AFAIK Dispatch #6 — Alzheimer’s Families for Action, Innovation and Knowledge
As seen in previous Dispatches, pharma is an easy target to criticize. But they have enablers. One is the investment community, which is in business to get returns, not to make moral choices. Another is journalistic channels of information, where very little of therapeutic use reaches the media that families consult, other than the usual Walks to End Alzheimer’s. And both of those beg the question of the efficacy of non-profit organizations who raise money on behalf of Alzheimer’s sufferers, who are all about the moral high ground but do not expend most of their resources to fight the toughest research battles.
Investors are bloodless. They want financial returns, as is their job. In turn, the pharmaceutical and medical device industries are a for profit enterprise. Their goals do not primarily align with patients and their families.
I follow one information source called ALZFORUM. It is a news source that along with news on clinical trials published initial reactions from medical practitioners. It has been helpful to me to appreciate the depth and subtleties of how the medical establishment works; the accumulation of evidence in support or not of new treatments.
ALZFORUM states that “Alzforum is operated by the FBRI LLC. FBRI LLC is a wholly owned subsidiary of FMR LLC. FMR LLC and its affiliates invest broadly in many companies, including life sciences and pharmaceutical companies.” You only have to do a quick google search to find that FMR LLC is doing business as Fidelity Institutional Asset Management”, i.e., Fidelity Investments. (Full Disclosure — This is actually the discount broker that I use.)
And so, while I appreciate informed financial advice, I find it odd that an investment house is moderating a discussion of medical treatments and practice, and that doctors find that to be important enough to use as a forum. I am frustrated by lack of advances in AD treatment, and it’s important to realize that one of the root causes is that large pharmaceutical companies devote their efforts to where the financial returns are highest, not where the need is greatest. This can include putting more research dollars into more tractable diseases. Again, I am frustrated by at least 20 years of failure to see a cure or anything close. Perhaps this is already plain, but the free market does not have the most efficient outcome for the AD sufferer.
And to relate this to my promotion of neuromodulation as a possible path, ALZFORUM doesn’t even seem to cover that modality — perhaps because of their pharmaceutical audience, or perhaps as a general investment preference?
One aspect of this form of privatized journalism and medical debate is that it feeds a short attention span. After the disclosure of the apparent fraud behind the initial studies that pointed to amyloid plaque as cause, in the coverage of the next drug (lenecumab) to announce success, the story characterizes the study as “validating the Amyloid hypothesis.” After the exposure of fraud and a long line of drug failures, this comes across not only as premature but as pure cheerleading as well, but again that’s the nature of serving an audience that seeks a big financial payoff, first and foremost.
There’s a certain profit mentality that shows up in journalistic sources of information. I use email updates from FirstWord.
FirstWord is an innovative industry intelligence leader serving over 260,000 HealthTech and pharma professionals worldwide. FirstWord’s products and services are designed to help you gain a competitive edge by making key decisions with speed and confidence.
Their audience may be “Health Tech and pharma professionals”, but it seems less for medical professionals and more investor–oriented; for example, a digital therapeutic product Brain+ is characterized as part of the parent company’s “Digital dementia product portfolio” https://www.firstwordhealthtech.com/story/5668337
(BTW as far as that goes, I’m skeptical of digital therapeutics generally, as more geared toward assessment and diagnostics. My brothers and I didn’t need a digital assessment of whether my mother needed AD care. Its apparent to most families as they do their own, sad, “assessment.”)
Previous AFAIK dispatches reported on the controversial approval of an AD drug with mixed research results, and then another. FirstWord more recently reported on the failure of another drug to show results. The newsletter then quoted a financial analyst whose primary take was that “the failure of gantenerumab ‘takes out the biggest competitive risk to lecanemab’…Lecanemab, if it reaches the market, seems certain to face one less competitor, but the failure of gantenerumab could amplify beta-amyloid skepticism.” This is an example of an informed set of observations for the subscribers (investors) of the newsletter, but this material never surfaces in the popular press, or even in the communications vehicles of the non-profit associations.
Non-profit (Non-delivery?) Associations
The mother of one of my cousins was suffering from Alzheimer’s around the same time as my mom. After both our moms had passed, my cousin started up a local group in the Walk to End Alzheimer’s annual fundraiser organized by the Alzheimer’s Association. I don’t often support friends and families’ charities in favor of the ones I research and support, but in this case, I felt a strong emotional bond and so would pledge a small amount for her group every year.
But now, after many years of frustration at the lack of progress, I started to wonder about the actual efficacy of many of these non-profits who generate support from the families of many sufferers.
In the case of the Alzheimer’s Association, I have looked into their budget which, like all formally organized (for tax purposes) non-profits, is publicly available. Their programs fall into four primary categories — care and support, research, awareness, and advocacy
“Every dollar you raise benefits those affected by Alzheimer’s disease in your community” is the promise. Here is a pie chart from their annual report.
The fundraising and administrative percentage seems in line with many credible non-profits. Here’s how the other 79% plays out:
Total Revenue, 2021 $406 million
Total Spending by Category
Program Services $294 million
And what do those categories mean?
Care and Support
“Available around the clock 365 days a year via our locations in communities nationwide, our award-winning website and our 24/7 Helpline, the Association is instrumental in providing and enhancing care and support for all those affected by Alzheimer’s and all other dementia through a commitment to reliable resources, support and information.”
I don’t recall ever hearing any of the caregivers for my mother or my mother-in-law say word one about how AA is helping improve care. In fact, it’s a whole other topic, but the assisted living industry as it stands has not improved, or even changed, in the period between my mother’s and my mother-in-law’s residencies. So not sure that $96 million is money well spent.
My concern is more about a non-profit, raising money from people who don’t understand a lot about the organization does, but who play on the emotional burden that these people are carrying. Doing a Walk for Alzheimer’s makes them feel they are doing something. I can’t fault those people, but I can fault the organization for playing on their feelings without delivering what those people most want — some change for the better in the status quo. So maybe the 17% of the organization’s budget should be greatly increased; the current funding level is not having much effect.
Not clear what needs doing about awareness — not everyone has a loved one suffering the disease, but pretty much everyone knows a family who is affected.
One of their advocacy success was “Helps to pass landmark legislation such as the National Alzheimer’s Project Act, which mandated a national plan to fight Alzheimer’s.”
I guess I don’t trust efforts to “develop a plan”; would prefer funding more research into treatments.
A $300 million increase for federal Alzheimer’s and dementia research funding was signed into law due in large part to the relentless efforts of the Association and the Alzheimer’s Impact Movement, a separately incorporated advocacy affiliate.
Drives bipartisan support for federal Alzheimer’s and dementia research funding, which reached $3.4 billion annually.
Not clear how these two go together — checking the history, the prior year’s budget was $3.1 billion, and so Congress has increased it by 10%, or $300 million. Hmm. That’s ¾ the size of the AA budget. So, if research is the priority why not pledge to increase AA’s research budget by 10%? Or 50%? For 2021, all programs were cut back around 10%, but one certainly could have altered those priorities in the direction of an actual cure. Not much clarity in the annual reports around why those percentages are the way they are, but it feels very much like the other programs are simply easier to do. It’s analogous to after years of ignoring climate change, many are now investing in resilience. As long as there is no AD cure, there is always demand for care, support, concern and awareness.
So as not to just single out AA, another organization I supported for a while after my mother died was the Fisher Center for Alzheimer’s Research Foundation. This was one I selected precisely because I wanted to be kept apprised of any progress in treatments. Their monthly email newsletter is entitled Alzheimer’s Research News You Can Use. Some excerpts from the last year:
Our second article discusses how poor vision and loss of hearing over the long term increases the risk of developing Alzheimer’s disease. So now is a great time to visit your doctor and follow up on regular medical appointments to help keep the brain in optimal health and limit sensory losses.
The warm, fresh air that improves our blood pressure and mood this time of year is not to be taken for granted. In our first article, researchers have found that air pollution plays a role in causing memory decline. However, if you’re in a low-pollution area, keeping your windows open at night may help you sleep. Our second article discusses the link between sleep deprivation and dementia, predicting an increased chance of developing dementia by as much as 30%.
In this edition of Alzheimer’s Research News You Can Use, our first article reveals that one’s risk of developing Alzheimer’s may be increased by eating processed meats, while our second article further emphasizes the benefits of exercise in lowering your chances of developing Alzheimer’s. This new research continues to show that maintaining a healthy lifestyle, eating well and exercising regularly, may lessen your risk of developing Alzheimer’s.
This is starting to sound a lot like “everything gives you cancer” — and really, eating well, getting enough sleep and exercising regularly may lessen your risk of, well, everything. This “news” hardly seems worth supporting. I do note that on a percentage basis, 80% of the donations to Fisher goes to research; the constant emails made me think they were bigger than they are. Their annual budget is under $10 million total, and is very specific…
The Fisher Center for Alzheimer’s Research Foundation is an organization that provides millions of dollars for novel Alzheimer’s research primarily conducted by the late Nobel Laureate Dr. Paul Greengard. Dr. Greengard collaborated with scientists all over the world to investigate the latest, most promising research available. These collaborations continue in his absence
So, for me as a retail consumer so to speak, I did feel my money made a difference in that organization. But from an “investment” point of view, I was putting all my money on one bet, exactly what financial advisors tell you not to do. In any case, I stopped giving Fisher money mostly because of the newsletter, and its message that here’s how research is helping, when it’s mostly bromides.
So where does one turn? I wish I could tell you where donations are best placed. In part, my gut feeling the investor discussion at the beginning of this article probably indicates that private capital investment support of Alzheimer’s research outweighs the non-profit organizations by a considerable amount. (I’d welcome any pointers toward proving or disproving my guess.)
In the meantime, in lieu of money, I’m trying to publicize the existence of neuromodulation alternatives, both as an under-researched modality and as a potential much less expensive treatment alternative. Future AFAIK Dispatches will continue to focus on the news from that sector.