“i’m going to call my primary. she’s really nice and i know her from the hospital too. i’ll see if she can get you in today. i’ll text you in a few minutes.”

thank god my sister is a quick thinker.

she texted me a few minutes later and told me that dr. shariff could see me at 1:15. the doctor wanted me to have some bloodwork done first and had put in an order. my sister told me i could go to the walk-in that’s about ten minutes from me and have it done there. (i live in a small area where there is one major hospital, hartford hospital, and the smaller hospital where my sister works—charlotte hungerford—as well as all of the walk-in clinics and most of the doctors in the area are affiliated with it. note that my old neurologist isn’t affiliated with either; she’s affiliated with yale. fuck yale.) she said dr. shariff would take me on as a new patient and would send a referral to the charlotte neurology department.

i should mention that my sister is the most wonderful person and really is so smart and i am so fortunate to have her in my life.

i got the bloodwork done and went to the appointment with dr. shariff. she asked me about my neurological issues, saying we would start with those today and deal with everything else at another appointment. as i answered her questions and told her about my epilepsy and headaches and the “care” i got from my old neurologist, she was more and more appalled with every word. 

“so i know you’re here mainly because you need a refill of your medication and because you want a referral to chh neurology and your doctor’s office wouldn’t give a referral, which is just odd,” she said. “if you haven’t seen your neurologist in two years, who has been prescribing your meds?”

i shrugged. “she has.”

“o-kay. when was the last time you had bloodwork done?”

“before today, i think six years ago.”

she looked horrified. “that should be done at least once a year. how about the last CT scan?”

“same time. but that wasn’t her. that was at charlotte after i went to the ER in an ambulance after six seizures.”

her eyes widened. “o-kay. and the last MRI?”

“i don’t remember.”

“last EEG?”

‘honestly, i think probably in 2004 or so. it was a sleep-deprived EEG so back when i was still having sleep-state seizures. they were always sleep-state when i started having seizures but then they switched to wake-state when i was, like, 18 or 19.”

“but you said your last two seizures were sleep-state,” she said, looking at her notes. “did you tell your old neurologist that?”

“yeah, she didn’t seem too concerned.”

“okay. just to be clear, that’s very concerning.”

i nodded because, yeah, i know.

she asked more questions, took more notes, and looked more and more horrified with every answer.

“i’ll send the prescriptions to CVS for you so you’ll have your medications—”

“i only need the keppra. she- they refilled the lamictal.”

“—weird. i’ll refill the keppra then. and i’ll send a referral to charlotte so we can get you some new care. it sounds like your care has been negligent, and not on your part. i’m going to order an MRI too.”

so now i have a primary care doctor who seems really nice. i have an MRI scheduled for march 18th and an appointment with a new neurologist on march 31st. and i have my medicine.

last night, i felt a migraine coming on about halfway through the class i was teaching. i don’t know how i finished the class—i really don’t know how i didn’t pass out—but i was glad my dad and stepmom were in my class because they drove me home. i took today off work and i’m still lying in bed with a headache. this took me like six hours to write because i had to keep stopping to sleep for a bit. 

this MRI and appointment with the new doctor can’t come soon enough.

[orbemnews]

Pregnant Women Get Conflicting Advice on Covid-19 Vaccines Pregnant women looking for guidance on Covid-19 vaccines are facing the kind of confusion that has dogged the pandemic from the start: The world’s leading public health organizations — the U.S. Centers for Disease Control and Prevention, and the World Health Organization — are offering contradictory advice. Neither organization explicitly forbids or encourages immunizing pregnant women. But weighing the same limited studies, they provide different recommendations. The C.D.C.’s advisory committee urged pregnant women to consult with their doctors before rolling up their sleeves — a decision applauded by several women’s health organizations because it kept decision making in the hands of the expectant mothers. The W.H.O. recommended that pregnant women not receive the vaccine, unless they were at high risk for Covid because of work exposures or chronic conditions. It issued guidance on the Moderna vaccine on Tuesday, stirring uncertainty among women and doctors on social media. (Earlier this month, it published similar guidance on the Pfizer-BioNTech vaccine.) Several experts expressed dismay at the W.H.O.’s stance, saying the risks to pregnant women from Covid were far greater than any theoretical harm from the vaccines. “There are no documented risks to the fetus, there’s no theoretical risks, there’s no risk in animal studies,” from the vaccines, said Dr. Anne Lyerly, a bioethicist at the University of North Carolina, Chapel Hill. “The more that I think about it, the more disappointed and sad I feel about it.” The difference of opinion between the C.D.C. and the W.H.O. is not rooted in scientific evidence, but the lack of it: Pregnant women have been barred from participating in clinical trials of the vaccines, a decision in line with a long tradition of excluding pregnant women from biomedical research, but one that is now being challenged. While the rationale is ostensibly to protect women and their unborn children, barring pregnant women from studies pushes the risk out of the carefully controlled environment of a clinical trial and into the real world. The practice has forced patients and providers to weigh sensitive, worrisome issues with little hard data about safety or effectiveness. Vaccines are generally considered to be safe, and pregnant women have been urged to be immunized for influenza and other diseases since the 1960s, even in the absence of rigorous clinical trials to test them. “As obstetricians we are often faced with difficult decisions about using interventions in pregnancy that have not been properly tested in pregnancy,” said Dr. Denise Jamieson, an obstetrician at Emory University in Atlanta and a member of the Covid expert group at the American College of Obstetrics and Gynecologists. The college strongly advocated including pregnant and breastfeeding women in the vaccine trials. “What many people miss is that there are risks to doing nothing,” Dr. Jamieson said. “Not offering pregnant women the opportunity to be vaccinated and protect themselves, where there are known and severe risks of Covid amplified by pregnancy, is not a wise strategy.” The uncertainty isn’t limited to Covid vaccines: Many if not most medications, including widely used drugs, have never been tested in pregnant women. It can take years or decades for adverse side effects to come to light in the absence of a study with a control group for comparison. “This isn’t a story about the W.H.O. or other people advising against vaccination in pregnancy,” said Carleigh Krubiner, a policy fellow at the Center for Global Development and a principal investigator for the Pregnancy Research Ethics for Vaccines, Epidemics and New Technologies project (PREVENT). “It’s a story about the failure to timely and appropriately include pregnant women in vaccination studies.” Saying she understood the commitment of the W.H.O. and other advisory bodies to rely on scientific studies, Dr. Krubiner added: “The reality is that we don’t yet have the data on these vaccinations in pregnancy, and it’s very difficult without that data to come out and give a full-throated recommendation in support.” The C.D.C. and the W.H.O. have offered dissonant advice many times over the course of the pandemic — most notably on the usefulness of masks and the possibility of the virus traveling by air indoors. In a statement, the C.D.C. said on Thursday that based on how the Pfizer-BioNTech and Moderna vaccines work, “they are unlikely to pose a specific risk for pregnant women.” The C.D.C.’s recommendation may make sense for the United States, where women may easily be able to consult with their health care providers, said Joachim Hombach, a health adviser to the W.H.O. on immunizations. But the W.H.O. provides guidance to many low- and middle-income countries where women do not have access to doctors or nurses, he said. The W.H.O.’s recommendation was also made “in the context of limited supply” of the vaccines, Dr. Hombach said. “I don’t think the language is discouraging, but the language is stating the facts.” Pfizer did not include pregnant women in its initial clinical trials because it followed the policies outlined by the Food and Drug Administration to first conduct developmental and reproductive toxicity studies, said Jerica Pitts, a spokeswoman for the company. Pfizer and Moderna both provided results from toxicity studies in pregnant rats to the F.D.A. in December. Pfizer plans to begin a clinical study in pregnant women in the first half of 2021, Ms. Pitts said. Moderna is establishing a registry to record outcomes in pregnant women who receive its vaccine, according to Colleen Hussey, a spokeswoman for the company. Critics of the companies’ decisions to exclude pregnant women from trials say the reproductive toxicity studies could have been carried out much earlier — as soon as promising vaccine candidates were identified. The companies should have added a protocol to enroll pregnant women once it was clear the vaccines’ benefits outweighed potential harm, Dr. Krubiner said. “It’s hard to understand why that delay is happening and why it wasn’t initiated sooner,” she said. “The bigger issue is, we’re going to have lost months by the time they start them.” Akiko Iwasaki, an immunologist at Yale University who has advocated immunizations for pregnant women questioned the underlying issue that prompted the W.H.O.’s decision. “Whatever it is, I wish the W.H.O. would be more transparent in their reasons behind this recommendation,” she said. “Women’s lives depend on it.” Covid-19 Vaccines › Answers to Your Vaccine Questions Am I eligible for the Covid vaccine in my state? Currently more than 150 million people — almost half the population — are eligible to be vaccinated. But each state makes the final decision about who goes first. The nation’s 21 million health care workers and three million residents of long-term care facilities were the first to qualify. In mid-January, federal officials urged all states to open up eligibility to everyone 65 and older and to adults of any age with medical conditions that put them at high risk of becoming seriously ill or dying from Covid-19. Adults in the general population are at the back of the line. If federal and state health officials can clear up bottlenecks in vaccine distribution, everyone 16 and older will become eligible as early as this spring or early summer. The vaccine hasn’t been approved in children, although studies are underway. It may be months before a vaccine is available for anyone under the age of 16. Go to your state health website for up-to-date information on vaccination policies in your area Is the vaccine free? You should not have to pay anything out of pocket to get the vaccine, although you will be asked for insurance information. If you don’t have insurance, you should still be given the vaccine at no charge. Congress passed legislation this spring that bars insurers from applying any cost sharing, such as a co-payment or deductible. It layered on additional protections barring pharmacies, doctors and hospitals from billing patients, including those who are uninsured. Even so, health experts do worry that patients might stumble into loopholes that leave them vulnerable to surprise bills. This could happen to those who are charged a doctor visit fee along with their vaccine, or Americans who have certain types of health coverage that do not fall under the new rules. If you get your vaccine from a doctor’s office or urgent care clinic, talk to them about potential hidden charges. To be sure you won’t get a surprise bill, the best bet is to get your vaccine at a health department vaccination site or a local pharmacy once the shots become more widely available. Can I choose which vaccine I get? How long will the vaccine last? Will I need another one next year? That is to be determined. It’s possible that Covid-19 vaccinations will become an annual event, just like the flu shot. Or it may be that the benefits of the vaccine last longer than a year. We have to wait to see how durable the protection from the vaccines is. To determine this, researchers are going to be tracking vaccinated people to look for “breakthrough cases” — those people who get sick with Covid-19 despite vaccination. That is a sign of weakening protection and will give researchers clues about how long the vaccine lasts. They will also be monitoring levels of antibodies and T cells in the blood of vaccinated people to determine whether and when a booster shot might be needed. It’s conceivable that people may need boosters every few months, once a year or only every few years. It’s just a matter of waiting for the data. Will my employer require vaccinations? Where can I find out more? The toxicity data released by Pfizer and Moderna in December found no harmful effects from the vaccines to pregnant rats — evidence cited by the W.H.O. in its guidance. One extreme consequence of a conservative approach to vaccines played out during the Ebola epidemic in the Democratic Republic of Congo, when health workers offered a vaccine for the disease to all frontline workers and contacts of people confirmed to have it — except if they were pregnant or breastfeeding. Without the vaccine, 98 percent of pregnant women who were infected with the Ebola virus died. The rules were changed following a public outcry but, by then, many pregnant women had died, Dr. Lyerly said. Covid-19 has also proved to be dangerous to pregnant women. A large C.D.C. study published in November found that pregnant women with Covid who were symptomatic were significantly more likely to be hospitalized or to die when compared with nonpregnant women who also had Covid symptoms. The evidence prompted agency officials to add pregnancy to the list of conditions that heighten the risk of severe disease and death from Covid. The C.D.C. has set up a smartphone application called v-safe to solicit reports of side effects from immunized people. About 15,000 pregnant women have enrolled in the registry so far, the agency’s immunization committee reported on Wednesday. “I think that’s our best chance of getting safety data rapidly,” Dr. Jamieson said. Britain initially starkly recommended against Covid vaccines for pregnant women, but has since revised its guidance to authorize inoculating pregnant women who are frontline workers or otherwise at high risk. “I’m hoping the W.H.O. will reconsider as well,” Dr. Jamieson said. Some experts said the recommendations are not as divergent as they may appear at first glance. “The C.D.C. is more inclined to say that pregnant women should have access to the vaccine, but should discuss their circumstances with their providers,” said Dr. Ana Langer, a reproductive health expert who leads the Women and Health Initiative at Harvard’s T.H. Chan School of Public Health. “The W.H.O.’s interim recommendation says that women who are at particularly high risk of exposure or getting Covid should get the vaccine. So where’s the big difference here?” Denise Grady contributed reporting. Source link Orbem News #Advice #conflicting #Covid19 #Pregnant #Vaccines #Women

[phawareglobal]

Shannon Reitor - phaware® interview 208

Pediatric PH caregiver Shannon Reitor discusses her son Adam’s pulmonary hypertension diagnosis. Shannon details lobbying the Canadian government, the challenge of navigating side-effects of unapproved treatments for children with PH and how Adam became the first child in Canada to go on IV therapy.

My name is Shannon Reitor. I am from Edmonton, Alberta, in Canada, and my connection to pulmonary hypertension is through my son, Adam. He was diagnosed the day before his second birthday.

I always knew something was wrong with him. I did the typical parent fight for years, where you go in and you know something [is wrong]. They're not growing, they're not thriving the way they should be. Eventually, he wound up getting bronchial pneumonia, and that led to a hospital visit where they heard a murmur, and that's actually the direction that we wound up going in. So bronchial pneumonia was no longer a concern. Cardiology now was. It got brought in, and the day before his second birthday was his echo cardiogram, so it was his unofficial diagnosis. Two weeks later, was his heart catheterization where he received his official diagnosis.

I remember after that echocardiogram appointment, the nurses actually came to me and asked me if I was okay to drive home and I was like, "Oh, yeah, I'm fine, I'm just going to go have a glass [of wine]," and she looked at me and she said, "With the news you just had, you deserve a bottle." That's when I realized that I'd better find out a bit more about the direction we were about to go in.

The first thing that wound up happening was we obviously had to start putting him onto medications. So now you're dealing with medications, side effects. Unfortunately for him, one of them - bosentan, was not a positive one. He had every severe side effect you could get, which is not common in kids, so we had to figure out a way to switch that under Canadian laws. There weren't really any drugs that were available, so we had to do some special circumstances just to get ambrisentan in. It wasn't even available yet.

Usually, what we have to do is we have to lobby to the government. Through the government, if they give us approval, in order to bring it in, that means that they're going to financially cover it, because it's not under any of the pharmacy guidelines with how much it costs. Then we have to get the actual pharmaceutical company to approve that they're even going to send it, because now they're sending it to a doctor that now has to be responsible for it that is not under their guidelines and their care that have already been approved.

Once we get through that - and it takes time, they wind up sending it out to us. Most of the time it's under trials, so that way we don't wind up having to have it come out of pocket. Then they can use the data that they get from it towards their studies.

He was on subcutaneous Remodulin (treprostinil) for a couple of years. The sites then started to fall apart. He was within the first three kids in Canada to ever go on it. I know it wasn't popular in the United States yet, so really, we didn't know what we were doing or what long-term effects were going to be. His skin didn't hold up and it rejected all the sites. We were lucky if we got three days, so he became the first kid in Canada to go on IV Remodulin (treprostinil), which was a game-changer. It changed how well he felt. He wasn't in pain all the time, so we've experienced both sides of how that goes.

Unfortunately, his skin eventually didn't hold those lines, so we took a risk and he went pump-free for a while, while we fought for selexipag, that had been FDA-approved. It had been Health Canada-approved, but it wasn't available for us to get it, again, due to the politics behind it all.

I had to actually send in all the pictures of all of his gross sites and all of his line infections and everything, and it went to head office, and they sent it to us on them. They didn't even want the government involved by that point in time. They realized that some kids, they just are better candidates for it to try it out, because it wasn't a matter of there were other drugs available. There was nothing else available.

It's usually pretty frightening in the sense that we don't have any precedent set. We don't know what we're doing, we're just winging it and hoping that it works. In that sense, it's terrifying, but then once all the kids afterward start following and they start doing really well, then it feels good to know that him starting on something showed information, at least enough of it that they felt confident to have more kids get that kind of help.

Don't give up hope, because even eight years ago it was a lot harder than it is today, and if we can come this far within the last eight years, I can only imagine what the next couple are going to look like. It's not going to take long before our kids are running around just like anybody else.

I'm Shannon Reitor, and I'm aware that I'm rare.

Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Never miss an episode with the phaware® podcast app. Follow us @phaware on Facebook, Twitter, Instagram, YouTube & Linkedin Engage for a cure: www.phaware.global/donate #phaware #LifeInPurple #PHUnited #ClinicalTrials @antidote_me @PHACanada 

Listen and View more on the official phaware™ podcast site

[news-totalcannabissolutions-blog]

A Bethlehem woman's uneasy journey from opioids to cannabis

By: Binghui Huang Contact Reporter Of The Morning Call

July 13, 2018

Toma Giuffre has binders full of newspaper clippings, personally annotated doctor’s notes, letters from lawmakers — all pieces of a puzzle she’s been trying to solve for decades: How to make the pain go away.

For the last year, Giuffre, 74, has been collecting every published scrap of information on medical cannabis she can find, underlining the articles in different colors as she’s studied them time and again. When the state’s first medical marijuana dispensary opened in Bethlehem in January, she went to Keystone Canna Remedies’ informational sessions on every topic.

“I researched this marijuana like I was paid by the hour,” she said.

Like millions of Americans, Giuffre takes opioids such as Vicodin and morphine to reduce her chronic pain. And until recently, she had a prescription for fentanyl, the powerful opioid responsible for a surge in overdose deaths across the country. She has horrible withdrawal symptoms if she misses doses of her pain pills and has had to increase the dosage over the years to feel the same relief. And she’s afraid that the wrong mix of the many medications — including sleeping pills, muscle relaxants, blood pressure medication and others — could kill her. She’s read about such cases too many times.

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See More She wants to swap the powerful opioids for medical marijuana, her “last hope.”

MEDICAL MARIJUANA Toma Giuffre read all the information she could find about medical marijuana before seeking treatment. (MADELEINE COOK / THE MORNING CALL) Proponents of medical marijuana say it can be an alternative to opioid painkillers, which have spurred a deadly national epidemic that’s claimed almost a life a day in the Lehigh Valley. But because of the country’s century-old ban on cannabis, there hasn’t been enough research conducted on prescribing marijuana for medical use. There are no standards for prescribing different strains and dosages of marijuana for various health conditions, which means there is more experimentation with cannabis in treatment plans than there is with other types of medication.

This year, Pennsylvania became the first state to approve marijuana to treat opioid use disorder — when opioid medication adversely affects the quality of a person’s life.

Giuffre has waited almost a lifetime for a new option to treat her pain. Since a car accident in her late 20s, pain has spoiled decades of her life. Everyday things become difficult, such as getting dressed and writing with a pen. She has her doctor’s approval to use medical marijuana to manage her pain and to treat various other conditions. But because of the limited understanding of cannabis, she has to be patient through numerous trials and errors to find the right strain, dosage and method of taking the medication.

Cannabis could mean better years ahead.

Paying out of pocket Retired from nursing and teaching, Giuffre spends her days learning about medical cannabis, taking her miniature poodle, Shakespeare, to his vet appointments, taking herself to her doctor’s appointments and tending her garden.

At just over 5 feet tall and only 104 pounds, she’s frail but has a big personality and unrelenting resilience.

Giuffre loves hot-pink and finely embroidered skirts but not her waistline, which she jokingly grumbles about. Her toes sparkle with glitter she sprinkled to cover the medication she puts on her toe nails. And she’s protective of Shakespeare, putting herself between him and an agitated pit bull during a walk.

MEDICAL MARIJUANA Toma Giuffre, a retired nurse, looks at photos of herself before an accident brought chronic pain and the need for medical marijuana. (MADELEINE COOK / THE MORNING CALL) In her red-brick house in Bethlehem, the walls are adorned with photos of her family and dogs, including the one before Shakespeare.

“I’ve got something to offer the world,” Giuffre says.

Cannabis, she believes, may be the key to that better life.

State health officials share Giuffre’s hope that cannabis offers an alternative to opioids for pain management, as well as a way to wean off opioids.

In April, data published in the Journal of the American Medical Association showed states that adopted medical marijuana programs also saw declines in opioid prescriptions.

Medicare Part D prescriptions for opioids decreased by an average of 2.11 million daily doses a year when a state legalized medical marijuana, according to the study of Medicare opioid prescriptions in medical marijuana states. It’s an indication that legalizing the plant for medical use could curb widespread opioid use.

But the data are far from conclusive. The study suggests a connection, but that doesn’t necessarily mean the availability of medical cannabis caused people to stop using opioids, said Ziva Cooper, a cannabis researcher at Columbia University.

Marijuana research has produced varied results, she said. For example, one study showed cannabis may increase opioid use. Another showed that combined with an opioid, cannabis might improve pain management.

“We don’t know,” Cooper said. “It’s important to track patients over time.”

Because of limited research, pharmacies are generally experimenting with doses and types of cannabis for different ailments, she said. They also are still trying to determine how cannabis interacts with opioids and other medication. So those like Giuffre, who are in cannabis treatment, may have to go through a trial-and-error period.

Doctors who prescribe cannabis glean from experience what dosage would be effective, Cooper said, “but there’s no handbook, no desk reference for cannabis for how much to give patients.”

Cannabis research is highly regulated because it’s still illegal under federal law. For example, the University of Mississippi is the only place where researchers can get cannabis.

Pharmacies such as Keystone Canna Remedies in Bethlehem have to slowly increase dosage, especially for elderly patients who have never smoked, said Victor Guadagnino, an administrator at the Bethlehem dispensary.

Medication typically takes more than a decade of research and clinical trials before getting federal approval for patient use. And what’s made available is standardized, so patients in different states receive the same medication, with clear prescription guidelines.

None of that is true for cannabis, which varies from state to state and comes with no clear prescription guideline, said Bradley Carlson, Keystone Canna Remedies’ pharmacy director. So doctors and pharmacists are trying, with limited information, to tailor prescriptions to patients.

Giuffre has tried different kinds of cannabis: pens, capsules and dosages for the last few months. But she had never smoked pot before. So when she took home two temporary vape pens with cappuccino and blueberry flavors in March, it was a new experience.

She inhaled the smoke one to three times every four hours as prescribed — but she felt no different. So her dosage was increased, which made her feel stoned, dulling her pain as well as her personality.

“I felt zoned out. I felt like I couldn’t get off the couch,” she said. “I want my activity. I want my force.”

Eventually, the pharmacist and doctor figured out the sweet spot, enough to clear her pain but not cloud her mind. And for the first time for as long as she could remember, she was free of pain. The feeling was so liberating, she stayed in bed for hours.

“That was beautiful,” she said.

Now she is working with her pain management doctor on the next step, cutting down her opioids, a change that terrifies her. Cut too deeply and she may feel excruciating pain.

She isn’t sure she can completely stop using opioids, but the success so far with medical marijuana gives her hope for better years ahead.

The biggest obstacle is finding a way to pay for it. Insurance companies and government payers such as Medicare don’t cover the medication because it’s illegal under federal law and regulatory agencies consider it experimental. The state plans to start a financial assistance program but has not provided a timeline for its launch.

So even though Giuffre pays for private insurance on top of her Medicare to fill coverage gaps, all her medical marijuana expenses are out of pocket.

Giuffre hasn’t added up the expenses. So far, she’s paid for several vape pens and bottles of marijuana capsules, likely racking up hundreds of dollars, a big cost for a retiree on a fixed income.

To make it work, she’s cut down on personal expenses.

“I need it now,” she said, “so I can have some happy times.”

[jasonheart1]

Some fear changes as US weighs pot medicine

COLORADO SPRINGS, Colo. (AP) — Some American parents who for years have used cannabis to treat severe forms of epilepsy in their children are feeling more cautious than celebratory as U.S. regulators near a decision on whether to approve the first drug derived from the marijuana plant.

The U.S. Food and Drug Administration is expected to issue a decision by the end of the month on the drug Epidiolex, made by GW Pharmaceuticals. It's a purified form of cannabidiol — a component of cannabis that doesn't get users high — to treat Dravet and Lennox-Gastaut syndromes in kids. Both forms of epilepsy are rare.

Cannabidiol's effect on a variety of health conditions is frequently touted, but there is still little evidence to back up advocates' personal experiences. The U.S. Drug Enforcement Administration has long categorized cannabis as a Schedule I drug, a category with "no currently accepted medical use and a high potential for abuse." That strictly limits research on potential medical uses for cannabis or the chemicals in it, including cannabidiol, or CBD.

But for years, parents desperate to find anything to help their children have turned to the marijuana-based products made legal by a growing number of states.

Meagan Patrick is among the parents using CBD to treat symptoms in their children. She moved from Maine to Colorado in 2014 so she could legally get CBD for her now-5-year-old daughter, Addelyn, who was born with a brain malformation that causes seizures.

"My child was dying, and we needed to do something," Patrick said.

As for the potential approval of a pharmaceutical based on CBD, she said fear is her first reaction.

"I want to make sure that her right to continue using what works for her is protected, first and foremost. That's my job as her mom," Patrick said.

Advocates like Patrick became particularly concerned when GW Pharmaceuticals' U.S. commercial business, Greenwich Biosciences, began quietly lobbying to change states' legal definition of marijuana, beginning in 2017 with proposals in Nebraska and South Dakota.

Some worried the company's attempt to ensure its product could be legally prescribed and sold by pharmacies would have a side effect: curtailing medical marijuana programs already operating in more than two dozen states.

The proposals generally sought to remove CBD from states' legal definition of marijuana, allowing it to be prescribed by doctors and supplied by pharmacies. But the change only applies to products that have FDA approval.

Neither Nebraska nor South Dakota allows medical use of marijuana, and activists accused the company of trying to shut down future access to products containing cannabidiol but lacking FDA approval.

Britain-based GW Pharmaceuticals never intended for the changes to affect other marijuana products, but they are necessary to allow Epidiolex to be sold in pharmacies if approved, spokesman Stephen Schultz said.

He would not discuss other places where the company will seek changes to state law. The Associated Press confirmed that lobbyists representing Greenwich Biosciences backed legislation in California and Colorado this year.

"As a company, we understand there's a significant business building up," Schultz said. "All we want to do is make sure our product is accessible."

Industry lobbyists in those states said they take company officials at their word, but they still insisted on protective language ensuring that recreational or medical marijuana, cannabidiol, hemp and other products derived from cannabis plants won't be affected by the changes sought by GW Pharmaceuticals.

Patrick Goggin, an attorney who focuses on industrial hemp issues in California, said the company would run into trouble if it tried to "lock up access" to marijuana-derived products beyond FDA-approved drugs.

"People need to have options and choices," he said. "That's the battle here."

Legal experts say the changes are logical. Some states' laws specifically prohibit any product derived from the marijuana plant from being sold in pharmacies. The FDA has approved synthetic versions of another cannabis ingredient for medical purposes but has never approved marijuana or hemp for any medical use.

A panel of FDA advisers in April unanimously recommended the agency approve Epidiolex for the treatment of severe seizures in children with epilepsy, conditions that are otherwise difficult to treat. It's not clear why CBD reduces seizures in some patients, but the panel based its recommendation on three studies showing significant reduction in children with two forms of epilepsy.

Denver-based attorney Christian Sederberg, who worked on the GW Pharmaceuticals-backed legislation in Colorado on behalf of the marijuana industry, said all forms of marijuana can exist together.

"The future of the industry is showing itself here," Sederberg said. "There's going to be the pharmaceutical lane, the nutraceutical (food-as-medicine) lane, the adult-use lane. This shows how that's all coming together."

Alex and Jenny Inman said they won't switch to Epidiolex if it becomes available, though their son Lukas has Lennox-Gastaut syndrome.

Alex, an information technology professional, and Jenny, a preschool teacher, said it took some at-home experimentation to find the right combination of doctor-prescribed medication, CBD and THC — the component that gives marijuana users a high — that seemed to help Lukas with his seizures.

"What makes me a little bit nervous about this is that there's sort of a psyche amongst patients that, 'Here's this pill, and this pill will solve things,' right? It works differently for different people," Alex Inman said.

The Inmans moved from Maryland to Colorado in 2015 after doctors recommended a second brain surgery for Lukas' seizures. The couple and other parents and advocates for CBD said children respond differently to a variety of strains.

The Realm of Caring Foundation, an organization co-founded by Paige Figi, whose daughter Charlotte's name is attached to the CBD oil Charlotte's Web, said it maintains a registry of about 46,000 people worldwide who use CBD.

For Heather Jackson, who said her son Zaki, now 15, benefited from CBD and who co-founded the foundation, Epidiolex's approval means insurers will begin paying for treatment with a cannabis-derived product.

"That might be a nice option for some families who, you know, really want to receive a prescription who are going to only listen to the person in the white coat," Jackson said.

from Local News https://www.thedenverchannel.com/news/local-news/some-fear-changes-to-state-laws-as-us-weighs-pot-medicine