#Black Medical Professionals

[ausetkmt]

New Alzheimer's drugs bring hope. But not equally for all patients.

https://www.washingtonpost.com/health/2024/01/29/alzheimers-new-drugs-black-patients-leqembi/

ABINGTON, Pa. — Wrapped in a purple blanket, Robert Williford settles into a quiet corner of a bustling neurology clinic, an IV line delivering a colorless liquid into his left arm.

The 67-year-old, who has early Alzheimer’s disease, is getting his initial dose of Leqembi. The drug is the first to clearly slow the fatal neurodegenerative ailment that afflicts 6.7 million older Americans, though the benefits may be modest. The retired social worker, one of the first African Americans to receive the treatment, hopes it will ease his forgetfulness so “I drive my wife less crazy.”

But as Williford and his doctors embark on this treatment, they are doing so with scant scientific data about how the medication might work in people of color. In the pivotal clinical trial for the drug, Black patients globallyaccounted for only 47 of the 1,795 participants — about 2.6 percent. For U.S. trial sites, the percentage was 4.5 percent.

The proportion of Black enrollees was similarly low for Eli Lilly Alzheimer’sdrug, called donanemab, expected to be cleared by the Food and Drug Administration in coming months. Black people make up more than 13 percent of the U.S. population.

The paltry data for the new class of groundbreaking drugs, which strip a sticky substance called amyloid beta from the brain, has ignited an intense debate among researchers and clinicians. Will the medications — the first glimmer of hope after years of failure — be as beneficial for African Americans as for White patients?

“Are these drugs going to work in non-Whites? And particularly in Blacks? We just don’t have enough data, I don’t think,” said Suzanne E. Schindler, a clinical neurologist and dementia specialist at Washington University in St. Louis. “In general, the default is that they will work the same in everybody, but we don’t really know that for sure.”

The situation casts a spotlight yet again on the decades-long failure of researchers to reflect the increasingly diverse character of the patient population in the United States, and underscores the stark disparities in Alzheimer’s treatment and care. Black Americans develop the disease and related dementias at twice the rate of their White counterparts, but are less likely to receive specialized care and are diagnosed at later stages, studies show. That’s an urgent problem considering that the new drugs must be used early to have an effect.

In addition, a perplexing new issue appears to be contributing to low Black enrollment in trials and is fueling a debate among experts about the role of race, genetics and other factors. To qualify for the main trial for Leqembi — developed by the Japanese pharmaceutical giant Eisai and the biotechnology company Biogen of Cambridge, Mass. — participants were required to have elevated levels of brain amyloid, a defining characteristic of Alzheimer’s, and symptoms such as memory loss.

But brain scans showed that the African American volunteers were less likely to have excess amyloid than White patients and thus were excluded from the trial at higher rates. Almost half of Black applicants failed to meet the amyloid threshold, compared with 22 percent of White volunteers, according to Eisai. A similar pattern occurred with the Lilly drug and in some other studies, and sometimes involved other people of color, including Hispanics.

Experts are baffled by the findings. Why would amyloid levels — thought to be a key driver of Alzheimer’s — be different in people with similar cognitive problems?

“Is it the color of someone’s skin? Almost certainly not,” said Joshua D. Grill, an Alzheimer’s researcher at the University of California at Irvine. “Is it a difference in genetics? Or other health conditions, like cholesterol, blood pressure or vascular health? Or is it something else, that we haven’t measured?”

While the biology of Alzheimer’s is almost surely the same regardless of race, some researchers say the patients themselves might be different because of underlying health conditions. Some older Black patients diagnosed with Alzheimer’s, they say, might actually have vascular dementia stemming from heart disease, hypertension and diabetes — all conditions more prevalent among African American patients.

The risk of vascular damage also could be increased by a lack of access to health care and years of exposure to racism, as well as genetics, some experts say. And many patients could have a constellation of pathologies driven by other factors, they add.

Whatever the cause, experts say, the bottom line is the same: Patients who do not have excessive amounts of the sticky brain protein should not be treated with the amyloid-targeting drugs because the therapies are unlikely to work and pose substantial risks, including potentially deadly bleeding in the brain.

But that raises the specter of another disparity. If it turns out that a lower proportion of Black dementia patients and other people of color have excess amyloid, they could be left behind as the drug industry races to develop amyloid-reducing treatments. To counter that, experts are urging companies to accelerate work addressingother potential drivers of cognitive decline and to develop combination drugs with multiple targets.

“If we are just targeting amyloid, we can just miss a large potential population that might benefit from treatment,” said Lisa L. Barnes, a neuropsychologist at Rush University in Chicago.

‘A brain is a brain’

For now, the question remains: What should Black patients and their doctors think about the anti-amyloid drugs?

The answer, experts say, depends largely on the level of amyloid in their brains.

More than a year ago, Williford was diagnosed with early Alzheimer’s by David C. Weisman, a neurologist at Abington Neurological Associates, a large practice north of Philadelphia that treats patients and conducts clinical trials for drug companies. The clinic was one of the test sites for Leqembi.

After Leqembi receivedfull FDA approval last summer, Williford underwent tests to determine whether he was a good candidate for the drug. One test — a lumbar puncture, sometimes called a spinal tap — showed elevated amyloid in his brain. That means Williford and similar patients are likely to benefit from an anti-amyloid medication regardless of their race or ethnicity, Weisman and several other experts said.

“A brain is a brain is a brain, whether it is Asian, Hispanic, African American or White,” Weisman said. “A patient is either a good fit or a bad fit, and Robert is a good fit.”

Williford, who spent years working with troubled families in Philadelphia, began having memory problems a few years ago, said his wife, Cynthia Byron-Williford, 59.

“You could tell him almost anything, and he would almost immediately forget,” she said. “If I asked him to make a peanut butter sandwich for our grandson, he would come back three times and say, ‘What am I supposed to do?’”

With few treatment options, many physicians say they will offer anti-amyloid therapy to any patient who has elevated levels of the substance and passes safety tests.

Barry W. Rovner, a neurology professor at Thomas Jefferson University in Philadelphia, said he would not hesitate to offer Leqembi to African American patients who tested positive for amyloid. But, he added, because of the low numbers of Black individuals in the Leqembi trial, “I would say, ‘Look, this has not been tried in many Black people, so we don’t know precisely how it is going to work. But you don’t know precisely how it will work in any person.’”

From a research perspective, “You could say, as a group we don’t know if Black individuals respond the same way to anti-amyloid drugs because we don’t have the data,” Washington University’s Schindler said. “But on an individual level, it is different. If I had a Black patient who was amyloid-positive, I would start him on these drugs.”

But some Black patients might not be comfortable with the medication.

Zaldy S. Tan, director of the memory disorders center at Cedars-Sinai Medical Center in Los Angeles, said when African American patients are informed about the risks and benefits of Leqembi, and about the sparse data available for Black individuals, some will “take a pause and question whether they are willing to accept the uncertainty” and challenges of receiving the every-other-week infusion and multiple follow-up tests.

A promise of diversity

The best way to know for sure how drugs for Alzheimer’s — and other diseases — affect different populations is to have more diversity in trials, experts agree. But research participation by Black Americans and other people of color has been held down for years for several reasons.

The 20th century’s infamous Tuskegee syphilis study created long-standing mistrust about trials within the African American community. Men were left untreated to suffer and die even after an effective treatment emerged for the bacterium.

Alzheimer’s research, meanwhile, has long been centered in memory clinics at elite academic institutions, which tend to attract well-heeled patients with health insurance and other resources. The clinics have served as effective recruiting grounds for trials that end up with a predominantly White enrollment.

“We have done a poor job of making African American Alzheimer’s research inclusive,” said John Morris, a neurologist at Washington University in St. Louis. More than two decades ago, he created an African American advisory board at the school’s Knight Alzheimer Disease Research Center after realizing only 3 percent of trial participants were Black.

Others also are redoubling efforts to increase diversity. John Dwyer, president of the Global Alzheimer’s Platform Foundation, a nonprofit that runs trials, said the organization has sharply increased participation by people of color by sending dedicated teams of African American and Latino professionals into communities to build relationships with physicians and personnel at health centers, senior centers and places of worship. They stress to the communities how much they can benefit from the studies, he said.

Stephanie Monroe, vice president and senior adviser of health equity and access at the advocacy group UsAgainstAlzheimer’s, noted that low Black enrollment is not limited to Alzheimer’s trials. If all the drugs that have not been tested on people of color were eliminated, the shelves of pharmacies would be nearly empty, she said.

“That doesn’t work when you are almost a 50-50 minority/majority population,” Monroe said.

The FDA has issued guidelines for industry designed to bolster diversity in studies, while the National Institute on Aging recently pledged toprioritize funding requests that are “appropriately inclusive.”

The low Black enrollment in studies is just the latest controversy involving the anti-amyloid drugs. For years, earlier versions of the drugs failed repeatedly in trials. By contrast, Leqembi, in an 18-month trial, showed unambiguous, if modest, benefits, slowing disease progression by about 27 percent, or roughlyfive months. The drug, administered every other week, carries a list price of $26,500 a year.

In July, Lilly reported that its anti-amyloid drug, donanemab, was even more effective at removing amyloid. But like Leqembi, it can cause serious side effects, including brain hemorrhages. Some doctors think the drugs will provide bigger benefits when taken for a longer period or earlier in the disease, but others say the medications, which require repeated MRIs to check for side effects, leave much to be desired.

Both Eisai and Lilly said they are working hard to increase diversity in clinical trials. In the meantime, they said, patients with elevated amyloid should benefit from the anti-amyloid drugs, regardless of race or ethnicity.

“We have no pathophysiological reason to expect different efficacy between races and ethnicities for Alzheimer’s treatments that remove amyloid,”Lillysaid in a statement.

Eisai acknowledged that the Leqembi trial was not designed to test the drug in individual racial and ethnic subgroups. But it said in a statement that the totality of the evidence indicated that “all patients, regardless of ethnicity, benefited from treatment” with the drug.

“We and the U.S. FDA — as evidenced by the agency’s approval of Leqembi — believe that the benefits and risks in these patient populations and races has been established,” the company added. Eisai said volunteers who did not pass the amyloid threshold did not have Alzheimer’s and should be assessed for other conditions.

In an interview, Teresa Buracchio, acting director of the FDA’s Office of Neuroscience, said the agency “did not see a notable difference by race” in safety and effectiveness in the limited data available on subgroups in the Leqembi trial.

But other experts were skeptical, saying the number of Black patients in the Leqembi trial was too low to know whether the medication is safe and effective for African Americans. “Without having a representative population, it is impossible to assess,” said Barnes, of Rush University.Some researchers suggested that patients in underrepresented populations should wait for future advances in treatment.

‘We just want to get going’

On a recent day, nurse Christine Besso bustled in and out of Williford’s infusion room at the neurology clinic, taking his vital signs and inserting an IV line. “Let’s get this party started,” she said.

Byron-Williford, watching the process from a nearby couch, said she was not concerned about the low numbers of African Americans in the Leqembi trial.

“I think it will work or not work based on the individual,” she said, adding with a laugh, “and if it doesn’t work for him, it is because he is ornery.”

Byron-Williford said her husband’s health problems accelerated a few years ago after his son, who was in his early 20s, died unexpectedly. Williford became depressed and lost his appetite. Last summer, when he went to pick up his wife at a nearby hair salon, he drove around, lost. She later confiscated his car keys.

In the clinic, shortly after Williford’s infusion began, Weisman stopped in to check on him and discuss possible side effects. When Williford asked him how long he would be on the drug, Weisman shrugged, saying it depended on how he did on the drug and on test results.

“We are getting on an airplane, and we don’t even have a destination airport yet,” Weisman said. “We just want to get going.”

[inkskinned]

you have to go to work so you can pay for your doctor, who is not taking your insurance right now, and if you say i can't afford the doctor's you are told - get a better job. it is very sad that you are unwell, yes, but maybe you should have thought about that before not having a better job.

(where is the better job? who is giving out these better jobs? you are sick, you are hurting - how the hell are you supposed to be well enough for this better job?)

but you go to the doctor because you had the nerve to be hurt or sick or whatever else. and they tell you that it is because you have anxiety. you try your best. you are a self-advocate. you've done the reading (which sometimes pisses them off worse, honestly). you say it is actually adding to my anxiety, it is effecting my quality of life. so they say that you are fat. they say that all young people have this happen to them, isn't it a medical marvel! they say that you should eat more vegetables. they say that you probably just need to lose a little more weight, and that you are faking it for attention.

(what attention could this doctor possibly give? what validation? that's their fucking job, isn't it?)

there is always a hypochondriac, right. someone always tells you about a hypochondriac. or someone who is unnecessarily aggressive during the worst days of their life. or someone looking "for a quick fix". or some idiot who wasn't educated about how to properly care for themselves who just abandons their treatment. and again, the hypochondriac, the overly-cautious hysteric. these people don't deserve to be treated like humans (right), and since you might be one of these people, you also don't get treated like a human. because those people can really fuck with the system, you now have to pay for it. and besides. you're actually probably faking it.

(more often than not, you find a 2:1 ratio of these stories. for every "hypochondriac", there are 2 people who knew something was wrong, and yet nobody could fucking find it. the story often ends with pointless suffering. the story often ends with and now it's too late, and it's going to kill me.)

you are actually just making excuses. someone else got that procedure or that diagnosis and he's fine, you should be fine too. someone else said they watched a documentary about other inspirational people with your exact same condition, maybe you should be inspirational, too. you're just too morbid. your pain and your experience is probably just not statistically concerning. it is all self-reported anyway, and you're just being a baby.

(once, while sitting down in the middle of making coffee, you had the sudden, horrible thought - i could kill myself to make the pain stop. you had to call your best friend after that. had to pet your dog. had to cry about it in the shower. you won't, but that moment - god, fuck. the pain just goes on and on.)

you know someone who went in for routine surgery and said i still feel everything. they told her to just relax. it took her kicking and screaming before they figured out she wasn't lying - the anesthetic drip hadn't been working. you know someone who went in for severe migraines who was told drink water and lose weight. you know someone who was actively bleeding out and throwing up in the ER and was told you're just having a bad period.

in the ER there are always these little posters saying things like "don't wait! get checked today!" and you think about how often you do wait. how often the days spool out. you once waited a full week before seeing the doctor for what you thought was a sprained wrist. it had actually been broken - they had to rebreak it to set it.

but you go into the doctor. the problem you're having is immediate. the person behind the counter frowns and says we're not taking your insurance. you will be paying for this out-of-pocket.

they send you home with tylenol and a little health packet about weight loss or anxiety or attention deficit. on the front it has your birthday and diagnosis. you think about crying, and the words swim. it might as well say go fuck yourself. it might as well say you're a fucking idiot. it might as well say light your money on fire and lie down in it. and the entire fucking time - the problem persists.

it's okay. it's okay, it's just another thing, you think. it's just another thing i have to learn to live with.

[ohello0]

If I have to hear the name ozempic one more fucking time…..

I have a friend who’s diabetic and she told me that her doctor keeps trying to get her to go on ozempic…but her a1c levels are fine. My friend said she’d rather just get straight insulin shots if it’s that bad but her doc said she didn’t need it…

Then the mf started yapping about bmi and it clicked. My friends levels are fine. Her diabetes is under control. Her doctor just thinks she’s too fat so wants to put her on a medication to help lose weight even though it has atrocious gastrointestinal side effects

Diabetics that genuinely do need ozempic can’t fucking get it bc there’s a national shortage due to random mfs that were already 110 soaking wet with rain boots on snatching up the supply. Fatphobia in medicine isn’t just dangerous it kills, either through encouraging and allowing harmful behavior or neglecting the vulnerable.

[knightdykes]

meet and greet with the doctor today.... my stomach is flip flopping with anxiety

[yurischolar]

<- getting diagnosed with syndromes at my desk. you wish u were me

[ryey22]

The design is still available now in our Redbubble store

RYEY22.redbubble.com

[existential-dad]

x

[skulls-and-broken-hearts]

“ There exists legends of a legendary artifact that can grant a women’s wish. . . ”

“ . . . The Skullheart. ”

A multimuse roleplay blog for the playable characters of Skullgirls. Tread carefully,

at your own risk. For Aeon is always

watching.

18+ Only Reminder.

[branches-in-a-flood]

Sometimes I get in my own head and discouraged by my dogs and how much I haven't accomplished with them, or that they aren't absolutely perfect in public.

But I just did their annual vaccines and heartworm tests completely by myself and they didn't even move. Both of them let me draw blood without a flinch.

And then I remember that they're actually pretty fucking good dogs.

[outlying-hyppocrate]

i like the person i am in the summer but not the actual season itself

[soup-mother]

surely it's not just me who finds those fucking "be nice, I'm in charge of the pills" pins you sometimes see doctors and nurses wearing in pretty bad taste right? like the *point* is a stand against being mistreated by patients but like...yea you are in charge of the pills and can arbitrarily deny care to people, not really sure why that's something to gloat about? like the number of stories especially of black women being totally denied painkillers in hospital and stuff because the nurses were assholes it's like....maybe you can have your snarky pins when you're not in the position to medically torture someone? idk

like you get people rushing to defend it like "you don't know what it's like working in a hospital" but like...i do sure as hell know what it's like being mistreated by medical professionals. I'm not even getting paid to be here. it's kinda fucking evil when you think about it for more than a second.

[dancingwithdoom]

I have to send out into the universe. I heard once something is sent it can never be deleted. That is my hope

[homoqueerjewhobbit]

If you're looking for a hellish alternative to paperwork, may I suggest mandatory online training modules?

Sexual harassment is the one we mostly see in TV because it has the most obvious opportunities for humor, but I also have to do insider training, data security and making strong passwords, combatting waste and fraud, HIPAA* compliance bc my job is Healthcare related, and more every single year. Not to mention trainings on how to use new software etc like how my company switches time card programs every time our introductory rate ends and there's a half hour video on where to go to click "clock on" and how to submit expenses and shit. At my job, we sometimes have to watch the same videos but for new clients, too. It's also just paperwork, they need to submit a form saying that everyone with access to their data knows not to post it on tiktok.

Even a mob boss has to watch a video to learn the new payroll software at his front businesses.

*HIPAA is US patient privacy laws. If you're a minor thinking about gender affirming care, birth control, stis, abortion - any medical care you don't want your parents to know about - you should make sure you know your rights in whatever country/state etc before accessing care. /siderant over

We don’t talk enough about how fanfiction writers love to give character large amounts of non-specific paperwork they hate doing

[bijoumikhawal]

Fundraisers for Sudan

Funding for food at the Kassab IDP camp

The Save El Geneina initiative, which provides food and education/childcare to refugees in Chad

Evacuation fund organized by a friend of mine for 15 families trying to get out of Darfur

Food aid for Sudanese refugees in Cairo, who urgently need it as they face discrimination in Egypt

The Khartoum Aid Kitchen, a program supporting 10 kitchens that feeds thousands of people in the greater Khartoum area

The relocation and potential evacuation of an extended family consisting of at least 33 people

The Sudanese American Physician Association, which has been supporting hospitals and medical professionals in Sudan

The Darfur Women's Action Group (Darfur being a region with a higher Black Non-Arab population)

Two initiatives aimed at distributing menstrual hygiene products to people in Sudan

Hometax, a trusted on the ground org

Aid for the Gorom Refugee Camp in South Sudan, handled by a refugee led program

A continually updated thread on Twitter of even more gofundmes

[arsenenicholas]

https://goodlawproject.org/crowdfunder/nhs-cyp-guidance/?fbclid=PAZXh0bgNhZW0CMTEAAaadkVMoRUHpcFptnjlifnc1xJ0i7YGVi78tfv2vEXVaVIQDPTEp1-ozNcY_aem_AfqNP9xEERFn6GRCZCIP7B2RriLi8ZN7pVAFzmNwdvqIXW0nmc1mTe5Hq0UV3xC6VPWdYe1x64wHk7O6-HPOhIdf

Please share, tag someone who could bring this to a lot of people, and post to other platforms. Not originally mine, idk who is the source of the screenshots.

Image ID under cut

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In thick white text on black background-> NHS ENGLAND ARE PLANNING A HONEYPOT WHERE THEY SEND ALL KIDS ON GIDS WAITLIST TO CAHMS TO HAVE THEM BE ASKED IF THEY ARE TAKING BLOCKERS/HRT VIA PRIVATE OR DIY ROUTES

Text is broken and in the middle is an excerpt from a leaked nhs document-> a) For medication sourced directly (e.g via the internet), explain the increased risks of harm due to the unregulated nature of these medicines/products. These may include the use of counterfeit chemicals, unsafe/unknown ancilliary ingredients or variability of potency etc. More information can be found here (link to nhs website). // b) Do not initiate or continue prescribing puberty surpressing hormones or gender affirming hormones. The General Medical Council's guidance to medical professionals on 'bridging prescriptions (a course of endocrine intervention managed by a healthcare professional outside of the specialised gender service while an individual is waiting to be seen) does not apply to care offered to young people under 18 years of age. // c) If the child/young person or their carer disregards your advice and you consider that this puts the child/young person at increased risk, then a safeguarding referral might also be appropriate in line with standard safeguarding approaches. Discuss with your line manager and your organization's safeguarding team.

Thick white text on black background continues-> ANY WHO SAYS YES AND DO NOT DESIST FROM DOING SO WILL BE THREATENED WITH SAFEGUARDING REFERRAL (TAKEN INTO STATE CARE)

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In black text on white background, from the news article linked above-> It seems to us - and to those inside the NHS who have leaked the document to us - that what purports to be an "assessment" in fact an exercise in bringing very significant pressure to bear on trans youth and their families to cease private treatment, backed up with a threat of a safeguarding referral to social services if they do not. // We are concerned about what appears to be a misleading exercise in gathering data on which trans youth are obtaining private treatment from abroad, for the purposes of seeking to cause or compel them to stop treatment.

In the same thick white text on black background as previous image-> So an internal NHS document has been leaked basically asking trans kids on excruciatingly ling waiting lists to come to a 'mental health assessment' where the NHS will harvest their personal information & threaten their families with a social services referral if they're found to be on private blockers/hormones & refuse to come off them. // This country is for dogs i swear.

[dkniade]

I remember, years ago when I first started learning Japanese, I had no idea how Japanese first person pronouns worked or which one to choose, so for a short while I used “Dusk” while introducing myself (instead of, say, formal gender netrual 私 / watashi that, perhaps unknown to me, can be taken as feminine in an informal setting like on social media). Maybe I thought “When in doubt, use your own alias of course.”

…..meaning for a short while I spoke Japanese kinda like English dub Paimon. 恥ずかしい…