How you can help fight Alzheimer’s
I’ve been learning about (and funding) work on Alzheimer’s Disease for a few years now. In a wrap-up blog post at the end of last year, I wrote about the one area of Alzheimer’s research where I didn’t see a clear path forward: How can we efficiently find enough volunteers for the medical studies that will help us understand the disease better and point toward new ways to diagnose and treat it?
I wish I could tell you that I’ve come across some breakthrough solution for this problem in the past year. I haven’t. But I have learned a lot about why the problem is so hard, where we should look next for possible solutions, and how individuals can help. I thought I’d share what I’ve heard so far.
First, it’s worth recapping why this problem matters. Alzheimer’s is a terrible burden already, and it’s only going to affect more people as the population gets older. Nearly 6 million Americans are living with the disease today, and by mid-century, the number could be as high as 14 million. According to some estimates, caring for people with Alzheimer’s and other types of dementia could cost more than $1 trillion a year by 2050 in the United States alone.
What’s more, we don’t have the scientific tools we need to stop Alzheimer’s. There hasn’t been a new drug for it approved in more than 15 years. That’s in part because it’s so hard to run clinical trials for this disease; the average clinical study for Alzheimer’s takes 4 to 8 years, versus just 1.5 years for a typical study of cardiovascular disease, and is also much more expensive to run.
To understand this problem in more detail, I met with a number of Alzheimer’s experts this year, including researchers supported by the National Institutes of Health. I also asked a group that runs drug studies for pharmaceutical companies to examine the barriers and potential solutions. After talking with dozens of patients, caregivers, doctors, and people who run clinical trials—and surveying many more—we learned about a number of things that make it hard to find volunteers for Alzheimer’s studies.
For one thing, it’s difficult to identify qualified people early enough in the disease’s progression who are willing to participate. People might experience symptoms but not realize they have the disease, and simply not bother to see a doctor. Many doctors have only a limited time with each patient, and they don’t make it a priority to talk about early Alzheimer’s—especially if the person isn’t showing any symptoms.
“There’s still no cheap, effective way to diagnose the disease.”
But suppose the patient makes it to a doctor and the subject of Alzheimer’s does come up. There’s still no cheap, effective way to diagnose the disease. The definitive tests are expensive or invasive—one of them requires a spinal tap, which involves using a needle to puncture your spinal cord—and the doctor may not order them. If she does, her patient might not want to take them. Many people don’t want to find out if they have the disease earlier, because there’s no way to treat it.
Yet even if it turns out to be Alzheimer’s, there are still hurdles to getting into a clinical trial. The doctor might not know about any studies to send her patient to. (The vast majority of people with Alzheimer’s never learn about the chance to take part in a clinical trial.) Or the potential volunteer might shy away from the risks or possible side effects involved in a study of a new drug.
Or she might be put off by a screening process that requires multiple visits to a clinic, invasive procedures, and hours of testing. And even with all those tests, the process isn’t very sensitive; only about 1 out of 10 people screened for certain types of Alzheimer’s trials will actually qualify.
The study itself can be even more burdensome. It can mean traveling great distances—say, if the participant lives in a rural area and the trial is being run at a university-run clinic in town—and reporting once a month for years on end.
As a result, we found that 80 percent of trials don’t meet their recruitment goals on time, which greatly increases the cost of running a trial for pharmaceutical companies. And of all the patients in the healthcare system who could be eligible to participate in a clinical trial on Alzheimer’s, only 1 percent actually do.
The more I learned about all these obstacles, the more I came to admire the volunteers who do participate, and their caregivers too. I was especially moved by James Keach’s 2017 documentary Turning Point: The Quest for a Cure. It’s about the attempt to develop a first-generation drug for Alzheimer’s, and it does a great job of highlighting the challenges and showing how heroic the participants and their caregivers are. (I helped fund a project to show the film to health care professionals and medical students and faculty.)
Here’s a clip from the movie where you meet a couple of patients, their caregivers, and doctors:
The research group I worked with plans to share its findings with the Alzheimer’s community and publish a paper, hopefully next year, that will propose potential solutions. What I can say now is that we see three areas that are worth exploring:
- Increase awareness of Alzheimer’s, so patients start seeking help earlier in the disease’s progression.
- Develop better diagnostics so that doctors can detect the disease sooner and help people enroll in the right clinical trials. (I’m one of a few partners funding work on this through something called the Diagnostics Accelerator.) Researchers are working on various solutions, including simple blood tests and voice analysis performed by a computer.
- Raise awareness of—and openness to—clinical trials among doctors and patients alike.
My hope is that the clinical trial process becomes a lot easier for patients and researchers in the near future. There are a number of people exploring ways to speed up the process. One of them is Dr. Jessica Langbaum, a neuroscientist I met earlier this year, whose lab is developing genetic tests to identify, earlier and more cheaply, people who might qualify for studies on how to prevent Alzheimer’s. Another researcher I’ve met, Dr. Michael Weiner, has created a registry that uses online quizzes to identify potential volunteers.
If you’ve been diagnosed with Alzheimer’s, or if you’re caring for someone who has, I encourage you to consider getting involved in a study. In the United States, the National Institute on Aging has a great online tool that can find one near you; the United Kingdom’s National Health Service has a similar tool. Dr. Langbaum’s Alzheimer’s Prevention Registry and Dr. Weiner’s Brain Health Registry are also great resources.
One of the many awful things about watching someone you love struggle with Alzheimer’s is the feeling of helplessness. You keep thinking, There must be something more I can do. Joining a study won’t make that feeling go away, but by pitching in to fight this disease, you can know that you might help make life a little better for future generations.
This originally appeared on gatesnotes.com.
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3 年La prévention est très nécessaire
Executive bei Athene
3 年BSE is when people woman Evas play calling, diary, sugar farming, money trades and bets...
Vanadis LLC - CEO
4 年My name is Hiroaki Nagasawa. I am the CEO of a company called Vanadis LLC, which develops therapeutic agents for Alzheimer's disease in Tokyo. My partner, Takaomi Aoki, has been studying Alzheimer's for over past 20 years and has completed the Aoki hypothesis. After graduating from Tokyo University, Mr. Aoki got a job at Asahi Kasei and became independent after the age of middle 40. After that, he worked as an advisor to famous Japanese politicians such as the father of former Prime Minister Abe, and then studied Alzheimer's disease for nearly 20 years. I explain the Aoki hypothesis briefly. We support a paper published by Harvard University medical school and others that the cause is calcium deficiency and depletion in brain cells. It was almost impossible to artificially inject calcium into brain cells, and further theoretical development was not progressed at Harvard University. Mr. Aoki says that by drinking vanadium ionized water, calcium flows into every cell. It was hypothesized that brain cells would also be activated and Alzheimer's would be improved. People with lifestyle-related diseases such as diabetes, triglycerides, and laxative constipation can also be improved. The current research in the world is that the accumulation of a protein called amyloid β is the cause, but as a result of brain dissection of a famous twin women who died in Japan over 100 years old with brilliant minded, lots of amyloid β are tightly attached on their cranial nerves. Yes, it is the view that the cause theory of amyloid β is different even if you look at it. I think that the Aoki hypothesis is the similar as the Columbus egg in that it can be solved with something that is too familiar. A professor at Tohoku University in Japan also supported this Aoki hypothesis, and recommended to try a simple clinical trial first, and the above-mentioned Vanadis LLC was established for this purpose. It is not a clinical trial with normal drug discovery, but a clinical trial that only drinks ionized water with a high vanadium concentration that is springing at the foot of Mt. Fuji in Japan that already exists in the world, so it will take less than one year until some results are obtained.We can also keep costs to a minimum. People living at the foot of Mt. Fuji have been drinking water for hundreds of years, and there were no side effects, and I think that the number of elderly people in this region who have Alzheimer's disease is smaller than in other regions. A simple clinical trial can prove the Aoki hypothesis and apply for a patent. For that, funds are absolutely necessary. With a million dollars, I think a simple clinical trial is possible. Our business model is to obtain the world patent and make the license contract with world famous pharmaceutical company such as Pfizer who know the better use of the vanadium ion water, or vanadium itself. We are approaching a large Japanese company, but it takes a long time to reach a conclusion as a Japanese company, and the researchers at that company first oppose it because of their self-protection. To that end, I think it's best to talk to an individual investor who can make quick decision and who is enthusiastic about solving this Alzheimer's problem, and I know that Mr. Bill Gates has often been talking about Alzheimer's. So I decided to take the plunge and consult with him this time. The Vanadis homepage has sentences in English for Japanese papers, but please refer to them (although I'm worried if the translation is successful). https://vanadis.tokyo We look forward to your consideration. With best regards, Hiroaki Nagasawa [email protected] +81-90-9203-6801 iPhoneから送信
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4 年Bill Gates La ricerca va per conto suo, ma io ho assistito continuamente per 7 anni non uno ma ben due persone, Alzheimer e Corpi di Lewy (peggio di Alzheimer). Potrei scrivere un libro (ma c'è la privacy, poiché sarebbe utilissimo per altri che dovranno appena iniziare a seguire i malati, soprattutto a casa). La mia esperienza è da ambiente privato, dunque molto attenta ad ogni minimo cambiamento, un contatto permanente con il dottore ed interpretazione personalizzata sul trattamento. Il discorso, il paradosso è un'altro. Per un malato che non parla, non comunica che - leggendo lo sguardo, una parola ogni tanto (che poi indagavo di dove l'aveva presa, trovavo un titolo di una rivista che era sul tavolo, una trasmissione tv), un quadro con le foto dei familiari ... Non parlava, ma ogni tanto "collaborava" inventandomi giochi, la tabella della moltiplicazione - esatta. Aveva una grande fede, mi avevano raccontata, anche io ho, con solo questa fede - ogni sera, per quanto la malattia ha permesso, recitavamo insieme. "L'ave Maria e Padre Nostro - intero", la memoria era solo per questo. Più tardi quando non parlava più, solo alcune parole, recitando se io mi fermavo, metteva il ditto sulle mie labbra perché continuassi a pregare. Passano alcuni anni, non parla MAI più, quando un giorno cade, bate la testa e noto che "parla", per 3 minuti. Nessuno mi avrebbe creduto, registro subito, che cosa? Sempre le sue preghiere preferite: Ave Maria e Padre Nostro, nella maniera che io recito, lei continua, se lei si ferma continuo io, poi lei e così finiamo la preghiera. Finita la registrazione, non ha parlato mai più, nemmeno un'altra volta quando aveva batuto la testa. Il suo collaborare, per chi non ha parlato per anni, una voce, come un volume basso che aumentava man mano, ma la coerenza della preghiera era perfetta. Completa ed era come lei stessa si stupiva della sua voce che era una cosa strana. Questo effetto fa la fede in Dio.