Log out
My profile and settings
My bookmarks
Comment history
Please complete your account verification. Resend verification email.
today
This verification token has expired.
today
Your email address has been verified. Update my profile.
today
Your account has been deactivated. Sign in to re-activate your account.
today
View all newsletters in the newsletter archive
today
You are now unsubscribed from receiving emails.
today
Sorry, we were unable to unsubscribe you at this time.
today
0
0
Back to profile
Comment Items
You have not left any comments yet.
title
in reply to
name
description
Saved Posts
You haven’t bookmarked any posts yet.
“Jared Diamond says he owes the idea for his new book Upheaval to his wife, Marie Cohen, who’s a psychologist.”
read more
Become a Gates Notes Insider
Sign up
Personal Information
Title
Mr
Mrs
Ms
Miss
Mx
Dr
Cancel
Save
This email is already registered
Cancel
Save
Please verify email address. Click verification link sent to this email address or resend verification email.
Cancel
Save
Address
Cancel
Save
Email and Notification Settings
Send me updates from Bill Gates
You must provide an email
On
Off
Send me Gates Notes survey emails
On
Off
Send me the weekly Top of Mind newsletter
On
Off
Email me comment notifications
On
Off
On-screen comment notifications
On
Off
Interests
Select interests to personalize your profile and experience on Gates Notes.
Saving Lives
Energy Innovation
Improving Education
Alzheimer's
Philanthropy
Book Reviews
About Bill Gates
Account Deactivation
Click the link below to begin the account deactivation process.
If you would like to permanently delete your Gates Notes account and remove it’s content, please send us a request here.
Trials and tribulations
Here’s a way you can help fight Alzheimer’s
Get involved in a study to understand the disease.
|
0

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.”
“There’s still no cheap, effective way to diagnose the disease.”
“There’s still no cheap, effective way to diagnose the disease.”
“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.

Read this next
NEXT
Comments
posting ...
Please verify your email in order to make comments. Click here to resend verification email
Sorry, duplicate comments are not allowed. 
Sorry, that HTML is not allowed. 
Sorry, something went wrong. 
In order to comment you must be a Gates Notes Insider. Please sign up or log in to continue. 
Be the first to leave a comment.
Comment Locked
Comments more than 2 months old are locked. For more information, contact us.
Report
Delete Comment?
Deleting this comment will remove replies to this comment by you and others as well. This action cannot be undone.
Delete Comment
Why do you want to report this comment?
It's annoying or not interesting
It's abusive and/or vulgar
It's spam
Report Comment
Your report has been submitted.
Close
Save
Cancel
Thanks for visiting the Gates Notes.
We'd like your feedback. Yes, I'll take the survey No thanks
Become a Gates Notes Insider
Join the Gates Notes community to access exclusive content, comment on stories, participate in giveaways, and more.
SIGN UP
Already joined?
Log in
Logout:


Become a Gates Notes Insider
Become a Gates Notes Insider
Join the Gates Notes community to access exclusive content, comment on stories, participate in giveaways, and more.
Already joined? Log in
LOG IN
SIGN UP
Use your social account:
Or sign up with email:
Title
Mr
Mrs
Ms
Miss
Mx
Dr
This email is already registered. Enter a new email, try signing in or retrieve your password
Why are we collecting this information? Gates Notes may send a welcome note or other exclusive Insider mail from time to time. Additionally, some campaigns and content may only be available to users in certain areas. Gates Notes will never share and distribute your information with external parties.
Bill may send you a welcome note or other exclusive Insider mail from time to time. We will never share your information.
Sign up
We will never share or spam your email address. For more information see our Sign Up FAQ. By clicking "Sign Up" you agree to the Gates Notes Terms of Use / Privacy Policy.
Street address
City
postal_town
State Zip code
administrative_area_level_2
Country
Data
Gates Notes Insider Sign Up FAQ

Q. How do I create a Gates Notes account?

A. There are three ways you can create a Gates Notes account:

  • Sign up with Facebook. We’ll never post to your Facebook account without your permission.
  • Sign up with Twitter. We’ll never post to your Twitter account without your permission.
  • Sign up with your email. Enter your email address during sign up. We’ll email you a link for verification.

Q. Will you ever post to my Facebook or Twitter accounts without my permission?

A. No, never.

Q. How do I sign up to receive email communications from my Gates Notes account?

A. In Account Settings, click the toggle switch next to “Send me updates from Bill Gates.”

Q. How will you use the Interests I select in Account Settings?

A. We will use them to choose the Suggested Reads that appear on your profile page.

BACK
Forgot your password?
Enter the email you used to sign up and a reset password link will be sent to you.
This email is already registered. Enter a new email, try signing in or retrieve your password
Reset Password
Reset your password.
Set New Password
Your password has been reset. Please continue to the log in page.
Log in
Get emails from Bill Gates
Send me updates from Bill Gates
You must provide an email
On
Off
Email me comment notifications
On
Off
On-screen comment notifications
On
Off
This email is already registered
Finish
We will never share or spam your email address. For more information see our Sign up FAQ. By clicking "Continue" you agree to the Gates Notes Terms of Use / Privacy Policy.
You're in!
You're in!
Please check your email and click the link provided to verify your account.
Didn't get an email from us? Resend verification email
Upload a profile picture
Choose image to upload
Uploading...
Uh Oh!
The image you are trying to upload is either too big or is an unacceptable format. Please upload a .jpg or .png image that is under 25MB.
Ok
Title
Mr
Mrs
Ms
Miss
Mx
Dr
Cancel
Save
This email is already registered
Cancel
Save
Please verify email address. Click verification link sent to this email address or resend verification email.
Email and notification settings
Send me updates from Bill Gates
You must provide an email
On
Off
Email me comment notifications
On
Off
On-screen comment notifications
On
Off
Select your interests
Saving Lives
Energy Innovation
Improving Education
Alzheimer's
Philanthropy
Book Reviews
About Bill Gates
Finish
Confirm Account Deactivation
Are you sure you want to deactivate your account?
Deactivating your account will unsubscribe you from Gates Notes emails, and will remove your profile and account information from public view on the Gates Notes. Please allow for 24 hours for the deactivation to fully process. You can sign back in at any time to reactivate your account and restore its content.
Deactivate My Acccount
Go Back
Your Gates Notes account has been deactivated.
Come back anytime.
Welcome back
In order to unsubscribe you will need to sign-in to your Gates Notes Insider account
Once signed in just go to your Account Settings page and set your subscription options as desired.
Sign In
Request account deletion
We’re sorry to see you go. Your request may take a few days to process; we want to double check things before hitting the big red button. Requesting an account deletion will permanently remove all of your profile content. If you’ve changed your mind about deleting your account, you can always hit cancel and deactivate instead.
Submit
Cancel
Thank You! Your request has been sent