Monthly Archives: April 2022

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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She Transformed the Art World–and No One Knows About Her

Laurie and Debbie say:

Jackson Pollock, Marc Chagall. Names that resonate through the history of modern art: trailblazers, game-changers. Kelly Grovier, writing for the BBC, reveals the little-known story of the woman who not only preceded them, she also inspired at least Pollock. We have evidence.

Janet Sobel was born in Ukraine. She and her mother and siblings came to the United States in 1908, after her father had been killed in an anti-Semitic pogrom. She was 15. By 1938, she was a grandmother, starting to experiment with painting.

She was a natural. Without any instilled deference to rules that mustn’t be broken – and with the fearlessness of someone who had survived the traumas of religious persecution and the hardships of the Great Depression – Sobel unselfconsciously set about inventing art as if entirely from scratch. …

With no inculcated allegiance to any artistic school or prejudice regarding the appropriateness of materials, Sobel began playing both with what a painting can say and how it can say it. Using unconventional implements such as glass eye-droppers to squirt paint and the strong suck of a vacuum to drag wet splatters into thin gossamers that no traditional brush could spin, she assaulted the surface of canvases laid out on the floor, orchestrating a liquid lyricism of spills, splashes and spits the likes of which had never before been seen.

She could have done this in her living room, with herself and her family and friends as audience, but her son Sol (whose temporary interest in painting may have been what got her started) made it his business to get her work into the world,

 reaching out to everyone from Chagall himself to the influential art collector Sidney Janis, who would prove instrumental in establishing the reputations of everyone from Willem de Kooning to Mark Rothko to Pollock.

By 1944, Sobel was well on her way to being a formidable fixture in the New York art scene, debuting that year with a solo show at the Puma Gallery on 57th Street – an exhibition that yielded widespread praise for her works’ “astounding sophistication” and “absolutely unrestricted” imagination.

The legendary Peggy Guggenheim featured her work in a group show and a solo exhibition at Guggenheim’s gallery. And that’s why we know where Jackson Pollock got his ideas:

… the art critic Clement Greenberg admitted to visiting the exhibition with Pollock and that the two “noticed one or two curious paintings shown at Peggy Guggenheim’s by a ‘primitive’ painter, Janet Sobel (who was, and still is, a housewife living in Brooklyn)”. Putting to one side Greenberg’s derisory instinct to belittle the status and achievement of Sobel (“curious”, “primitive”, “housewife”), what he goes on to acknowledge places beyond doubt the enduring significance of the encounter: ‘Pollock (and I myself) admired these pictures rather furtively… The effect – and it was the first really ‘all-over’ one that I had ever seen… – was strangely pleasing. Later on, Pollock admitted that these pictures had made an impression on him.”

In 1945, Sobel was using the “drip technique” that Pollock has gotten credit for for almost 80 years — and he started using it in 1947.

So if Sobel was prominent, and getting excellent reviews (if sometimes condescending ones) before anyone else used these techniques, why don’t we know about her. That, sadly, is another very common women’s story:

In 1946, the same year that she opened a solo show at Guggenheim’s Art of the Century gallery, her husband Max, moved the family from Brooklyn to Plainfield, New Jersey, in order to be nearer to his costume jewellery enterprise. Unable to drive, Sobel quickly found herself cut off from the ebb and flow of the art scene in which she had only just become an important player.

Compounding that geographic disadvantage was the decision taken the following year by her biggest advocate, Peggy Guggenheim, to relocate to Europe, closing behind her the doors of the Art of the Century gallery – Sobel’s principal platform. Adding insult to injury, the onset of an allergy to an ingredient in paint forced Sobel to turn instead to media such as crayons that were less conducive to the drip technique, all but forcing her to abandon the innovation entirely. By 1948, Janet Sobel, who would die in obscurity 20 years later, had effectively vanished from the art world.

Now she’s a footnote or — in the case of Grovier’s article — an International Women’s Day special feature. The late Joanna Russ wrote the landmark How to Suppress Women’s Writing. Sobel’s story is a textbook example of how to suppress women’s visual art even — or especially — if it is genuinely transformative and changed the landscape of the art world forever.


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