Tag Archives: Alzheimer’s disease

Alzheimers, Imperfect Drugs, and Medical Equity

Debbie says:

In June of 2021, the US Food and Drug Administration (FDA) approved the first drug treatment for Alzheimer’s Disease, a leading cause of dementia in (mostly) older adults. The approval was highly controversial, and resulted in the resignation of three members of the FDA board that voted against approval.  More recently, the Centers for Medicare and Medicaid Services (CMS) chose to make the drug available only for patients in clinical trials, although the FDA approval is not limited. Rachel Sachs, writing at Health Affairs this past January, has a cogent summary of the approval issues and what’s behind them. Basically, the drug has been demonstrated convincingly to reduce plaques in the brains of people with Alzheimer’s but that does not correlate to statistically reliable evidence of actual health improvement.

I had been following this very casually, until I happened to see Isadore Hall’s op-ed piece in my local Black press. Hall feels strongly about the CMS decision:

I know that CMS is fully aware that Alzheimer’s disease is a devastating disease that affects more than 6 million Americans, 80% of whom are Medicare beneficiaries. Among Americans 65 and older, Blacks have the highest percentage of Alzheimer’s disease, 13.8%, according to the Centers of Disease Control and Prevention (CDC). In fact, the Alzheimer’s Association reports that older Blacks are twice as likely to have Alzheimer’s disease than whites.

African Americans are also mostly likely to be undiagnosed for Alzheimer’s Disease, according to the National Institutes of Health. Therefore, we are also most likely to be untreated.

He goes on to explain how personal the issue is for him, as it is for so many millions of people in the United States.

Intellectually, I can understand the CMS decision; in fact, from what little I have in the way of details, it sounds like a scientifically sensible and justifiable decision.

But …

Not everything about this issue is about the science. Having Alzheimer’s in your family is devastating (often more to the family members than the person affected, particularly as the disease progresses). Aduhelm represents hope, even if that hope is tenuous. And the last thing we need as a country right now is a message that says “this particular hope, like so many others, is only available to rich people.” Add in the fact that Black people suffer more from Alzheimers and are vastly less statistically likely to be rich enough to afford it on their own. What’s more, clinical trials (where the drug will be available) are predominantly available to White patients (some estimates put it at 85% of clinical trial patients are White). The FDA is putting together guidance on how to make the trials more equitable–as of this month, that guidance is in draft and not being implemented.

CMS is legally not allowed to consider cost in their decision-making. And it’s no accident that the big insurers have been publicly thrilled with the decision, which gives them cover to refuse to make it available to their customers (of all races).

So, while Aduhelm’s effectiveness and appropriateness is important, so is the availability of hope to all, not to mention even-handed access to resources.

I’m 100% in favor of a better FDA, with a less politicized decision-making process. I would like to see the FDA revisit this approval. Meanwhile, taking this position against the CMS ruling aligns me with some uncomfortable allies, including the Wall Street Journal and many Republican politicians. But in the end I was moved by Isidore Hall. (“My grandmother lost her fight to Alzheimer’s Disease in 2017. I often watched her feeling helpless as she suffered from this horrifying and painful disease.”) I believe this medication should either  be available to everyone or to no one.


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Pat Summitt (1952-2016): Sports Legend, Feminist Hero


Debbie says:


I’m ashamed that I didn’t know more about Pat Summitt before she died earlier this week.  Her name was only vaguely familiar to me; I’ve been reading up since, and I’m in awe.

Body image activists and thinkers are often uncomfortable with athleticism and competition because so many people can be marginalized by successes available to only a few. At the same time, appreciating the body has to include appreciating its highest achievements, without valorizing those achievements at the expense of everyone else. Pat Summitt represents a lifelong commitment to working first with her own body and then with the minds and bodies of competitive college-level women’s basketball players, and getting absolutely the best out of herself and everyone she worked with.

For any of you who are as out of this loop as I was, Summitt coached the University of Tennessee Lady Vols to nearly 1100 wins, making her the coach in all of basketball history with the most victories. In 36 years, she took her team to eight NCAA championships (a record at that time). The only thing better than her record of wins is her record of educational achievement: 100% of the students who completed their athletic eligibility during her tenure also graduated from college.

She died at age 64 of complications from early Alzheimer’s disease.

As Liz Magee said in her obituary at The Frisky, Summitt was “a truly great feminist in a beautifully non-performative way. She just did the damn thing.” In that context, Magee cites Summitt’s response when she was invited to coach the University of Tennessee men’s team: “Why would that be a step up?

When she was diagnosed with Alzheimer’s disease, she refused to step down, although she acknowledged that her mind was not working like it had been. With the help of associate coaches, she coached one more year before retiring in 2012.

She had a consuming passion, and she lived it to the utmost. One of her star players, Candace Parker, has become a WNBA star. After last night’s game, she spoke for a few moments about her beloved “Coach.”

Here’s a beautifully embodied quotation from Summitt on her own basketball career before she was a coach:

It’s difficult to explain to someone who has never competed, but a moment arrives in the life of a serious athlete when the game begins to live in you: It so occupies your mind and body that you almost become it. You gain a sense of such command over your own arms and legs that it can almost feel like flying, and you begin to crave that sensation daily. Everything else is just an interruption until you can return to it. That was me. I played, quite literally, in my sleep.