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#mental health care
gwen-thinks · 2 months
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something that people don’t tell you about depression, anxiety, trauma etc is that recovery is not this beautiful healing journey where you figure out the secret to happiness and a clear head and you just come out a different person. it’s hard. it’s really fucking hard and you have to work, probably harder than you even were working before while your mental illnesses stayed dormant.
and that’s what makes me so angry about people who misunderstand disorders and their subsequent treatment. getting help is not easy. you may think that all someone needs to do is wave a magic wand and stop being the way that they are but “getting help” often means signing yourself up for regular therapy, trying out medications, trying out different forms of therapy, processing complex trauma and emotions, reconfiguring your life, challenging yourself every single day to do things you couldn’t before. it’s fucking hard!!
and to everyone out there, like me, who is going through this process - i see you and hear you and i know that we’re going to get through it. and i hate the “you’re so strong” thing but holy shit, we are strong. i know how much effort and work it takes. it’s more than just “drink water” and “go on a walk.” it’s often about rewiring your entire brain.
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Signs to tell if the person in your inbox, asking you to reblog a post with a link asking people to donate money for their sick pet or kid, is a scam
Before we start, a disclaimer that this is NOT a solid confirmation that this person must be a scammer. The intention of this is for you to be wary and always check before donating or rebloging this type of post.
Without further ado and from firsthand experience, here are the red flags:
The person in your inbox asking you to reblog a post with their donation link will always ask you NOT to publish the ask they sent you (but to only reblog their post), and their reasoning would always be something along the line of “I don’t want people to think I pressured you into doing it🥺”
But if you go to the person’s profile with their post asking for donation, 100% of the time, you’ll find that the account has only just been created days ago. — How can you tell this? Easy. You can literally scroll down to the first ever post of their blog in less than 10 seconds.
The thing these scammers have in common is that they will create a new blog and they WILL reblog some general posts, such as fandom posts, to make their blogs look legit. They will have legit profile pictures so they don’t look like bots. But it will always be a newly created blog with several reblogs (mostly about fandoms, because they know rebloging fandom posts will make them look more legit than if they were to reblog some suggestive photos of some women, since the latter will make them look like p0rn bots), and the only original post they made is that post asking for donation.
Move on to the information they provided about their sick pet or kid. They will provide thorough and detailed information to make it look legit. But the thing is that they could just take that from google or steal that information from someone who actually needed the donation. There is never a way to tell if your money will go directly to help save the pet or the kid. My advice is to google the patient’s name and see how old the case is, if the case of this patient with this name and this information has been used to ask for donation by other people before, etc.
The photo of the patient they gave can also help you determine if it’s legit. Save that photo and then use google image search to see if it’s an original photo or if it’s a stolen one that has been used before.
Bonus: the thing these scammers can’t do is provide updates about how the patient’s doing. So it’s only just one post with the link asking you for your money. If it is legit, you should be able to see consistent updates of how this patient is doing or if there’s any change, etc. (I’m not saying it’s a requirement for those whose loved one is in critical care to post updates on social media all the time, I’m simply pointing out that scammers tend to fail to provide any update because they can’t.)
I’ll always encourage donating and helping spread the posts of those who actually are in need, though it’s just so unfortunate that, while there are people who are genuinely struggling, there are a lot of scammers out there looking for an opportunity to take advantage of people’s kindness and using sick pet or kid as a way to scam people and making it more difficult for people who really need help to be taken seriously.
Last but not least, fuck those scammers. Stay safe y’all.
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defleftist · 8 months
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Therapy, and especially psychiatry, are bourgeoisie institutions. You should quit your job, bestie.
I’m not denying the bourgeois roots of both therapy and psychiatry, however your statement is shortsighted. Myself and many other therapists (I won’t speak for psychiatrists as I am not one) put a lot of effort into decolonizing and deconstructing the more oppressive and harmful roots of our field. I work in a rural community clinic with folks primarily on Medicaid and Medicare who otherwise would not have access to mental healthcare. The waitlist for our clinic is in the hundreds. There’s a huge need for help, and I plan to be a part of giving it. My theoretical orientation includes both feminist and leftist therapy and I work hard to provide the care I would want myself as a queer, leftist woman. If therapy feels too bourgeois for you still, that’s okay. You can either search for a new therapist who fits your needs better or not go at all. I feel secure and fulfilled in the help I provide to others, bestie.
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yourlocaladhder · 1 year
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How to love yourself:
Speak to yourself kindly. Don't say things like "you're such an idiot" "you're so cringe" etc.
Set boundaries and stick to them even when people try to make you feel guilty for it.
Recognise when you're reaching your physical or mental limit. Don't tell yourself to "suck it up".
Indulge in your hobbies and things that make you happy. Don't let anyone make you feel bad for it.
Take care of yourself. If you like makeup, put it on. If you want to grow your hair out, do it. Eat on time, sleep on time(it doesn't have to be societally "regular". Be on the cycle that works for YOU).
Forgive yourself again and again. Be kind to yourself when you make a mistake. Know that you tried your best at a point with the information you had at that point.
Don't engage with toxic people or topics. If it makes you feel bad avoid it. You are not obligated to suffer to come off as a good person. Don't let virtue signallers tell you otherwise.
Self reflect. Understand your emotions and think about why you feel the way you feel and where is it coming from? Observe and analyse.
Allow your emotions to run their course. If you feel like crying, crying it out. If you feel angry, vent in a safe place or write it out. If you feel happy, dance around your room if you feel like.
People always say "love yourself" but no one tells us how to do it that's why we keep failing. Here are some things I learned to do and I already see so much difference. I no longer feel like I am floating or a ghost. I feel tethered to my body. Hope these tips will help you.
It will take practice and it will not be a linear progress but keep at it.
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Published: Mar 30, 2023
For over a decade, the Gender Affirmative Model has been the standard of care for gender dysphoric youth across the West. Yet, despite its widespread and long-standing use, good evidence to support it remains elusive.  Maybe that’s because there isn’t any.
A new paper reports on results from a survey of 1,655 parents of children who developed gender dysphoria during adolescence or soon after. American Academy of Pediatrics guidelines recommend affirming these kids in their new gender, and supporting them along the path to social, medical (hormonal), and surgical transition.
The results of this survey provide strong support for Dr. Littman’s Rapid-Onset Gender Dysphoria (ROGD) hypothesis, which suggests that gender dysphoria in this group may resolve with time and good psychological and social support, if needed.
Key Findings
Key findings of particular concern are that these children tend to have emotional problems that predate their gender-related issues by nearly four years. Furthermore, children with mental health issues were more likely than those without to have taken steps to transition.  Children who were referred to a gender specialist were also more likely to have taken steps to transition. Parents reported feeling pressured by these specialists to transition their child. And parents reported a decline in their child’s mental health and social functioning after transition.
History of Gender Dysphoria and Standards of Care
About 15 years ago, Western countries began experiencing an exponential rise in adolescents and young adults suddenly developing gender dysphoria and being referred to gender clinics for treatment. Around the same time, a new philosophy on transgenderism began to take root:  Just as there is nothing wrong with being attracted to the same sex, there was nothing wrong with identifying with a gender that did not match your biological sex.  In other words, being transgender is perfectly normal. It is not a mental illness.  If a trans person does have any mental health issues, it can be attributed to the extreme distress of having to live in a body that does not feel right (gender dysphoria), and the stress of living in a judgmental, transphobic world.
Out of this philosophy grew the Affirmative Care Model. This model focused on reassuring (affirming) people that their gender identity was real, normal and natural, and helping them take steps to relieve their gender dysphoria through social, medical (hormonal) and surgical transition. In order to address their social distress from lack of acceptance, much effort is devoted to creating a supportive environment among friends, family, schools and society in general.
Although there was almost no evidence to support it at the time, the Affirmative Care Model quickly became the standard of care in most Western countries.
In 2016, Dr. Littman noticed an anomalous spike in teenage girls suddenly declaring themselves transgender and became concerned.  She conducted a survey of their parents to learn more about this new phenomenon.  Based on what she found, she proposed that a new sub-category of gender dysphoria had emerged, this one sharing more similarities with anorexia and other eating disorders than with the previously recognized types of gender dysphoria.  Dr. Littman described Rapid Onset Gender Dysphoria (ROGD) in her seminal paper published in 2018.
ROGD develops suddenly, during or after puberty in a person who would not have met the criteria for childhood gender dysphoria. Most often, these kids are white, highly intelligent and come from well-educated families. ROGD affects mainly girls, and groups of friends often come out as trans together. The influence of social media is believed to play a role. They often have a prior history of mental health issues, developmental difficulties or have experienced a traumatic or stressful event before developing gender dysphoria. A prior history of self-harm and difficulty fitting in with their peers are also common. Sadly, transitioning is not likely to help these kids with their issues as it does not address the root cause.  In fact, it has a good chance of making things much worse.
The ROGD hypothesis suggests that for these unhappy kids, “gender dysphoria” is a catch-all phrase for any kind of distress, and transition is the cure-all solution
Since the publication of Littman’s paper, the ROGD hypothesis has come under fire from proponents of the affirmative care model.  It’s easy to see why:  The affirmative care model is based on the premise that being transgender is perfectly normal. The ROGD model suggests that this particular kind of gender dysphoria – and the desire to transition – is most definitely not normal. It’s a maladaptive coping mechanism.
Unfortunately, there is little evidence to support either hypothesis.
The World Professional Association for Transgender Health’s newest Standards of Care, published in Oct. 2022 admits, “A key challenge in adolescent transgender care is the quality of evidence evaluating the effectiveness of… gender-affirming medical and surgical treatments.” “The number of studies is still low and there are few outcome studies that follow youth into adulthood.”
Testing the ROGD hypothesis presents its own challenges.  In North America, gender clinics are still using the affirmative model as a standard of care, which views taking steps to transition as medically necessary and thus, would be unwilling to test the ROGD model. Further, ROGD has become such a contentious topic at universities that any academic who broaches the subject risks career suicide. Just ask Dr. Littman and Dr. James Caspian.
Survey Results
Concurring with Dr. Littman’s findings, our survey indicates children who are most likely to develop ROGD are of European descent (78.9%), with above-average intelligence. They are also more likely to be female (75%). Their gender dysphoria develops around the age of 14 for girls, and 16 for boys. This may be partly due to the fact that boys go through puberty later than girls.
Their parents are more likely to be progressive and hold positive views towards LGBTQ+ rights.  Frequently, parents went out of their way to make sure the reader understood this when they told their stories. Many had family and friends in the LGBTQ+ community, and some were members themselves. They just didn’t feel it made sense in their child’s case.
A majority of these kids were dealing with mental health issues (57%) that began around the age of 10, well before they developed gender dysphoria, and 42% of them had received a formal psychological diagnosis.  The most frequently-reported issues were anxiety and depression. Self-harm was also prevalent in girls. Attention deficit disorder, autism, and obsessive-compulsive disorder were reported in numbers higher than the general population.
Very often, these kids had experienced a stressful event before they developed gender dysphoria (72.6%). Some described issues that would be overwhelming even for an adult to deal with, such as the suicide of a close relative, receiving a serious medical diagnosis such as cancer, being sexually assaulted, or being present at a mass shooting. Sometimes, the stress was more mundane, like moving, breaking up with a girl- or boyfriend, or having a good friend turn on them, but the child was having a hard time dealing with it. During the lock downs due to COVID, the strain of isolation was especially hard on these kids.
Parents also reported that their kids were having a lot of trouble fitting in with their peers at an age when being accepted feels like the most important thing in the world. Only about a quarter of parents reported that their child was well liked, and only one third said their kids got along well with other kids.
Parents reported their kids spent an average of 4.5 hours per day on the internet and social media.
When asked whether their child had friends who came out at the same time, 60.9% said their daughters did, compared with only 38.7% of their sons.  The average number of friends who came out were 2.4.
“My daughter used to be so lonely her only friend was her guinea pig. At 11, a girl at school befriended her as did her group of friends. All of a sudden, my daughter said she was bi, then gay, then pan, then poly, then fluid, now trans. Her mental health is deteriorating and the psychiatrists (this is her 6th) seem to push their own agenda and label me transphobic. I KNOW my daughter. When no social group will welcome you and one finally does, you’ll conform to fit in, to not lose the only ‘friends’ you have.”
~Parent of an ROGD Kid
Transition
The majority of the children had socially transitioned at the time parents completed the survey (65.3%), and girls tended to socially transition earlier (age 15) than boys (age 17). In general, parents reported that their children had not started taking puberty blockers or hormones, and surgery was especially rare.
Girls who had friends who socially transitioned were more likely to do so themselves (73.3%), compared with only 39.5% of boys who were more likely to transition if they had a friend who did so.
One very concerning finding was that children with preexisting mental health issues were also more likely to socially transition than those without. This is worrisome, because children with emotional issues may lack the judgment needed to make serious, and sometimes irreversible, decisions about their bodies.
Another troubling finding was that children who received a referral to a gender specialist were more likely to have transitioned. This is especially concerning because 51% of parents who took their kids to a gender specialist also reported that they felt pressured to transition their child.
Effects of Transition on Mental Health and Social Functioning
When asked about the state of their child’s mental health after social transition, they were much more likely to say it had worsened than improved.
Sadly, the change in the quality of the parental relationships also declined, as shown in the table below:
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Conclusion
The results of the largest survey to date on gender dysphoric adolescents support Dr. Littman’s ROGD hypothesis. These youth are most likely using “gender dysphoria” to describe general feelings of dysphoria that they have no other name for, and do not understand.  Transitioning will not help them. It can only cause irreversible harm and make things much worse.
Sweden, Norway, Finland, the UK and some States are backing away from the gender affirmative model, citing the lack of evidence and amid the growing number of detransitioners, many of whom are launching lawsuits against the gender specialists who harmed them. (See Ritchie Herron and Keira Bell, Michelle Zacchigna and Chloe Cole.)
Yet here in North America, the United States and Canadian Governments, the American Academy of Pediatrics and most other medical associations, are doubling down on the gender affirmative model.
If they truly want to “do no harm”, then they must follow Sweden’s lead and stop transitioning minors.
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This should be good news. We have good reason to believe that distress can be resolved by treating the underlying cause, rather than through invasive and irreversible hormones, drugs and surgeries. How can this be a bad thing?
Because it's not about helping distress; if it was, they'd applaud the best treatment that causes the least harm. But it's about using anxious kids as pawns to remake society according to Queer Theory.
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tama1313 · 4 months
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Dear madders
As artists, how can you snap from your daydreams and actually start to produce what you were daydreaming?
Because my biggest problem is my mind is full of creatives ideas but I keep "thinking" them instead of doing something practical
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cosmicdayglow · 4 months
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My experience being on anti anxiety medication that actually works:
- I can…think. It’s so weird and hard to explain. I’m just more aware of my own thoughts and emotions. They don’t race and spiral as much as they used to. It’s like my thoughts used to be whizzing past so quickly I could hardly keep track of them and now they’ve just…slowed down enough that I can actually keep up.
- My anxiety is there. It’s definitely there, and it unfortunately still rules my life, which I’m working on. But it’s not completely overwhelming. Anxiety used to be this huge, crushing force that blanketed me. It was completely debilitating, and now it’s just…there. Still sucks, still impacting me, but I’m no longer crushed beneath the weight of it.
- I literally! Can be in stressful situations! And not! Panic!!!!! My manager freaked out on me the other day and I was just calm!!!!! Calm!!!!!! It was absolutely wild!!!! I couldn’t believe it!!!!!
- Panic attacks still happen. But my coping skills actually WORK now! Before, every single coping skill I tried just didn’t work. It was like trying to put out a house fire with a glass of water. And now it’s like I actually have a working fire hose, and maybe I can’t extinguish the entire blaze, but I actually am able to put out the worst of the damage and then I can move on with my day.
It took three years of trials before I found a medication that worked. Three. Whole. Years. And now I’ve found meds that actually work and life is just. So much better. I’m having a horrible, shitty day today and yet I’m still able to write all this and not feel like I’m lying. The journey has been tough and I’ve had to cry, yell, and even report some doctors before I got to this point. Don’t give up on yourselves. You deserve to feel good. You deserve relief.
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ichiegoichie · 27 days
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🧡Day 2 🩷
1st March 2024
40 minutes soundbath 
10 minutes guided meditation 
1 episode of therapy thoughts podcast 
1 episode of lets talk about mental health podcast 
Read 7 pages of Kaizen
15 minutes yoga
22 minutes exercise 
30 minutes walking
5 positive Affirmations
I am a good leaner
I am hardworking
I am determined
I am optimistic
I am strong spirited
5 things to be grateful for
Good health
Good mind
Good food
Fresh air
Water
🧡🩷🧡🩷🧡🩷🧡🩷🧡🩷🧡🩷🧡🩷🧡🩷🧡
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tdicentra · 6 months
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Sunshine comes to all who feel rain 🖤
- R. M. Drake
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george-weasleys-girl · 4 months
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Update
Except for finishing up Ch. 44 of North Star (which will drop on Christmas day), I'm officially on my writing break. I'll still be around posting moodboards and random stuff for the next couple of weeks.
I probably won't be around much next month, though. But I have the Yuletide fics and other things scheduled for almost every day through Christmas. ❄️🎄🎁 (And one New Years Eve fic!🎉🥂)
Now it's time to relax 😌
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witches-bottle · 1 year
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The Shadow Work
The Shadow is something that is vilified in a lot of circles. It is said to be the source of one's issues because of the unconscious trauma acting out in the conscious way. It becomes a hindrance in the eyes of a few people. Unfortunately, that's like telling yourself that you're the cause of your issues. The Shadow is you, you are the shadow. The shadow is the repressed aspects of yourself, including traits, trauma, emotions and the like. It isn't some separate form of you but is simply you on the backburner.
When working with the shadow, you're working with yourself. You're working to remedy aspects of yourself that are wounded, fractured, repressed or hidden and it does cause fear. I often compare it to stirring water. It brings up dirt and mud and you have to work and wait for the mud to settle. In the same way, stirring the unconscious causes things to occur, the particles of soil, mud and sediment (emotions, trauma, memories) to rise up into the conscious and we have to be patient with them and ourselves in order to work with them. In my personal praxis, a lot of emphasis is placed on the consciousness. I'm personally inspired by Levi's image of Baphomet and believe it to be the Apex of the Sorcerer, Non-Duality, Acceptance of all forms into the self and what I have nicely placed the term "Reconciliation" to. So my praxis led to me having to develop ways to commune with the unconscious, the shadows within and included the ideas of the Id, the Ego and the Superego.
The next issue that comes in when one doesn't do shadow work is that sometimes magic will cause a movement. The flow of energy might induce a purgation. This is why emotional and mental aftercare becomes such an important part. It is not uncommon to look at ritual workers in the past that became bat-shit crazy. I often compare it to pouring water into a vessel that has cracks in it. Despite me being aware that the magus can fall to their own trauma and that we should be willing to aid them in such cases, I still believe that it falls under the magus's own duty to themselves and to their practice to care for their mind and mental health.
Most of my techniques with Shadow work involved communion and reconciliation. I work with the shadow but also the emotions it presents. So I make sigils for the emotions I experience such as "anger", "pain and depression", "anxiety and obsession" and begin to work with them. I go into my little astral temple and I ask these emotions questions on their source, their manifestation and how I may go about rectifying and healing them so that they can manifest in my life in a better, or less harmful, way. When I commune with the shadow, I see it as meeting with myself and loving, tending to and caring for myself. My shadow is the representation of my survival and the way it acts is for that same.
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flowerandblood · 5 months
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As it was a hard week for me and because of the events here and the stress around things in my private life, even though my husband had lied on purpose a maximum of 4 times in his life, we decided after a long conversation and my despair that I couldn't stand it in his mother's house a week under her observation. That I would stay in our house and just rest, and he would say that I was just sick. ✨
I know that lying and running away isn't the way, but this would be the first time I'm not travel there with him, and I feel like I need and deserve a break.
I've been thinking a lot about my mental health lately, and the thought of travel there filled me with fear and stress that I know I would feel the entire time I was there, unable to get any rest or relaxation in the way I would like. I hope we'll sleep at his grandma's later. Anyway, me staying means I'll probably spend my time writing!!!!!!! ✨
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I fucking hate people who think they are fucking superheroes and think that they can help everyone but they don't even try to understand your situation and then in the end you're the one to blame because you refused their pointless help.
SERIOUSLY, can people fucking STOP doing this?! Pretend to be all-know-saviors when in reality they actually do the opposite.
I am speaking for myself here but i know a few other mentally ill people who fucking hate this shit.
If you truly want to help somebody DO NOT jump on recommendations and what not. If you want to TRULY help someone maybe first try to get to know the person and get to know their situation and try to understand it because for many of us explaining over and over and over again and not being understood is hell and we're too fucking tired of it. Also i might add that for autistic people explaining stuff can be super hard (aka me) so that should be taken into consideration.
Lastly, even if you had similar issues and struggles it DOESN'T MEAN that what works for you will work for everyone. Because, hello captain obvious, everyone is different, everyone reacts differently to different situations and each situation no matter how similar it might be is also different. That's why I'd never jump into advising anyone, at least not until i actually understand and know their situation and even then I'm very cautious about it because i know that i can do more damage than help.
Oh and i forgot to mention patience because many of these "superheroes" don't have it because they don't really care and they just want you to accept their advice no matter what.
Sorry not sorry for the rant but i can't deal with this shit anymore.
Sincerely, your local very mentally ill, very mentally fucked up autistic person.
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defleftist · 9 months
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Being a therapist in therapy is so strange because I have the skills and knowledge to help others process trauma, learn to regulate emotions, etc. but I can’t help myself with those skills, I have to outsource that job to someone else who has those same skills.
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ausetkmt · 2 months
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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.”
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A therapist isn't your friend or your mother.
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