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type2diabetestreatments-blog · 7 years

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Lilly Diabetes Hosts Insulin Pricing and Access Workshop

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Lilly Diabetes Hosts Insulin Pricing and Access Workshop

In the front lobby of Lilly’s corporate headquarters in Indianapolis stands a 12-foot tall statue of a mother holding her child in her arms, sick and starving due to lack of insulin.

It’s an artistic rendering of a real-life mother who took her son to insulin's birthplace in Toronto once upon a time, before the medication's discovery in 1921, when a diabetes diagnosis was a death sentence. As the Lilly folks describe it today, the statute is a visible reminder of what they are all about – changing the field of science and getting people the medication they need to stay healthy, even stay alive.

Unfortunately, the reality in 2017 is an incredible crisis in insulin affordability and access for many with diabetes, to the extent that people in our D-Community are losing everything because of lack of insulin, and facing life-and-death situations in some cases.

All of this was the big, sobering, anger-inducing backdrop of a recent Lilly-hosted “insulin access workshop” on April 20, where the Pharma giant brought in a dozen diabetes advocates to discuss action plans to start addressing this growing crisis.

This gathering came just before Lilly’s first quarter earnings call on April 24, when the company reported that just for its 20-year-old Humalog insulin alone, sales revenue in the U.S. went up 24% in the first months of this year, which generated all kinds of “positive momentum” on the company's revenue. Just seeing those figures made many clinch our fists in rage, and it's tough to stomach -- particularly as this issue is hitting some so hard, as shown in a NBC Nightly News segment aired earlier this week and the sad story of Shane Patrick Boyle's death recently.

No one is happy with the current state of affairs, even those in the top brass at Lilly Diabetes. It was clear that the people present at this meeting care, deeply. Just like many of us, they have personal D-connections -- one on the marketing team who just marked her 20th dia-versary with T1D, another on the advocacy and payer side with a husband with type 1, and several others who shared stories recognizing need and hardship in the D-community.

“It is a crime, I agree with you on this, and we are not OK with the status quo,” said Lilly’s Jordyn Wells, who works on the payer and corporate marketing team. “There are going to be a number of solutions that exist in this space – some may come from Pharma, or from others in the industry, some will be organizations, and from the Diabetes Community. Only by partnering are we going to get to the other side.”

There were roughly two dozen people in the room – 12 patients from the Diabetes Online Community, and the rest representing Lilly Diabetes (@LillyDiabetes). The DOC advocates present, including myself, were:

Cherise Shockley (@DiabetesSocMed)

Meri Schuhmacher-Jackson (@Our3DLife)

Rick Phillips (@lawrPhil)

Kelly Kunik (@diabetesalish)

Tom Karlya (@diabetesdad)

Scott Johnson (@scottkjohnson)

Mike Hoskins (@DiabetesMine)

Ally Ferlito (@Verylightnosuga)

Mila Ferrer (@dulce_guerrero)

Bennet Dunlap (@Badshoe)

Amelia Dmowska (@DiatribeNews)

Christel Marchand Aprigliano (@DPAC)

Attending on behalf of the 'Mine, my role was simple: Observe and report, to help inform those who couldn’t be there in person, and to assure that everything I might contribute to the conversation came from my personal POV as a longtime type 1. The group was mainly using Twitter hashtags #InsulinPrices and #InsulinAccess.

(Disclosure: I declined Lilly’s offer to fly me from Detroit to Indy, instead choosing to drive my own car and pay for my own gas, meals and parking. Lilly did pay for two nights at the Le Meridien Hotel in downtown Indy, as well as some hors d’oevres, snacks, and beverages. As always, Lilly was clear there was no pressure or expectation for us to write anything in their interest; everything reported here is my own observation and thought based on my personal experience.)

In a nutshell, what I saw gave me hope that we have the ability to influence this insulin access and drug pricing crisis instead of waiting on Congress or other leaders to weigh in. The blame game can take us round and round, but while that’s happening the advocacy plans being put into motion are potential game-changers, IMHO – even if they aren’t perfect or end-all-be-all fixes on their own.

It was a full daylong agenda. Here’s a recap of my takeaways from the Lilly workshop, for whatever it’s worth:

Building Momentum and Connecting Dots

To be clear, this Lilly workshop was a follow-up to efforts that have been underway over the past year, in particular a larger insulin pricing round-table in November 2016 coordinated by the National Diabetes Volunteer Leadership Council (NDVLC). Read our recap of that round-table here.

Certainly, not every player involved in this issue could or would be present at these meetings, including the much-decried Pharmacy Benefit Managers (PBMs) who have so much influence but remain aloof. And by no means did anyone present believe that this single meeting would solve the world’s problems or fix this issue once and for all. There are no silver bullets here, Folks.

Over the past several months, both Lilly and NDVLC have been among those in the D-advocacy community talking with payers and working to better understand the market dynamics of how the pricing scheme all fits together. Specifically, what can be done from an economic and business model standpoint to influence tangible change?

George Huntley, a longtime type 1 himself who serves as treasurer of the non-profit NDVLC, spoke at the Lilly workshop about what the group has learned so far. As many of these discussions go, the theme was “it’s complicated” -- as demonstrated by the maze of players who all have a hand in setting drug prices.

“This hasn’t happened overnight, it’s been a slow evolution of plan design over the course of the past 15 years,” he said. “Now, it’s reached a tipping point where it’s outrageous – no, we are passed that tipping point. But now, it’s incumbent upon us to express that outrage. Yelling about it is a great start, but there is a difference between being an educated consumer and just a consumer on fire.”

So, what can we do?

'Need to Do Better'

On Lilly's behalf, Jordyn Wells explained that most of what Lilly has been able to introduce into the marketplace recently are basically "band-aids" that clearly are “not ideal,” but are a starting point. Those include better promoting the Patient Assistance Programs (PAPs) that can help certain eligible people in need, to the BlinkHealth partnership offering limited discounts of up to 40% at CVS Health pharmacies to those eligible uninsured or under-insured PWDs.

Very true, and while some in the room were vocal about how inadequate these programs are for many in the D-Community, there was a recognition that they're just pieces of a much larger puzzle. Wells said these programs are short-term solutions that fit into larger systematic efforts to help those in need.

Taking it to Employers

There were a lot of stats and slides presented at this workshop, but the bottom line was: insurance isn’t helping patients the way that it should. One slide showed that in 2016, 57% of people with diabetes who use insulin were exposed to unexpected, high or full costs at the pharmacy at some point during the year. Another set of market research stats showed 51% of people in the U.S. are on commercial, employer-provided plans (including those that are self-funded by employers).

Then consider the telling figure that PBMs are responsible for 75%-80% of insured lives in this country – as PBMs create many of the employer health plans offered to employees each year. As non-medical switching becomes more common (go on Lantus instead of Levemir, because they’re "essentially the same"), this need to change the conversation at the PBM level is ever more important.

And who has the most sway over PBMs? Yep, employers do – because they are the clients who have a choice in which PBM they ultimately hire for the job. If employees aren’t happy and communicate that, and employers listen and take that message to the PBMs, the hope is that we can start effectuating change.

Lilly’s Ideas

Here are the ideas Lilly presented for employer-focused reform:

Manufacturers must take more responsibility in pushing for point-of-sale benefits from rebates. More work needs to be done to pass along these insider "rebates" to consumers/patients.

First dollar obligations before deductibles. Employers can contribute to health savings or reimbursement accounts on Jan. 1, rather than gradually paying into those accounts throughout the year. This could help employees pay for insulin from the first day of the year. Again, not addressing the true pricing problem, but it’s something that could help.

Exempt insulin from deductibles: This is something Lilly’s already been doing as a large employer, but it wants to encourage more employers to adopt: insulin could/should be categorized as one of the essential, life-or-death meds that isn’t subject to a high-deductible, but rather just a flat co-pay. Wells said the high-deductible plan system was setup to drive people to cheaper generics, and to go to primary care doctors instead of higher-cost ERs. “But with insulin, it doesn’t make sense. Insulin should be treated differently.”

“(This is) something we can do tomorrow -- go to employers to start playing the puppet-strings and advocating PBMs for this change," Wells said.

NDVLC Campaign

The NDVLC also presented its related campaign that will be rolling out over the course of the next month or so.

Based on the NDVLC research, the cost for an employer to tweak benefit plan designs via PBMs equates to an average 22 cents per person per plan.

“If they were smart politically, they’d do this immediately,” Huntley said. "This would help quiet the firestorm over PBMs.”

Asked about unintended downstream consequences, he said there are hardly any relating to financial impacts on PBMs. They make $12 Billion (!) a year, whereas a PWD who pays $1,400 a month for insulin is facing serious, life-changing health consequences.

“Our system has evolved to a point where now, employers are hurting their people,” Huntley said. “They are the ones in the free market who can do this, and they don’t know they can do this. Employers are assuming they are helping their people and that the system’s built correctly, but it’s not. So as consumers and employees, we must raise our voices to make them stand up to PBMs about benefit plan design. Because the human cost is not acceptable.”

DPAC’s Advocacy Tools

Affordable Insulin Project: Another exciting development was hearing DPAC founder Christel Aprigliano describe one of the many projects they've been working on since November – creating an online portal for our D-Community to get more involved in advocacy on this, appropriately named the Affordable Insulin Project. This is being rolled out in the next weeks, we're told, and is aimed at providing resources/tools/awareness on how the system all works, ways PWDs can easily approach and take this message to their employers, and what other policy advocacy tools might exist for insurance reform on the state and Congressional levels.

Advocacy App: While it wasn’t specifically connected to this workshop, just days before the Lilly forum DPAC launched a new mobile app designed to help people reach out via social media, phone or snail mail to their Congressional leaders in DC.

All of these tools feed into the fight for better healthcare reform and affordable insulin on a national level, legislative calls for pricing transparency and lower drug prices, suing Big Insulin and PBMs in court to put more pressure on them for disclosure and transparency, and creating a needed media blitz to keep this whole issue on the general public’s radar.

Health Literacy, Consumerism and Stigma

Of course, there's the reality that employer-focused advocacy isn’t foolproof, as this recent Bloomberg story shows. There are legitimate questions about stigma and workplace discrimination, and whether PWDs are comfortable with even sharing with coworkers or HR folk that they have diabetes, let alone advocating for company-wide insurance changes for their own benefit. And there's the issue of simply not being informed enough about the insurance coverage system, benefits design and legal rights.

On these challenges, the diaTribe Foundation presented a new six-part series that it’s about to launch at the end of May and run through year’s end to help tackle stigma and health literacy issues. The topics they have in mind at this point are:

One idea born from the brainstorm discussion was the possibility of Lilly helping to pay for materials that could be printed and displayed in free clinics/ churches/ community centers, or even kiosks that could be set up to view and print materials for people who might not have Internet access at home.

Everyone in the D-Community is invited to be a part of what diaTribe is developing here and submit their ideas. Those interested can contact: [email protected].

Overall, the day’s agenda was packaged as a “top-down, bottom-up approach” that encouraged tactics we can start implementing immediately -- even with the understanding that the affordability and access crisis is huge, so we have to be patient with incremental change.

Balancing the Blame and PR

Clearly, Lilly is funding some of this – from a grant to DPAC to help develop the mobile community advocacy app to supporting the diaTribe series described above.

Sure, they do share some of the blame in creating the problem, but it's become increasingly clear to us over the past two years just how complex the system is, and that pointing the finger solely at the Big Insulin makers is neither accurate nor productive.

No one is wearing white gloves, and Big Insulin certainly should not be portrayed as innocent victims.

Yet the truth is that Lilly and other companies do good in this world, alongside some bad. They trains nurses in schools to manage diabetes and treat dangerous hypos; they donate lots of insulin globally to developing counties; and they help send kids to D-camps, college, and conferences while also raising national awareness about diabetes through marketing, PR and celebrity spokes-folks campaigns. Not to mention, they support non-profits and various D-advocacy resources and even startups such as Beta Bionics creating the iLET closed loop system.

For all of those activities, we say Thank You. And it behooves us as patients to work alongside them to try to find positive solutions. They should be providing funds for all this! They make plenty of profit here, so let's let them foot the bill for much of the work that needs to be done.

It’s easy to be mad. And we all are.

But it’s not always easy to think critically and have a rational, intelligent conversation about upsetting topics, and then find some constructive action to take. I'm personally proud of our Diabetes Community for keeping our wits about us and pushing ahead, even in the most heart-breaking moments, like when we lose some of our kin because they don't have access to affordable insulin.

We must all work together to change this, to reach a day when none of us are forced to carry the weight of tragedy due to the inaccessibility of life-sustaining insulin.

Disclaimer: Content created by the Diabetes Mine team. For more details click here.

Disclaimer

This content is created for Diabetes Mine, a consumer health blog focused on the diabetes community. The content is not medically reviewed and doesn't adhere to Healthline's editorial guidelines. For more information about Healthline's partnership with Diabetes Mine, please click here.

Type 2 Diabetes Treatment Type 2 Diabetes Diet Diabetes Destroyer Reviews Original Article

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When Diabetes Doesn’t Win

New Post has been published on http://type2diabetestreatment.net/healthy-tips/when-diabetes-doesnt-win/

When Diabetes Doesn’t Win

Dear Parent,

My name is diabetes and you may have just met me or you may have known me for years. I am not welcome and I know that I’m not.

The young lady in the picture met me when she was two. On this day, April 5th, she turns 27, old enough to know things but still young enough to say her age without a problem (women understand this more than men). She is one of those young ladies I do not want to talk about because if you become like her, you make my life miserable. But I assure you that she will have a happy birthday today because she hates me more than I attack her. In as much as I have tried, I stop her from nothing.

Her name is Kaitlyn.

Kaitlyn created a mantra for herself. It was not given to her by her parents, she thought of it all on her own. Kaitlyn stated, “I have diabetes, diabetes is not who I am.” Wow, that hurts. I like to own people. I like to make people operate under fear. I like people to doubt life, others, and their own-self. If I had a middle name, my name would be Diabetes Doubt because I love havoc based upon doubt.

Kaitlyn is one of my failure stories. She has not let diabetes stop her from anything from her days growing up, to high school, to where she is today. She danced, could ski, ran track, became a class officer, was in the prom and homecoming court, was a class officer, loved and enjoyed life and excelled in all she tried. Please do not look at Kaitlyn or listen to her. She is not a friend to me, diabetes.

She has lectured, graduated school, taught, served as a first responder, become a nurse (in the diabetes field no less—what a pain she is to me), and even got engaged. Diabetes does not like happiness. She travels for fun and teaches many young people how to live with me; like she has. She is so resistant to me.

Sure, every now and again I have a good day with her and make her feel bad either physically, emotionally, or both. But I need to try real hard with her because she knows too much. But if you ask her, she will tell you that she does not know enough yet and she is always trying to learn more. She is such a pain.

Her parents were like that too. They even had the nerve to say, and tell others, that education is the equalizer for me. I hate people who keep trying to learn. I like people to feel sorry for themselves. I like people to give up. I like people to just learn the bare minimum and try to ‘skate by with me.’ I have a field day with those types of people.

But not like Kaitlyn, nor her family. I tried so hard that I even took residence with Kaitlyn’s younger brother but even then, that family does not stop. And I try really hard to ruin their lives. And even with their ups and downs, they support each other, they have each other’s backs and boy, I wish they would stop trying to learn more. There are others like them out there and I don’t like them either… those who say that I just will not do in their life.

She has had me for 25 of her 27 years. I hate her, I hate her family. I hate those like them. They will not let me win. Don’t be like them. Please.

Sincerely, Diabetes

Photo Credit: Tom Karlya

Diabetes Type 2 Tips Diabetes Escape Plan Does Diabetes Destroyer Really Work? Original Article

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type2diabetestreatments-blog · 8 years

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Stop Screaming at Yourself Over an A1C Result

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Stop Screaming at Yourself Over an A1C Result

Someday it will dawn on people, and I’m not sure when or how, that the blood glucose numbers one deals with are not numbers of judgment and if you allow them to be… well, then you will have to deal with them.

“OMG, what a horrible number.”

“How did I let that A1C get so high? What kind of parent am I?”

“Just got a bad report, her A1C was 9.0… boy did I get an earful.”

Seriously?

Hear me and hear me loudly — there is a huge difference between a gauge and a report card. We always and in all ways looked at A1C and other diabetes’ numbers as gauges to help us rectify whatever situation we were in. We never got worked up about the numbers and I see no reason why that should change especially if there is such an incredible effort to do one’s best.

When an A1C number is high, figure out why it is, and adjust accordingly. Not with a self-lashing or belittled approach by anyone else (including your doc). The number is 9.0 and that seems a bit high. Why is it high? What do we need to do to lower it? Is there anything that can be done differently to lower it?

Nothing more, nothing less. A gauge. Correct and move on. Period.

’nuff said.

Photo Credit: Tom Karlya

Diabetes Type 2 Tips Diabetes Escape Plan Does Diabetes Destroyer Really Work? Original Article

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The Cost of Diabetes: High Deductible Plans

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The Cost of Diabetes: High Deductible Plans

High deductible insurance plans have become common and while this generally means Americans pay less each month for their premium, it does mean many have had to learn how to adjust to new and real challenges.

A recent study showed that more people with chronic illnesses, like diabetes, are now covered by health insurance thanks to the Affordable Care Act (Obamacare).

Just being covered is not always enough, however. Nathan Nascimento, a senior policy advisor at Freedom Partners Chamber of Commerce stated in an article for the National Review, “While monthly premiums can aptly be described as how much it costs to have insurance, deductibles are how much it costs to use it.” People with diabetes are voicing the trouble they are having when it comes to using the coverage they have in the first place.

What is to Blame for High Deductibles?

There is a debate going on about what caused these high deductible plans to increase dramatically in recent years. While some pin the blame on the Affordable Care Act due to the timing of the act with their deductible increase, others aren’t so sure. Recently, DeAnn Friedholm, the director of health reform for Consumers Union told USA Today that “Companies have been cutting back on benefits and cutting costs for decades.”

Michael Hiltzik of the LA Times wrote that those blaming the ACA for rising deductibles were just using it as a “scapegoat” and he brought up a Kaiser Family Foundations 2012 report showing that “the percentage of workers in employer plans with a single deductible of $1,000 or higher had risen to 34% from 10% since 2006; in the same period the percentage with deductibles of $2,000 of higher had risen to 14% from 3%. The average deductibles for all employees had nearly doubled to $1,097 from $584.” The ACA was enacted in 2010.

About half of all Americans get their health insurance from their employer. Companies are dealing with high health care costs and are increasingly choosing to offer only high deductible plans to their employees which leaves many Americans paying more than we ever have in the past.

How People with Diabetes Are Handling High Deductibles

Regardless of how or why deductibles are rising, the effects on Americans living with chronic illnesses has been among the toughest to bear.

At the extreme end of hard experiences, some people with diabetes are going so far as not taking insulin–which is expensive even with insurance coverage and can cost over $500 a vial if paying before a deductible is met due to rising insulin costs.

When asked how these high deductibles might affect patient care, Jennifer Shine Dyer, a pediatric endocrinologist in Columbus, Ohio wrote that this situation is “Definitely a problem and has led to DKA in several of these cases.” DKA is diabetic ketoacidosis, a life-threatening condition which may develop very quickly in the absence or lack of sufficient insulin in some people with diabetes and in any person with type 1 diabetes.

Leonard Auter, a man living with type 1 diabetes in Colorado says that he has seen his health care deductible and costs rise while also observing less coverage in return. He uses his access to a Health Savings Account to anticipate his needs over the year but admits that although his he hasn’t let his diabetes care take a hit, he does make an effort not to worry too much since stress from worrying raises blood sugar levels.

Regarding the future of health care in this country, Auter writes, “I’m worried about the uncertainty surrounding the replacement of the new health care plan and ACA and knowing it’s going to take time and worried about insurance costs in the meantime until they do get it figured out and replaced.”

Kristi Brashier has a daughter living with type 1 diabetes. She says that recently, her deductible and co-pays have dramatically increased and sacrifices have had to be made. Bashier wrote that “We quit buying glucagon kits and epi-pens because buying insulin took priority.” She added that she went from paying $130 per month for insurance to half her take-home pay now–$1200 a month just to cover her and her children. Her husband has his own insurance through his employer which is also expensive.

Bashier has even entertained the idea of being uninsured and “just paying the penalty and negotiating the medical costs” but hasn’t because of her daughter Katie’s diabetes.

She echoes something that has been springing up lately when she wondered if, “Now more of the poor can access what they need but not much of the middle class.” Dr. Praveen Arla has observed this trend telling USA Today that access to care between poor and middle-class has “flip-flopped” as middle-class working Americans have been avoiding health care due to high deductibles.

Bashier shares how it can feel “discouraging” to see others who are either uninsured or on medicaid pay “two or three dollars for 7 vials of insulin even though they don’t need that many.”

Leola Collins lives with type 2 diabetes in Grand Rapids, Michigan. She too has insurance from her employer but states that luckily, “The annual increases haven’t been too significant.” Collins writes that she has “automatic shipment for [most of her diabetes supplies] and the vendors will ship even if I owe.” She does struggle with her $2,500 per year deductible however and has had to set-up various payment arrangements.

Collins, as well as Auter did emphasize that they feel fortunate for the health care they do have since there are others who have it worse.

What Can Be Done About High Deductibles?

Tom Karlya is the Vice President of the Diabetes Research Institute Foundation and is a dad of two kids with type 1 diabetes.

Karlya explains that when it comes down to it, “diabetes care is a business”. He strongly believes that a way must be found to “increase competition among and between the businesses to our advantage,” and that until we do, “we will have little to do with what happens to the cost.”

An example, he writes, is the rising costs of insulin. Karlya states that “all the players” need to gather to discuss the issue and find solutions, together. By all players he means stakeholders, retailers, producers, manufacturers and even some elected officials.

As a diabetes dad and diabetes advocate, Karlya says “It’s time to dig our heels and say no more….all the millions of us.”

Photo Credit: iStock Photos

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Don’t Let Diabetes WAG You!

New Post has been published on http://type2diabetestreatment.net/healthy-tips/dont-let-diabetes-wag-you/

Don’t Let Diabetes WAG You!

Many times I am asked, “What’s the best way to handle this disease?” Now many people will tell you that there is no wrong way or right way, but I disagree. Sometimes I turn my head and cringe when I read things because I really do not engage in FB banter about anything.

There seems to be, sometimes, this feeling that anything goes in the world of diabetes. If it works for my child, then that makes it okay.

Now… just hold on a minute.

I’m a firm believer in doing what is right, and I’m a firm believer in doing what works for your child. My caution is what you base your decisions upon when you choose an approach to this disease. If you do your due diligence in finding out as much as you can about a particular aspect of this disease; how to manage it, how to handle it… then more power to you,

But know this—you can not ‘skate’ with this disease. It doest not care what you ‘think’ you should do, it knows what it does. Have you ever heard the phrase ‘WAG’ with your kids and their blood glucose levels? Excuse my French but WAG means Wild Ass Guess. Kids will just give a WAG when you ask. The problem is that more and more, I am seeing people’s approach to this disease as a WAG.

You cannot afford to guess.

You must find out.

I can share story upon story about people who really knew what they were doing and ended up with not the best results. If you are not at your best when it comes to knowledge, you might get along for a while but your child will pay the price. Each issue should be dealt with as soon as feasible. If you think you need to know more, find out. Read. Ask questions. Ask more questions. Things with T1D do not ‘just get better’ they get better because you work at it. They get better because you learn.

They get better because you act.

So, no; I’m not going to tell you what you should do with your child. But I am going to tell you that I have learned that there are many, many, many parents waiting to help you, but you have to ask. Learn what there is to know and keep learning. Know. Don’t let diabetes WAG the patient. Knowledge is the equalizer… never forget that point.

Photo Credit: Tom Karlya and Shannon Smith (Pixabay)

Diabetes Type 2 Tips Diabetes Escape Plan Does Diabetes Destroyer Really Work? Original Article

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type2diabetestreatments-blog · 8 years

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Losing Faith in a Cure

New Post has been published on http://type2diabetestreatment.net/diabetes-mellitus/losing-faith-in-a-cure/

Losing Faith in a Cure

Editor's Note: Allison Blass, my new assistant editor, was moved by what she heard and saw at the JDRF Research Summit last weekend and what she read thereafter. But maybe not in the way you'd think...

I remember when I stopped believing that I would see a cure for diabetes.

It was a spring afternoon when I was in college. I was sitting on the back deck of this coffee shop I frequented. It was a covered deck, you see, and so you could enjoy the somewhat warm weather of an Oregon spring day without risking being in the wrong place at the wrong time when a raincloud passed over campus. I could sit there for hours, drink coffee, chat with my friends, pretend to study. It was on one of these days that I was sitting in an uncomfortable plastic chair, glued to the pages of James Hirsch's Cheating Destiny. I actually don't have a copy of the book with me (it's safely tucked away in storage), but what I do remember is reading about his discussions with researchers and how he learned just how complicated diabetes is, and just how much researchers felt they didn't understand. Tears began streaming down my face. In those moments, the cure shifted from a tangible dream to a distant hope.

Losing faith in something you've believed for so long is traumatic. There is utter shock. Complete disbelief. You argue that it couldn't possibly be true and you present a laundry list of perfectly logical reasons why this cannot be so. The people delivering this horrid news are people you are supposed to trust, and they have taken something precious away from you. There is some anger at being fooled for so long, and then a resignation, and a hollowness. A void you're unsure how to fill. What is my motivation?

Earlier this week, I read the diaTribe's interview with Jeffrey Brewer, the president and CEO of the Juvenile Diabetes Research Foundation, an organization that I have raised several thousand dollars for over the last 17 years. I had also attended a JDRF Research Summit over the weekend, where the most exciting breakthroughs, it seemed, were coming from the artificial pancreas. A tool. Another tool. At first, I merely skimmed Jeffrey's interview with Kelly Close and Co. I didn't really give much thought to it.

Then I saw this thread on Tom Karlya's Facebook wall. Isn't Facebook where the most interesting debates are happening these days? I knew Tom worked for a competing organization, the Diabetes Research Institute, and so I was curious to see what he had to say, but he said nothing. He merely opened up the conversation. Many parents were angry with this article. Many of them were upset that JDRF was moving away from the "cure" and that they were going to be more focused on adults and technologies for living with diabetes. No more priority on the cure? You might as well have told them that JDRF was disbanding and that all the remaining money was being funneled into scholarships for clown college.

At first, I was confused. I didn't understand how people could be so upset with JDRF's decision. Well, that's not entirely true. I know a lot of people who don't like the things JDRF does, and sometimes I get it and other times I think they're making a big deal out of nothing. But these people seemed to have at least some respect for JDRF. So why the sudden change? Mostly it because Mr. Brewer said this:

"The first very big transition is we're moving away from the over reliance on the cure as the central part of our message and funding."

Of course, he quickly followed up with: "This does not mean JDRF is any less committed in its focus to find a cure, but we have some work to do in order to get there. And in the meantime, there are many people who will live with diabetes for a relatively long period of time. We have a responsibility and an opportunity to help them live better, healthier, longer, and less stressful lives. And so one of the big changes that we're undergoing is focusing on improving the lives of people living with diabetes on a day-to-day basis."

Several parents on forums that I've read have said that JDRF's mission was always for a "cure." And they're right. That is always what they said. But you want to know something? Things change! In the decades since JDRF was founded and that mission statement was created, we have learned more and more about how diabetes works. One thing we have also discovered is just how much we don't know. We've learned just how damn complicated and unwieldy this disease can be. When information is learned, goals are modified. New strategies and tactics are implemented. The cure has not been erased from ambitions, but there have been additions made. Some people might think that the cure is getting farther and farther out of grasp. The truth is that it has always been far from our reach. The problem was that we had no idea how far. We didn't even have the map! Now we're starting to plod along and get our bearings. So yes, the cure is very far away because now we know just how far we have to go.

One father told me that if a cure is found, then all the money spent on new technology will have been completely wasted. He might be right. If I had a crystal ball, I could know for sure which direction to go. But I don't. None of us knows when a cure is coming. None of us knows what future lies in front of us. No researcher should ever promise a deadline, because they have been wrong time and again. I don't know if you should exclusively fund raise for JDRF. Or if you should only fund raise for DRI or Faustman or Joslin or whomever. I don't know who has the answer. Personally, I try to give as much money as I can to as many organizations as I can. If you don't like the idea of giving your money to an organization that isn't fully dedicated to finding a cure, that's fine. Don't let anyone tell you otherwise. But I will add that not everyone has the same confidence as you. You can count yourself among the lucky.

What I do know is that I want to play with my children someday without having to be the one to stop and get a juice box. What I want is for my fiancÃ© to not worry about whether or not I will wake up in the morning. What I want is for my eyes to stay clear and my heart to beat strong and my legs to carry me to the far reaches of the world. Some may say that technology is "good enough" now, but do you really want to stay exactly as we are today? Are you really satisfied with the accuracy of your glucose meter, of your continuous glucose monitor? Are you really satisfied with the functionality of your insulin pump? Are you really OK with spiking after breakfast? Are you really fine with wondering if your body will wake you up when your BG is too low or if you will sleep through your CGM alarm? Wouldn't it be nice if there were just a few more improvements to our lives?

I know that all this technology will, at the end of the day, benefit Big Pharma. And I get that they may be seen as "evil" because they make money off of us being sick. But I don't really see another way around it. I wish I knew why JDRF has to give money to Pharma in order to get them to do things for us patients, but apparently that's how it works. Maybe someone can leave a comment and explain it. What I do know is that Big Pharma, so far, has saved my life. Yes, they make a profit off it and yes, the whole price thing and insurance thing and healthcare reform thing suck (but that's another story) and yes, they are a little slow on the uptake when it comes to changes they need to make to their products (I'm looking at you, Minimed). But they are the ones who make what we need to stay alive. Without them, we're sunk. And no, I don't believe they are trying to keep a cure from us, because seriously...? A cure is not coming for free. Someone will be making a pretty penny off whatever they come up with.

Listen, I get it. You're a parent. Your No. 1 concern is to end the suffering of your child. If I were a mother of a child with diabetes, I would probably feel the exact same way. It is heartbreaking to watch a child having to prick their finger or wear an insulin pump that's as big as their head. Nevertheless, not all of us have the same faith as you. Some of us just can't believe that a cure is around the corner. We try. Trust me, we try. There are moments of anger and frustration and I just want to scream and throw my glucose meter against the wall so hard that it shatters. Sometimes I dream about the day that I won't have diabetes anymore, when the only reason I go onto Twitter is to talk about the latest Hollywood blockbuster or find out what's happening in the world. I dream about not rolling over onto my insulin pump when I'm doing crunches at the gym. I pray that my children will never, ever have to save me.

But I just don't think that day will come in my lifetime. And to the people who agree with me, the people who say, "I don't know if I believe anymore either," then at least we know someone understands. I want a cure so badly it hurts, but I also know that I may never see it. The weight of diabetes, the weight of doing this on my own, everyday, forever, is almost more than I can bear sometimes. I don't want to do this anymore. I need help. I don't know what that help will look like. But if that's in the automation of an artificial pancreas or a pill that I take everyday to jumpstart my beta cells or something else entirely, then I fully support it.

I want a cure and a better life today. The two do not have to be mutually exclusive.

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Celebrating Dad Bloggers - Happy Father's Day!

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Celebrating Dad Bloggers - Happy Father's Day!

Let's be real: when it comes to taking care of kids with diabetes, it can seem like a mom's world. We know that dads love their kids just as much, but sometimes it can seem like moms are the only ones going to doctor's appointments, picking up prescriptions, and negotiating 504 plans. Women also tend to be more comfortable talking about their emotions, so it's no surprise that we have a huge community of D-mom bloggers.

But there are plenty of dads involved in our D-community too! And with Father's Day coming this Sunday, we wanted to spotlight some of these fabulous fathers who are sharing their stories and offering unique perspectives on raising a child with diabetes — and why they think it's important for dads to get in the blogging (or tweeting) game! Please enjoy our "mini-interviews" with highlighted D-dads today:

Red Maxwell, North Carolina

Dad to Miller, 17, and Cassie, 15 (diagnosed at age 18 months)

Blogs at Daddybetes, tweets at @rpmax

DM) Why do you think it's important for fathers to be involved in the diabetes online community?

RM) Moms and daughters and women with diabetes are much better at communicating than dads. I think it's just their nature to be better socially than men. If more dads like me joined the conversation, I think that it would not only help other dads who take care of children with diabetes, it would also let moms know what it's like from our perspective.

What do you personally get out of blogging / tweeting? How has it made an impact in your life?

Blogging and tweeting have helped me share diabetes information that I've stumbled upon or painstakingly researched. Once I learn something, it's nice to be able to help someone else who may be wondering the same thing. I remember feeling so lost and hopeless after Cassie was first diagnosed, and I wished there were better online resources back then.

What does your child with diabetes think of your blogging? Do they think it's cool or do they get embarrassed? Do you have any restrictions for what you blog about?

If I'm posting something that may be sensitive, I'll ask her first before publishing it. One time I wanted to put up a thank you note to her mom that she had written, and she hesitated. I waited a week after she had enough time to think about it, and she gave me her consent. It's not only important to respect your child's right to privacy, you have to respect their wishes too.

Bennet Dunlap, Pennsylvania

Dad to four teens, two with diabetes (diagnosed at age 10 and 7, respectively)

Blogs at YDMV, tweets at @BadShoe

Why did you start blogging about diabetes?

I was involved with a number of diabetes-related forums, ADA, CWD and some others. After our first CWD convention my daughter told me that I should write a blog because she felt I had a different perspective on diabetes — I'm still not sure if it's a good thing to have your kid say you have a 'different perspective.'

Do you think it makes you a better caretaker of your children? If so, how?

Oh hell yes! I think that we are at a point where being a better caretaker is very heavily involved with trusting and supporting the kids steps toward independence. I know that much of my thinking on the importance of that is a direct result of CWD's Friends for Life and some of my fellow bloggers.

What advice do you have for a dad who might be hesitant to start blogging or tweeting?

Blogging and tweeting are not anywhere as significant as being there through diabetes. Joe Solowiejczyk, CDE and guru, often talks about the how easy it is for a CDE to pull a family together for training as an indicator of future success dealing with diabetes. In the most basic terms, does dad show up? So I am less concerned that dads blog or tweet than that they bring the A-game to diabetes. Be involved, go to Friends for Life, know what is up, be dad, embarrass the kids with ugly golf shorts. Social media doesn't matter, as long as dad is not hesitant to deal with diabetes.

That said, I welcome all the crazy dads online. I have friends around the world I have not met. There is the one dude in Texas I would really like to have a few beers with. I welcome more into the ranks!

Steve Gilbert, North Carolina

Dad to John, 20, Krista, 14, and Lia, 9 (diagnosed at age 7)

Blogs at Without Envy

Why did you start blogging about diabetes?

At the time of Lia's diagnosis, I was putting what I thought were the finishing touches on a dramatic novel I was writing. The news sent me into an emotional tailspin that made fiction feel second-rate to the tragedy that was happening here in the real world. So I started writing about diabetes and how it was affecting our family.

What do you get out of blogging / tweeting? How has it made an impact in your life?

Writing is a passion of mine. Before I quit the corporate world to pursue writing full-time (which, by the way, I still am pursuing, sad to say!), I would wake at four in the morning to write. With Lia now having diabetes, I was waking for other, more substantive reasons. And rather than lie in the bed and give those thoughts free, chaotic reign, I corralled them by night and day into what was for me something meaningful and truthful. I felt publishing those efforts on a blog would first and foremost keep me honest about my emotions and just maybe it would put me in touch — which it has — with others who felt the same way.

Do you think it makes you a better caretaker of your children? If so, how?

I don't believe I — or anyone else — needs to blog or write about diabetes to be a good caretaker. In my opinion, health has little to do with tapping into your creativity, unless of course, you are working with science toward treatment or finding a cure. What it does do is give me the means to express and understand how I feel about diabetes, and in particular, how I feel about my daughter and my family in relation to diabetes. Thinking about Lia and diabetes and our family in that raw, truthful way allows me to write honestly, and helps me to understand and appreciate what this disease means to them from their perspective, not just mine.

Tom Karlya, New York

Dad to TJ, 24, Kaitlyn, 21 (diagnosed at age 2), and Robert, 15 (diagnosed at age 13)

Blogs at DiabetesDad, tweets at @Diabetesdad

Why did you start blogging about diabetes?

Two things I remember vividly: First, I felt our experiences, even though more personal than strictly coming from a medical professional, could be just as valuable to another family going through what we went through. The second thing I remember was that I felt an obligation to be part of the process of the same community that was a help to us during the early years and that became the Online Community. We have come so far since that time but it is still people helping people.

What do you get out of blogging / tweeting? How has it made an impact in your life?

The satisfaction that I am making a difference. I feel, personally, that I belong to a community — a community dedicated to helping others. I need to look at myself in the mirror and say I am doing everything I can to both find a cure for my kids and also that I am learning everything I can to help them. In as much as I write online, it is the feedback I receive that empowers me to realize that together we can change the devastation of diabetes into a controllable disease that one day will be eradicated.

Do you think it makes you a better caretaker of your children? If so, how?

Absolutely, the knowledge from the online community is so incredibly useful. It is a live encyclopedia of diabetes information. In addition, if there are any questions, there is always someone online who I can ask, "Hey what do you know about...?" and almost instantaneously a response is given.

Scott Benner, New Jersey

Dad to Cole, 11, and Arden, 7 (diagnosed at age 2)

Blogs at Arden's Day, tweets at @ArdensDay

What do you get out of blogging / tweeting? How has it made an impact in your life?

In the beginning, I was trying to spread awareness. Along the way I realized that my experiences were becoming a sort of roadmap for newly diagnosed families and a comfort to others. It's a relief to know that the issues you experience aren't unique or an indication that you are failing as a parent.

Why do you think it's important for fathers to be involved in the diabetes online community?

There is a real opportunity to gain a male perspective in a situation that is generally female-dominated. If my 40 years on the planet have taught me one thing, it's that men and woman rarely see things the same way. I think multiple perspectives are particularly valuable when managing type 1. It's nice to have an opinion that doesn't mirror your own. Let's face it, woman are mostly responsible for the day-to-day stuff and it's difficult to spend every day with type 1 and then have your spouse come home and start making suggestions. It's tough to take that advice at times. Having other dads involved and sharing is a great way to hear other thoughts without that crazy feeling that you're being judged. Let me tell you, Girls, I understand more than you know. Nothing is easy about raising children and running a household.

What advice do you have for a dad who might be hesitant to start?

If you think that sharing your feelings and experiences is something you'd like to try, I say get to it. I was the type of person who wanted to take care of things on my own. I speak to a lot of mothers on the phone and they all have one thing in common: they're scared. The simple act of allowing yourself to be afraid and then understanding that you aren't the only one that feels these things releases so much anxiety. I hear that my blog helps people quite a bit and it's one of the most rewarding sentiments that I've ever received. If I'm being honest, I get so much more in return than I give. You should blog, even if you only do it a short time. It'll change your experience with all of this diabetes parenting stuff for the better. It'll reward you in ways you can't yet imagine.

Thanks to ALL the dads rocking in the DOC. And we hope you have a wonderful Father's Day, free of D-drama! 🙂

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Amazing Advocates: Canadian D-Mom on Phoenixes and Tats

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Amazing Advocates: Canadian D-Mom on Phoenixes and Tats

Grassroots advocates, we love you! That's why we recently launched a new series to showcase these oft-overlooked activists working so hard out "in the trenches" to raise awareness and help fellow patients.

Today, we're talking with Canadian Barbara Wagstaff (aka Barb Marche), founder of the community website aptly named

Diabetes Advocacy.

By D'Mine Columnist / Correspondent Wil Dubois

Canadian Barbara Wagstaff created the site Diabetes Advocacy following what can only be described as the harrowing, and near-fatal diagnosis experience of her two-year-old son in 2000. She created the site because she "could not find enough info and support" for persons affected by diabetes at the time.

DM) You've done some pretty amazing things, among them successfully taking on the Canadian tax code to the benefit of PWDs; raising diabetes awareness through calendars and booklets; and creating a web portal with news feeds, research updates, diabetes product news, expert answers, a ton of informative content, and even a personal blog! What do you regard as your greatest contribution to the diabetes community?

BW) Difficult question! I think probably the greatest contribution would have to be the website and the blog, because from there everything else flows. Over the years it has grown I have reached so many people worldwide. It has given me a platform to share ideas, offer support, share misery, and be a launching pad for change.

How big a crew do you have helping you run Diabetes Advocacy?

This is a one-woman show. Besides acting as my son's pancreas, dealing with the site and the blog, I also help with various aspects of a heavy equipment business run by my fiancÃ©.

Your logo includes the diabetes blue circle and a Phoenix. Why the Phoenix?

We all know that the Phoenix is a beautiful bird that rises from the ashes. I began to think about life with diabetes as the same thing. You go through life as a normal person. All is pretty good.

Suddenly diabetes arrives on your doorstep, and life as you know it crashes and burns. Over time, we can and do rise up out of those ashes and learn how to live life with diabetes fully again, but stronger and more beautiful than we thought possible.

You have a diabetes support and awareness tattoo, and a diabetes tattoo gallery on your site. Did you pioneer the idea of diabetes loved-ones getting support and awareness tattoos?

I don't think I pioneered the idea, but as someone told me, I pioneered the awareness of them. I made the getting a tattoo a media event. I offered a place to display them and to share ideas. It has taken on a life of its own after that.

Where do you think the greatest need for advocacy lies?

For me, awareness is the root of everything. If people learn and understand what diabetes really is and what it entails then, I think, that they are more likely to be empathetic and open their wallets—be these government wallets or private wallets—for cure donations.I want people to understand that we are not neurotic people with no lives. They need to know that diabetes is not about take 1 injection and go on with your day. It's so much more and does not end when the lights go out at night.

If you had a gazillion dollars to spend on diabetes, where would you put the money?

My head is not holding its breath for a cure. My heart would love a cure! Can I split my gazillion in half? I would put half my money into diabetes supplies for those who need them. I would want everyone to have access to the best supplies and devices available regardless of address or income. I would want the rest to go to the DRI (Diabetes Research Institute in Florida).

Your son is almost grown up and will be off to college in a few years. Which is harder, preparing him or preparing yourself?

ME!!!! I am working on breathing each day. I am terrified of him being away from me and having his own life, not because I don't want him to be independent, but for fear of all that I know. My son is very laid back. He does not like to be reminded about diabetes in his daily life. I am trying to teach him as best as I can. It's a challenge. He will rise to it, but the amount of grey hair and wine involved to get me there could be incredible!

If each person touched by diabetes could only do one thing to advance the cause, what do you think it should be?

My favorite reply to this comes from my friend Tom Karlya. He tells people "just don't do nothing." I love this! There are many aspects to helping with diabetes. I know some amazing fundraisers who create incredible events and raise staggering amounts of money. I am not one of those people. There are other people who take up the challenges of various causes and work to educate people. I am that type of person. Each person must find their niche. The biggest thing is to find your "thing," and don't do nothing.

Hear, Hear, Barb! Thank you for that.

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Around the Diabetes Blogosphere — November 2012 Edition

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Around the Diabetes Blogosphere — November 2012 Edition

The year is coming to a close, and it's hard to believe we now only have one month left of 2012! Time flies when you're having fun, and the many happy posts we found around the diabetes blogosphere show that's what we've all been doing this past month!

Of course, November is the biggest D-Month of the year, in which diabetes awareness is on the world's stage. With World Diabetes Day itself on Nov. 14 and many other events happening the rest of the month, the Diabetes Online Community was abuzz with activity...

A post by Jess Collins over at Me and D caught our eye as a tribute to insulin co-creator Frederick Banting, who would have celebrated a birthday on WDD!

We were also very impressed with what Joslin Diabetes Center did in bringing some key DOC voices together, with its blogger project designed to raise awareness about living with diabetes. Each blogger wrote four posts about their own life experiences, and also helped raise money for Joslin's High Hopes Fund for cure and treatment research.

The Diabetes Hands Foundation had a strong month too, of course, marking news that our community reached the Big Blue Test goal of 20,000 entries before the deadline on WDD. They also shared the exciting news that the DHF Big Blue Test program was recognized as the work of a "top social media-savvy nonprofit using the Web creatively to make a difference in healthcare." Very cool!

Now in its second year, the World Diabetes Day Postcard Exchange project had 901 participants from across the world! We loved the creativity in all the postcards displayed on the project site. Heaps of thanks to our friend and D-blogger Lee Ann Thill who worked tirelessly to make this initiative a success for our entire community's benefit!

This month was also a heavy time for diabetes conferences, with a number of different events held across the globe. We liked this post from fellow PWD Simon Boots about the first-ever D-Summit in Australia. The Diabetes Technology Society Meeting was held in Bethesda, MD, and there was also the Global Diabetes Summit in Ohio that we covered here. Then of course, there was our very own DiabetesMine Innovation Summit, blogged about by D-Dad Bennet Dunlap over at Your Diabetes May Vary, and also by advocate and software engineer Doug Kanter at his blog, Becoming Diabetic.

As happens sometimes in November, our friend George "The Ninjabetic" Simmons unveiled a new project on World Diabetes Day. This year, we got a laugh (to the point of tears, for me) from checking out the first episode of NinjabeticTV!! We can't wait to see more, George!

The U.S. also wrapped up its 2012 election season, and Medtronic got creative by putting a diabetes spin on the election theme. The D-Community got to elect one of three "diabetes ambassadors," and once the votes were tallied the D-ambassador-elect made a special video with professional skydiver and fellow PWD Michael Craig to celebrate the victory.

Fellow type 1 Scott Johnson has a message for glucose meter makers, and he uses both words and photos to show manufacturers what he wants them to keep in mind when designing devices. Now, that's what we call keeping the PWD perspective in the spotlight. Thanks, Scott!

D-Dad Tom Karlya writes what many PWDs and D-parents think: If you don't have diabetes, then you really don't know what it's like to go through what we do. He takes the notion further, adding balanced perspective to give us an inspirational message for the times. Thanks for the great post, Tom!

Every PWD sometimes imagines a world without diabetes, but for the parent that's an even more sensitive and gut-wrenching topic - especially for those of us who fear passing diabetes on to our children. Type 1 D-blogger Scott E. explored the non-D world over at Rollin in the D, as did Kerri Sparling over at Six Until Me.

Ever doubt the power of the DOC in helping people feel better and do better in managing their health? Well, Jess Collins over at Me and D has ANOTHER powerful post called Real Tangible Hope that shows how these friendships and her overall support system has helped her. This brought a wide smile to our faces, so happy to read this... Keep it up, Jess!

Taking fingerstick tests and logging blood sugars isn't much fun (at all!), and some of us have cut some corners to convince our docs through the years that we are in fact doing BG checks -- even when we're not. But as PWD Alexis Pollak points out at I Run On Insulin, we can't hide the truth thanks to the A1C... and that number can reflect some of where we've been at different points in our lives.

Hey Diabetes Product Pitchers and Marketing Execs: our friend and fellow D-blogger Kim Vlasnik at Texting My Pancreas wants you to know something: The words you choose matter. Take note!

What exactly constitutes "normal"? Well, D-wife Sandy Floyd over at A Diabetic Spouse asks that question when looking at her relationship with her type 1 husband, Vince. Thanks for the thought-provoking post, Sandy.

Type 1 blogger Ryan at The Diabetic Cyclist found some inspiration recently, realizing just how much heart it takes sometimes in living with diabetes. He's keeping that in mind while tackling marathons and cycling events, as he works to prove that anything is possible for PWDs!

We share our favorites every month, but we want to include yours, too! Please send along your D-post picks for the month of December to us via email. We look forward to hearing from you.

Disclaimer: Content created by the Diabetes Mine team. For more details click here.

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