Inequalities persist in who receives care for Alzheimer’s disease

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Arun Rath: This is GBH is All Things Considered. I’m Arun Rath.

Earlier this month, a major medical breakthrough was announced when the drug Leqembi became the first to gain FDA approval for slowing the progression of the early stages of Alzheimer’s. While the drug, which was developed in part by Cambridge-based pharmaceutical company Biogen, is only a first step to further treatments for Alzheimer’s, it’s a big deal, as roughly 500,000 people are diagnosed with the disease every year. Despite this advance, vast inequalities still exist when it comes to who gets treatment for Alzheimer’s, with Blacks and Hispanics having a higher tendency to receive delayed or inadequate care.

To help us understand more about the Leqembi and the social issues around Alzheimer’s care, I’m joined by Dr. Alvaro Pascual-Leone, a professor of neurology at Harvard University and a senior scientist at the Hinda and Arthur Marcus Institute for Aging Research. Doctor, thanks for joining us.

Dr. Alvaro Pascual-Leone: Thank you for having me.

Rath: So we’ve talked a bit about this before on the show, but first, remind us how Leqembi is really just the beginning when it comes to the treatment of Alzheimer’s.

Pascual-Leone: Yeah, it’s a very exciting development because for the first time, we have a medication that is truly a disease-modifying drug. What that means is that it’s a medication that can change the progression of the disease. Alzheimer’s disease is a disease that tends to get worse, affecting patients to the point of them losing themselves, developing a severe dementia. What Leqembi does is slow down that progression by about 30%. That disease modification is exciting because it gives us a new weapon to fight the disease and to sustain people’s well-being.

Rath: Anybody who’s had an experience of this disease knows that even delaying it just the smallest amount is a victory.

Pascual-Leone: That’s exactly right. So it’s one of those situations where we can debate whether 30% slowing down of the disease is a lot or is a little, but the reality is that at an individual level for individual patients, having an additional three months, an additional six months, an additional any amount of time of being themselves to pursue the things that matter to them, to be at their grandchildren’s graduation or at their granddaughter’s wedding, can make a very big difference.

Rath: Now, advocates have pointed out that Black and Hispanic patients may not be able to to benefit from this breakthrough because of this tendency for those patients to be diagnosed in the later stages of the disease. Could you tell us a bit more for us about the racial disparities in Alzheimer’s treatment?

Pascual-Leone: Yes. So this is a very important topic, and I think it’s worth highlighting in that context that it’s not only Blacks and Hispanics and racial differences and ethnic differences that are worth considering, but also gender differences, because the data that we have today suggests that Leqembi is more effective for men than for women. So there is more learning that we need to do there. The reality is that in regards to racial and ethnic differences, oftentimes Black and Hispanic patients seek out help in assessments by cognitive neurologists later than White counterparts. The results of that is the diagnosis is oftentimes made later. That number of people with undiagnosed Alzheimer’s disease, we estimate to be much, much higher among Hispanics and among Blacks and minorities in general than it is among Caucasian populations. So there is a lot to be changed if we want to truly make sure that we reach all those who can truly benefit from this medication. I think one of the issues that affect particularly Black and Hispanic individuals is that – I’m Hispanic, and so I draw from my own cultural background – I think we tend to feel particularly shy about coming out with concerns of cognition. Therefore, it is one of those situations where oftentimes people voice their concerns too late. The consequence of that is that patients come to the attention of their clinicians with additional delay. Even over that delay the was already there for anyone, and we need to overcome that culture of hesitation, to voice concerns, and we need help in order to do that, need education, and need easier access to the assessments in a culturally appropriate manner.

Rath: Those are seem like some fairly substantial hurdles. How do we take that on? For instance, getting people diagnosed earlier.

Pascual-Leone: So I think they are very important hurdles and the way I’ve been thinking about this and emphasizing is that we may want to consider Leqembi as a real catalyst for overdue change in what should be the appropriate way to deal with dementia. So independent of how much benefit one may derive from the medication, the fact we now have a disease modifying drug hopefully leads to an approach to dementia care that is more equitable, that is not reactive, but rather that uses screening at the appropriate point of care by primary care physicians in order to identify individuals who are developing problems and make the right interventions available to them. In order to do that, we need a greater reach. We need primary care physicians to be empowered with the right tools and sensitive measures to be able to assess people and empower them in turn to make their decisions about what kind of life they want to pursue, what kind of interventions they want to consider.

Rath: It’s fascinating. If I’m understanding this right, you would basically address these inequities we’re talking about in how Leqembi or other drugs are rolled out.

Pascual-Leone: Yeah, I think that’s exactly what I think we need to do. I think what we need to do is change the way we approach dementia care. Rather than putting it on the patient or their families to ask for help when they think it’s there. We know that when we do that, when we wait and react, the average delay in making a diagnosis of Alzheimer’s disease is over ten years. Generally, the disease has been going on for nearly two decades before we make the diagnosis, and that’s in a good situation. For underprivileged populations it is much worse, potentially. Sometimes it’s never made. 98% of patients with mild cognitive impairment, which we think of as the stage before developing dementia, 98% of those patients are thought to be undiagnosed. Yet, it is at that stage that medications and interventions like Leqembi would be particularly effective. So we need a yearly checkup of our brain that considers these kind of issues in the appropriately aged population. We need to empower patients to be able to make decisions based on those results. We need to take seriously the possibility of prevention rather than delayed treatment and trying to cope with the disabilities.

Rath: This is very complicated issues of science and medicine and social issues. It’s really great to have you to to explain this for us, thank you.

Pascual-Leone: Thank you.

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