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Edwina Rogers – Principles of Effective Advocacy for Longevity Therapies

We had the opportunity to interview Edwina Rogers, CEO of the Global Healthspan Policy Institute and a professional public health advocate supporting aging research. Edwina has degrees in corporate finance and law. She worked for four U.S. Presidents and two U.S. Senators, helping to shape national policy regarding healthcare. We caught up with her at International Perspectives in Geroscience, a conference hosted at Weizmann Institute of Science (Israel) in September 2019, in order to discuss the principles of effective advocacy.

You have served in public policy positions and the United States, including the White House, and in private international sectors for more than 20 years, but now you’re the founder and leader of the Global Healthspan Policy Institute. What’s made you focus your attention on the problem of aging?

That’s a very good question. I have been involved in mainly health care policy, that might not be so easy to tell from my bio or my resume. But, in the White House, I worked on adding prescription drugs to Medicare In the U.S., and Medicare is the program for people who are 65 years old, the health insurance program for them, and it used to not cover prescription drugs.

In 2001 and 2002, that was a big project I worked on in the White House, and in order to do that, you have to learn how to build coalitions to get a major piece of legislation through. That’s very expensive and has to get through the House and the Senate. Then, when I left the White House, I started working in the Senate, and I also did health care policy but all kinds of health care policy, everything from global AIDS legislation to mental health parity, things like that.

When I left the Senate, I got very involved in healthcare policy for corporate America, and in corporate America, of course, they want to keep their employees happy, healthy, and working as long as possible, especially if they have special talents and they’re productive. That led me to this initiative about the Patient Centered Medical Home, which is an integrated healthcare model that is very well advanced in Denmark. We wanted to implement it in the United States, so we used a coalition to do that, and that was very successfully implemented in the United States. It improves health outcomes and lowers costs. Basically, it’s an extension of that project and that concept. Global Healthspan Policy Institute is a think tank but also an international coalition to change public policy.



While the community acknowledges they need to change regulations related to the development of rejuvenation biotechnologies, many people don’t really know where to start. As an experienced policymaker, can you briefly describe the steps to take in order to become an effective advocate for healthy life extension technologies and make a real impact on laws and regulation? What does the career of an advocate look like?

That’s also a good question. I think that the main thing that you need to do is education of the decision makers, so we stay in front of decision makers. Decision makers would be people in the executive branch who work on regulations but then also the legislators in Congress and in the Senate, members of Parliament. It’s very similar in every country.

We do briefings and outreach to the decision makers. For example, with aging, most people that I’ve met with, they were not aware at all that aging was something that could be controlled and manipulated. Therefore, it’s something that should be researched, and there should be funding for aging research. We’ve had some good success educating the right people. We’ve had people that are sympathetic and understanding of the issue. It’s been surprising that some people in high positions, especially in the U.S., in the Medicare system and Medicaid system, who are physicians, they’ll say to us that aging is something that’s a natural process, you can’t change it at all. These people are MDs, so just telling you that story right there lets you know how much education we have to do to get people up to speed on the whole aging process.

How exactly does one prepare for this stage of negotiations and education of the decision makers?

Okay. Well, the best way to prepare would be to have policy statements, position papers, and explanatory documents that are written and tailored for elected officials and their staff. They are not journal articles; they are not research articles in peer-reviewed journals. It is a document that looks quite differently. It’s much more in layman’s terms; it wouldn’t be anything that you’ve seen here today at this conference. It would be things like frequently asked questions, a briefing paper, that is short, maybe at the eighth grade reading level without a lot of technical terms. So you have documents like that that you have on your website that you also distribute.



There are also subscription services where you can email all the members of Congress and their staff, and senators. We send out emails, we send out a weekly newsletter every Thursday, with articles, short articles. We write short summaries, and then we link to the fuller articles. These are articles that are not so scientific in nature, but they describe a lot of the advancements that are happening in the aging area and aging research. We’ll just pick three or four of the most important articles every week, summarize them, and write a few of our own. We send out a newsletter every Thursday to members of Congress and then anybody else who subscribes to the newsletter. So, it’s just a steady drumbeat.

Social media is important, but less important for what we do, because what really matters is if you can get in front of one or two key decision makers and get a lot done, versus having a big social movement. But that’s also very important, it’s just not exactly what we do.

If I hear you right, the main thing is to get educated yourself, to have the facts at your fingertips, and to have these facts delivered in a condensed way, as a sort of a summary, to present the facts to the decision makers in order to inform them very quickly and without too much terminology.

Yes, and we kind of call it an elevator pitch. A lot of times, when you get in front of a Senator or Congressman, you might just have three or four minutes to get them interested, so you have to have your elevator pitch ready to go, and then you can have longer conversations after you get them interested. Those are the kinds of things that we’ve worked on.

Another really important thing is, in order to get a seat at the table and get clout, you need to be part of a coalition, a big coalition, and the bigger, the better. You have to make sure that all the stakeholders are at the table. An ideal coalition for the aging community is longevity or healthspan. We chose to use the word healthspan because longevity is a little bit dicey when you’re talking to members of Congress. Because they’re thinking, oh, well, you’re trying to make sure everybody lives longer, but what are we going to do about the cost of their retirement programs, because in the U.S., we’re set at a retirement age. It’s not going up, in order for it to go up, we would have to have legislation.



If you think about an ideal coalition, you would want to have consumer advocacy groups involved, they will be very important. By consumer, I mean patient advocacy groups, that they are not left out. There’s not a big market for patient advocacy groups on aging, so we have to make the market, they’re not there. But other types of patient advocacy groups are available, but they’re all disease specific at the moment, and you need major employers, you need health plans, you need local governments, state governments, national governments, all coming together. Hospitals, providers, physicians, researchers, universities, the bigger, the better. The more diverse, the better.

Sounds very interesting. One of the projects that you’re leading involves supporting the TAME study. Could you please tell us about the main milestones that have been achieved so far in this project? What’s its current situation [as of September 2019], and what are your future plans for further support of the TAME study?

Well, TAME is a big project, the cost is about $64 million, and the principal investigators have been looking for ways to scale back the cost. It has to be done over five years and X number of sites, but we’re very fortunate that the Food and Drug Administration in the US approved a study on the first drug that could slow down the aging process itself. So, when you’re looking for $64 million, that’s a lot of money to look for, and there’s no way that anyone can make money, because the drug they’re looking at is Metformin, which is a generic drug, which costs like a few pennies. So there’s no pharmaceutical interest or money involved in that particular study.

But we are very fortunate in that, over the last two or three years, the NIH has shown great interest, and they have basically committed to more than half of the money for that particular clinical trial, and so the gap now is much smaller. The money that we’re looking for is now less than $20 million and not the $60 million between the private funds that have been pledged. AFAR is very active on this, of course; Dr. Nir Barzilai is the principal investigator.

The final gap of money that we need to start the study and kick it off most likely will be coming from private foundations, but we did have that one bit of luck finally, with NIH agreeing to pull some money from Alzheimer’s and from cancer, and from the National Institute of Aging and cobble it together and have some seed money to get it going. I would say that the funding should be complete on that, within the next two years.



Is there a way in which people from our community could actually help with this project?

I think that if more broad support was shown, even though it’s not a lot of money, I think that it would be very helpful to get foundations on board. Right now, we have the NIH, so the US government is doing their part. Then we have quite a few private foundations that have already committed with us to close this gap. We need more private foundations and maybe even corporate money, but the piece that we don’t have is the general public’s support. Even though maybe the general public support is $10,000, it could be made from 500 people. That makes it sort of a very different formula, where it shows that there is also public support, public understanding, and public knowledge of what it is that we’re trying to do, and then that would only increase the chances of getting the commitments from the last few foundations. So that would be my advice.

What are, say, three to five main political bottlenecks that have to be addressed by healthy life extension advocates in order to accelerate the development of rejuvenation biotechnology as a field? What’s your vision on how to solve these bottlenecks?

Well, probably the main bottleneck for aging research would be the lack of funding, where it’s not top of the list. And then the second bottleneck, If I had to prioritize them would be the lack of information; most people don’t understand how aging research is so incredibly important that it touches on more than 14 chronic diseases.

It’s not just disease specific, but it’s hard to take that leap, because it’s something that you can’t see: it’s not cancer, it’s not a broken arm, it’s not so specific. It’s gradual, and it’s long term. I think that the funding and also the education, educating the general public, just having more awareness about the aging process, and that it can be manipulated, it can be measured, you can measure it with a baseline, you could have interventions, and there are currently interventions that people in the movement know about but not anyone hardly outside of the movement, outside of medical providers.



I think that it’s now ready to become mainstream; more journalists interested would certainly be helpful to working on the decision makers, members of Parliament, members of Congress; having them all briefed up on this is very important. So dissemination of information, and then just the general public.

It would be great if we got Hollywood interested in this and we had a mainstream blockbuster movie that touched on aging research. Something like that can really turn the whole movement around, and it could just take off. Things like that happen; there are other examples. For example, in the gay community, they had some good success with having interest in Hollywood and made it mainstream and raised the visibility of the issue. There are other examples like that were just backwater; nobody really knew about the particular project or issue that needed to be addressed, and then a movie pops out about it. Then it’s like a household word; everybody’s pretty up to speed on it.

There are often concerns related to the possibility that access to rejuvenation treatments will not be universal. People are afraid that the treatments will be prohibitively expensive and that elites will keep the information secret. While I doubt that scientific knowledge can be truly hidden from the public, I still share the concern regarding the price tag, at least for some of the treatments, What can the public do to set the prices for new treatments as low as possible from the political point of view?

I see that concern, and I understand it, but I’m less worried about that. Because, as we already know, the gold star of the best treatments available right now is to actually diet and exercise. I think that most humans don’t know about the diet and exercise. That’s not something that is being kept secret, but it’s actually confusing information; people will be told, Okay, you need to exercise, but what does that mean? We spent about a year and a half going through all the clinical trials on exercise with regard to aging, and longevity and life extension, and the ones that outperform placebo.

We have had meetings with everything from life insurance companies, to health insurance companies, and they already have a lot of information. We know that the sort of optimum amount of exercise to make yourself more healthy and extend your life would be movement, try to get something like 7,500 steps a day, and then more intensive exercise at 150 minutes per week. We already know that that’s optimal.



And the research shows that, well, if you do 300 minutes a week, you really don’t get any improvement over the 150 minutes, you might get 1% improvement. Also, with the steps, a lot of people will get a Fitbit or something, and they know that they’re supposed to be doing steps, and it’s programmed with 10,000. 10,000 might not be obtainable for most people, and then they become discouraged, so they don’t know that you actually get your full benefit from 7,500. Anything above that is nice and fine, and it’s not harmful, but you’re not getting the benefit in your healthspan, in your lifespan, and then you’re short of that, you get maybe 60% of the benefit and 40% of the benefit, depending on how many steps on average you’re able to do. That’s an example on the exercise side.

On the diet side, of course, we know about the fasting, you coordinate fasting, you’re trying to let your body rest and not eat for a minimum of 12 hours a day, 14 will be better, 16 would be great. Beyond that, you could get into some issues; depends on your own personal health. For intermittent fasting, there are some costs associated with programs like, for example, Prolong, where you have supplements that your body cannot detect that are food. You can still eat, you can have three meals a day, you’re not eating a lot, but your body thinks you’re not eating at all, so it can rejuvenate itself.

So those are just some examples of ways that you can greatly improve your chances of living longer and increasing your healthspan, but they actually don’t cost any money. It’s just a matter of information and knowledge. Now, some of the other treatments, for example, making sure you have enough vitamin D, that’s not expensive either. Metformin has some really good science behind it; for some people, not for everybody, it costs maybe a penny or two a day. I’m currently not aware of a proven, fantastic, expensive treatment program that a billionaire could go off to, other than some of these basic things that we’re talking about, and live another 5 or 10 years and have an advantage over the rest of us.

I’m asking this question exactly for this reason: we are currently in a period of transition from when we have almost nothing except for lifestyle interventions to when we’re going to have a lot of different treatments technically available. A lot of these therapies might actually be considered to be life-saving treatments, so they should be available to the public. How can a public advocate contribute to reducing prices if some of these treatments are going to be very expensive in the beginning? We all know that the price will go down, but it might not go down very quickly

Let’s say there’s a drug that was developed by a big pharmaceutical company, in Western Europe or in the US, and it’s quite expensive. There won’t be anything major that public advocates could do other than put pressure on their governments to negotiate with the pharmaceutical companies to try to get the prices down. Some governments don’t recognize their patents when they do develop things like that. Or they’ll threaten them, basically, that if you don’t sell it to us at a discount, then we’re going to not recognize your patent, and we’re going to make it available to our people anyway. Of course, I don’t think that’s very acceptable, there has to be some way to make sure that the patent is recognized and the company that developed it is appropriately compensated for their discovery, and they’re fine, but that’s already the case with every disease in every drug around the world.



For example, AIDS, when the first drug came out, that prolonged life and people could live with AIDS, it was very expensive, and Africa needed it. That was what the Global AIDS Bill was about, to try to get that drug into Africa at a discounted rate so that the people there could have access to it. It’s a problem, but it’s a problem that I hope we get to deal with, because right now, we don’t even have that problem. Because we don’t have anything that is proven that we’re all trying to get access to; there’s not anything at the moment that is expensive that we could be fighting for. But the minute there is something, I think it will be very hard to keep it from humanity. If it’s something that is known to save lives and improve them drastically. Probably, there’ll be big pressure for it to be in the public good and open access.

Would you like to talk just a little bit about what you are doing for yourself to maintain your health over your lifespan?

Definitely, the steps and the exercise, I talked about the 7500 steps, the 150 minutes of intensive exercise, and the fasting, so that’s really good information. In the past, maybe it’s 11 o’clock at night, and I haven’t gone to sleep, maybe I’m going to go downstairs and have a cup of hot chocolate. Now I know that I should not do that. Instead, I’m trying to limit my intake of food in the shortest period of time each day and doing the longer fast periods with this diet that I mentioned. So I do use Prolong, it’s a five-day diet that mimics fasting, where your body can’t detect that you’ve eaten anything, and all the numbers come back much better when I measure things. I also use something called Inside Tracker. Inside Tracker has a program that is called Inner Age, and it tells you what your biological age is, what your age is with regard to your biomarkers. It also sends you tips every day, you need to add nuts or avocado to your diet, you need to sleep more. Sleep is very important, that’s a big part of living longer.

There was one post during the poster session that talks about psychological age. The basic point there is that feeling content, feeling happy, having friends, and having meaning and purpose in life can also help.

I keep a list on my cell phone of like 50 things that extend life that are known to be true. Some of them are quirky, for example, having a late-model car that has all the new safety technology on it. Lane changing warnings and blind spot warnings in your car. Many people die from falling, actually, when they get older, so there are things you can do to make sure that you don’t fall. Most people fall in the shower. I heard this brilliant speech one time that Jared Diamond gave in California. He talked about how we spend all this money researching this topic and that topic in healthcare, and most of us are going to die from falling in our shower.



So let’s don’t overlook the easy fixes to extend life, preventing auto accidents, falling in the shower, breaking a hip, things like that. That’s why I said I have this list of 50 things from the research that we gathered that outperforms placebo.

Sounds great. Do you have a take-home message for our readers?

Well, I think that my message for your readers would be that they’re on the right track with advocating for healthy life extension. There’s so many issues these days that you could be an advocate for that you could spend your precious spare time on, but I think that this one is very significant. I feel good about it, this one is my favorite, and I think that it’s something that people can get behind and feel good about. They can share this information with their loved ones. Most people are generally interested in improving their health and living happy, long, full lives, and that’s what we’re talking about here.

About the author

Elena Milova

Elena has been a longevity activist and advocate since 2013, when she first started to organize educational events to make new evidence-based methods of healthy life extension more popular. The last few years have seen Elena leading some successful projects in Russia, aimed at spreading the idea of healthy longevity among decision makers as well as the general public. Several years of lobbying resulted in the inclusion of her propositions in the strategic program documents of the Russian Federation related to the problems of the elderly. She is a co-author of the book “Aging Prevention for All” (in Russian, 2015), where, among other topics, she is sharing how to facilitate the adoption of the healthy lifestyle to promote the period of good health. In 2015, Elena helped to shape and coordinate the successful crowdfunding campaign of the Major Mouse Testing Program – a study of Senolytic drug combinations on mouse lifespan. In 2017 at LEAF, Elena led a successful advocacy project to include the problems of the elderly into the WHO’s 13th Programme of Work . Previously Elena has worked as a project manager in the pharmaceutical and advertisement industries, helping to promote new drugs and therapies. This experience helped her to realize that the existing therapies were not 100% effective and could not completely stop age-related diseases – which has ignited an interest for the development of innovative therapies. Elena graduated with a bachelor’s in both psychology and foreign languages and is now working to earn her MBA at the oldest Russian business school MIRBIS.
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