Alzheimer’s = An Insidious Disease State (AIDS)

J0227420In the Sunday New York Times Business Section, there was an article about Alzheimer’s research.  As I read it, I was struck by the current state of research and the way it mimicked the AIDS epidemic during the late 1980s. 

As many of you know, I was an "AIDS Activist".  I’ve never been sure what that exactly meant.  We were only people stuck in something that was happening with frightening speed and killing people around us who were motivated to act on it and many took to demanding speed in research and approval.  And we were determined to make that happen.  That resolve resulted in shorter approval times for drugs and pathways for early adoption of new treatments.

The AIDS epidemic took health care adovacy and recast it in a new mold.  Since then, other disease groups have sought to emulate it.  But no other disease group has more potential for that than does Alzheimer’s.

And as I read the Tmes article, I was struck by the fact that there are so few treatment options today, and what exist, as stated in the article, appear marginally effective.  It reminded me of the time when, in 1986, my partner had his first capsules of AZT, the only drug then available, and was about to swallow them.  All of our hope went with them.  But AZT could not stem the onslaught of the virus to the degree that any of us who were not infected could see a real difference.  So, it is similar with Alzheimer’s today.  We have the playbook, let’s do it.

A good part of the article profiles Robert Essner, chief executive of Wyeth, which is working on new Alzheimer’s medications rooted in both theories of the disease – that the plaque build-up in brain causes Alzheimer’s (though many think it a symptom) and those thinking that the cause is another protein.

Clearly what is needed is more research.  The current state of treatment, like the early days of AIDS, is not sufficient to meet the need.  New treatments need to come forth.  One hopes that all of the concern these days of risk over benefit does not impede that progress.  But what is sorely needed is, as Robert Essner pointed out in the article that "Alzheimer’s should garner the same attention that AIDS received during the 1980s and 1990s, when a coalition of government and industry worked feverishly to find treatments."

That did not just happen by itself.  Remember, AIDS was affecting the most disenfranchised groups in the United States – gays and IV drug users.  Yet that mobilization took place because of a grassroots effort that was a combination of activism – and activism is well planned, well messaged public affairs work.  It is not an accident.

According to the article, Robert Essner recently testified before the Senate that a doubling of NIH budget is needed to research Alzheimer’s – from its current $643 million.  Given the impact of Alzheimer’s on the Boomer generation, and the threat that is being faced, that is an understatement. 

But it won’t happen by itself.  A movement is not created by a DEO testimony.

It would seem that given the victims of this disease are not the most disenfranchised – they are our mothers and fathers and even ourselves as we become care-partners to the people who raised us, demands that sort of clarion call.  But it isn’t going to happen by itself.  AIDS research and discovery would not have happened on the same timeline if it were left on its own.  Someone needs to get the ball rolling with an effective public affairs campaign.  Our parents depend on us.

For more on Alzheimer’s, see the Alzheimer’s Foundation of America

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4 Responses to Alzheimer’s = An Insidious Disease State (AIDS)

  1. PharmBoy says:

    I doubt seriously that “doubling the NIH budget” for Alzheimer’s research will do anything to speed new therapies to market. What could work is a series of financial incentives for Pharma to work actively in this area, coupled with explicit recognition that biomarkers should be used for approvals. This is what was done with AIDS, and as you point out, it worked well. However, the current Congress is hell-bent on depicting Pharma as the Evil Empire, so don’t look for these things to happen anytime soon.
    Also it is important to remember that the 2 disease states are very different. Antivirals are a challenge,no doubt, but the virology and basic biology of retroviruses is well established, and, despite their deadly nature, they are simple organisms. In contrast, we know very little about the cause and etiology of dementia, and the human brain itself is unbelievably complex.
    Despite this complexity, I still believe the way we will learn what we need is through our old pal Big Pharma. Allowing companies to get therapies on the market sooner, explicit recognition that the risk: benefit might be different in this population, and favorable patent protection will do much more to help Aunt Edna than throwing more cash down the NIH rat-hole.

  2. Mark Senak says:

    Yes – thanks for your comment. And no doubt, the two diseases are very different. I was trying to actually just compare the state of being – the then – when there were no effective treatments and a huge challenge lay ahead to – the now – which is similar.

  3. nancy says:

    You’re talking about health advocacy – there’s a long tradition of it in cancer.
    The HIV community was pretty impressive – they not only got public support and research $$, they also shaped the research agenda (both public and private). I’ve seen that happen in “simple” diseases, but not so much in “complicated” ones like cancer. I suspect that alzheimer will be similar to cancer because it’s complicated – the previous poster framed that issue very well.
    If the HIV community hadn’t gotten engaged with all aspects of the issue – if they’d focused on public opinion and raising $$ – I don’t think we would be where we are today. They forced the funding of research that would pay off, and forced access to treatment.
    Google “Newsweek Cancer Genome” and look at the article … there’s (imo) a fundamental disconnect between patients and research in a lot of cancer research.
    >

  4. Mark says:

    Nancy, thanks for the great insight!