30. UsAgainstAlzheimer’s Chairman and Co-Founder George Vradenburg

Published July 28, 2021

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Show Notes

Alliance for Aging Research President and CEO Sue Peschin talks with George Vradenburg, Chairman and Co-Founder of UsAgainstAlzheimer’s, about the recent aducanumab announcement, the UsAgainstAlzheimer’s Brain Guide program, and the importance of the Medicare annual wellness visit for detection of cognitive impairment.

Episode Transcript

Sue Peschin:

Hi everyone, and welcome to the Alliance for Aging Research’s podcast, This is Growing Old. I’m your host, Sue Peschin. I serve as president and CEO of the Alliance for Aging Research. Today, I am lucky to be talking with George Vradenburg, chairman and co-founder of UsAgainstAlzheimer’s. I’ll be speaking with George about the recent aducanumab announcement, UsA2’s Brain Guide program, and the importance of the Medicare annual wellness visit for detection of cognitive impairment.

Sue Peschin:

George, thank you so much for joining us today.

George Vradenburg:

Sue, it’s good to be with you.

Sue Peschin:

So could you please start off telling our listeners a little bit about the mission of UsAgainstAlzheimer’s and the Brain Guide program that you just released?

George Vradenburg:

Sure. UsAgainstAlzheimer’s launched in 2010 with the goal of preventing Alzheimer’s. Not a surprise, but in fact, it’s taken a longer path than we thought it would take. So that’s our mission, is to stop this damn disease. It’s affecting so many people. It’s costing society such a great amount of money and people a lot of money, families. So we very much set off to try and stop this disease. We didn’t think that the business is usual attitude that existed back in 2010, Congress would not increase funding for NIH research and Alzheimer’s asymmetrically. That has changed. The belief that in fact no one could collaborate in the Alzheimer’s space, leaders engage in Alzheimer’s disease or the LEAD Coalition demonstrates that that is not the case. And that you can’t speed science, and the answer is no you can. So that is in fact what we’ve been able to do over the last 10 years. So that’s our mission, stop Alzheimer’s, prevent Alzheimer’s.

George Vradenburg:

Brain Guide is a brand new tool developed with Amazon Web Services, with some support from Biogen, which basically is a private conversation that you can have and get your brain health assessed to test your cognitive impairment. Why would you want to do that? To see whether or not your natural worries about your forgetting words or names is something that is sufficiently significant that you ought to see your doctor or not. Because so many people are worried about their brain health these days, but not knowing whether or not this is of sufficient level of concern they had to talk to a doctor about it or not. Many people are shy about talking to their doctor about brain health, shy about talking to their family about brain health, should they be concerned? And if so, what should they do? And so this Brain Guide enables you to make an assessment of your brain health and also to get adequate resources either by referrals to local organizations that support those with Alzheimer’s or others that give you more information about brain health.

Sue Peschin:

Okay. And certainly there’s a lot of other things that can affect memory and cognition other than Alzheimer’s disease.

George Vradenburg:

Absolutely. And so polypharmacy, diabetes, vitamin deficiency, there are a variety of things that can affect your brain health. And you ought to know whether there’s sufficient concern to see a doctor.

Sue Peschin:

Right. And depression, for sure. How do you think the Brain Guide is going to encourage people to speak with their healthcare providers about memory concerns? Because you may go through a test online and the test may say, “Hey, there’s a concern here.” But a lot of people sometimes will get really afraid when they see that. So tell us a little bit more about how the Brain Guide encourages people to speak with their healthcare provider.

George Vradenburg:

Well, one of the things that we’ve found, and there are now over 200,000 people that has basically visited the website, and close to a 100,000 people have actually taken the assessment, is that they need an excuse to go talk to their doctor. Excuse is not the right word. They need a trigger to go talk to their doctor and they can’t just open up, “I’ve got a concern about memory.” Because the doctor doesn’t know what to say about that. So on our version 1.0, one of the first feedbacks we got is, “Enable me to print out the result of this assessment.” Because they wanted to take it to their doctor to say, “I’ve just done an assessment, and this is what it says.” So that in fact what it does is encourage them to do that. It also refers them to other resources about brain health concerns so that they can look at other things that they can do in the way of lifestyle or comorbidity management or other kinds of considerations. And it also provides them, if needed, access to local community-based organizations that might provide support if in fact they have serious mental health concerns or brain health concerns.

Sue Peschin:

Oh, that’s great. So it’s very comprehensive in breaking it down. I actually went through it and, of course, you’re tempted to take the test because you never know. And I just thought it was great and very user-friendly. And, of course, having previously worked at AFA, it uses a very common screening tool that’s well-regarded. So it’s a terrific resource. But I wanted to ask you about the Medicare annual wellness visit, which includes the directive for physicians to look for cognitive impairment. And I wanted to get your take on how you think that’s working.

George Vradenburg:

Well, the annual wellness exam itself is not widely used by Medicare beneficiaries and should be widely used by Medicare beneficiaries. So in fact, I can’t emphasize enough how important it is to take advantage of this free benefit for Medicare, an annual wellness exam. With respect to the actual cognitive assessment, doctors don’t really have any particular tool that they use, no assessment tools, and they tend to observe unless a patient raises an issue about memory concern, that cognitive assessment that is supposed to be done by doctors really isn’t done. It’s not very effective.

George Vradenburg:

And so we have been sponsoring something called The CHANGE Act and promoting it in Congress, which would require the use by doctors in the annual wellness exam of a standardized and validated cognitive assessment tool. So that in fact there is a regular system by which there is, for those that are taking advantage of this free benefit, an assessment tool. So that every year you get an assessment using the same standardized and validated assessment tool. And you can tell whether there’s any change in your cognitive capacity. So that’s what we’ve been pressing, to improve this annual wellness exam opportunity that people have not been taking advantage of and doctors have not been exercising terribly effectively.

Sue Peschin:

That’s great. And we are supportive of that, just so you know, of The CHANGE Act, which I think is terrific.

George Vradenburg:

Thank you. Well you and I have had a mind-meld on these issues for years, so thank you.

Sue Peschin:

Exactly. And I think it’ll also maybe spur some change with the US Preventive Services Task Force, and maybe shine a bit of a spotlight because they’ve been reviewing this issue for going on 20 years now and something needs to change, so it’s a perfect name.

Sue Peschin:

So we, the Alliance for Aging Research, just updated our Wellness Wisdom fact sheet on the Medicare annual wellness visit to highlight the cognitive impairment component. Why do you think it’s important for people to advocate for their brain health with their healthcare providers?

George Vradenburg:

Well, we typically go to doctors when we have symptoms of something and we don’t know what may be causing it, or we may have suspicions of what is causing it. It is a natural conversation, talk to your doctor, whether it’s a primary care physician, or for many people who now rely on OB GYN as their general, but their general practitioner to say, “I’m feeling this or I’m feeling that, or this hurts.” And we ask our doctor, “What is it?” We don’t do that with our brains. It’s just not a natural act for us to do that with our brains. And it’s not a natural act for physicians to talk to you about your brain health.

George Vradenburg:

So I do think that just like every other organ of our body, we ought to be asking our physician, “What’s causing what I think may be a symptom that I can’t quite understand, or am I feeling? And is this a symptom to worry about? A symptom not to worry about? What might be causing it? What might I do? “We do this in the regular course of our lives with respect to every organ in our body. We don’t do it with respect to our brains. And yet our brain is basically the operating system of our body. And it should be not only as important but perhaps more important for us to be asking about symptomatic concerns that we have about our brain health.

Sue Peschin:

Mm-hmm (affirmative) Right. That’s right. And I think a lot of times too doctors are worried about bringing something up, especially when they may feel like they don’t have a lot of resources to give the person or not much in the way of treatment to offer them. Which leads me to my next question, which is, what do you think of the new FDA approval for Aduhelm? And along with that, I wanted to get your thoughts on what do you think the impact is going to be on other research programs for new treatments?

George Vradenburg:

So let me respond to the needs of the initial part. I do think that there are lots of things we can do for our brain health, without regard to whether there’s a treatment. There are lifestyle changes that we can make.

Sue Peschin:

That’s right.

George Vradenburg:

There are certain kinds of medical issues like hypertension and diabetes that actually can affect your brain health in ways that we really don’t and haven’t ever really appreciated. So bringing up the issues about brain health with your doctor is important, whether or not there’s a treatment. So that’s number one. Number two, patients did advocate for the approval of this drug because there is evidence that in fact this drug not only reduces the levels of beta-amyloid in your brain, the toxic protein, but also has some cognitive benefit. The evidence on that latter course was somewhat ambiguous, but nevertheless, there was a reasonable basis for believing that there was a cognitive benefit to this drug. We don’t have drugs that just modify the course of the disease. Patients do not have any treatment option today.

George Vradenburg:

So we advocated for this in the belief that, A, it would be a treatment that could be good for some people in the early stages of their disease, and it would stimulate other companies to get into the game. And so in fact, it would create a good deal more investment, and a rapid increase in pickup and the pace of innovation. Why do we believe that? Look what’s happened to oncology. The FDA has approved a number of drugs for cancer with very limited clinical benefit, but with some evidence that it does reduce tumor size or otherwise slows down the rate of tumor growth. And they’ve done that consciously over a number of years now, because what it’s done is caused a lot of people to go into the cancer field because they know that they’ve got a receptive FDA if they can demonstrate some effect on some underlying pathophysiology of the disease and show some signal that it could have a clinical benefit. And by doing that, they have encouraged now a thousand, more than a thousand, clinical trials for oncology drugs.

George Vradenburg:

We have maybe a hundred clinical trials for Alzheimer’s. So we wanted them to do for neurodegenerative disease, for Alzheimer’s, what they’ve been doing for cancer. They did that. Controversy around the drug, whether there was an adequate showing of clinical benefit to the drug, but the FDA is requiring a subsequent trial to do that. They gave them a long period of time. It should be a shorter period of time. We ourselves are working with Duke-Margolis to set up a real-world evidence platform that in fact will assess the clinical benefit of not just aducanumab, but of the Lilly drug, who they’ve announced that they’re going to come to the FDA for approval at the end of the year. The ASI drug will come to the FDA for approval next year. A roast drug no doubt coming to the FDA next year.

George Vradenburg:

It’s going to be a very confusing time here as we began to get a medical system that has not been used to talking about brain health or treatments for Alzheimer’s to figure out which drug is right for which patient at which stage of the disease. We’re also going to have symptomatic treatments and doctors ought to get used to the fact that they’re also going to be drugs for neuropsychiatric symptoms, for insomnia. So doctors, the medical profession hasn’t dealt with this, they are shocked, they don’t know what to do, they’re going to learn, and that’s good for us over time. It’s good for us and this treatment is going to be good for us. Drug is expensive, but the out of pocket expense for most Medicare beneficiaries is not going to be that great. Except for those with fee for service who don’t have a supplemental insurance policy. And for that, it’s going to be about 10,000, $11,000 a year, and that’s a lot. And so we have to work on, “What is going to take down those costs? How are we going to manage those costs?”

George Vradenburg:

But now we’re onto better problems than not having anything. We now have something to work with. We’re going to have more things to work with next year. There’ll be competition in terms of the power of the drugs and the cost of the drugs. And we are going to have to, as patients, begin to take some ownership now of the issue ourselves to figure out what is working for which of us.

Sue Peschin:

That’s awesome, George, thank you so much. That was so well said. And I just want to add with neuropsychiatric symptoms that there’s certainly also work in the clinical pipeline for dementia related psychosis, agitation, so there’s quite a bit that’s going on. And I also think that’s also very exciting because people who are dealing with that as individuals and also within their families, it can be very challenging. And the Alliance actually put just recently two new pocket films on neuropsychiatric symptoms called Shake the Stigma because they are so stigmatized. We talk a lot about memory loss and cognitive issues. We don’t talk quite as much about NPS, neuropsychiatric symptoms. And I love to hear that you’re engaged in potentially setting up, it sounds like, a registry, patient registry?

George Vradenburg:

Start with a registry and probably move to a pragmatic clinical trial. So we can really assess those patients who aren’t on drug, but with similar symptomatic status who don’t want to take the drug for any reason, or who are precluded from taking the drug because of concerns about side effects or exposure to side effects, what it is that happens to their memory, so we can compare and contrast those that are on drugs, and those are not on drugs. But also we can compare and contrast those that are on a aducanumab drug versus those that are Lilly drug versus those on a Roche drug.

Sue Peschin:

Oh, I love it, a head to head. We need those. And it would be great if you somehow also integrated PCORI into the mix to make sure that-

George Vradenburg:

Good idea.

Sue Peschin:

Yeah, yeah. So this is a question we ask all of our guests, when you were a kid, what did you imagine growing older would be like?

George Vradenburg:

I imagined the growing older was being 65 and going on Medicare. But I had a very healthy parents until right to the end of life. But I did have grandparents who obviously experienced some… my late wife’s mother and grandmother, both experienced Alzheimer’s. And I saw what happened to them in the later stages of the disease. So I saw that, in fact, you could live healthy to the end of life and die relatively suddenly, or you could live to the end of life with many, many years of pain, suffering or isolation from your family and create a financial burden. So I had no fixed notion of what growing old was. And I guess as a kid, basically, I thought you got to 65 and then you relaxed and you played golf and you did these other things. So I thought growing older was a good time of life. I really thought life… But there were some people who experience late life disease, and that was something to be avoided.

Sue Peschin:

And you’re devoting your life to it, which is pretty amazing. So what do you enjoy most about growing older now?

George Vradenburg:

A renewed purpose in life, that in fact after having worked for a career for so long to actually have at least sufficient financial independence that I don’t have to work and you get to devote the rest of your life to trying to do something that’s good for humanity. It is the best time of life. I’m almost 80 years old, and so right now I’m experiencing what I think is the best part of my life.

Sue Peschin:

That’s awesome. George, thank you so much for joining us today.

George Vradenburg:

As always, Sue, good to be with you.

Sue Peschin:

Thanks to everybody for listening to This is Growing Old. Our intro and outro music is City Sunshine by Kevin McCloud. Please stay tuned for new episodes every other Wednesday, and you can subscribe to us on Apple Podcasts, Google Podcasts, Spotify, or anywhere else you listen to podcasts. And please rate and review us if you’re enjoying the show. Thank you for listening to This is Growing Old, and have a great day.