Regenerative Outcomes Foundation is proud to present the Pioneers of Hope, a series of our founder Doug Oliver’s personal interviews with leading influencers in the Regenerative Medicine movement. These articles are our way of sharing the hope that this field promises to all, from top legislators, great policy minds, researchers, patients, and providers, as well as many others around the world who are molding tomorrow’s discoveries with today’s visions.
Pioneers of Hope will inspire, impassion, and reveal the sentiment, experiences, and motivations that drive these special individuals with unique perspectives reminding us of our common humanity and shared goals for making regenerative health a reality.
A Pioneer of Hope: Susan Collins
U.S. Senator Collins (R-Maine) is a true pioneer of hope. As the founder and co-chair of both the Diabetes Caucus and the Alzheimer’s Task Force in the Senate, she has long been a dedicated champion of cutting-edge medicine. She traces her interest back to two events -- one of which had to do with studying starfish “with an eye to developing technology that someday could help those who had been wounded in war and had lost limbs,” which she says sounds like the stuff of science fiction but isn’t far off.
She told Doug, “Biomedical research is the best investment we can make.” Hearing an influential, devoted senator say that is music to our ears here at The Regenerative Outcomes Foundation. We hope you enjoy the interview!
Doug Oliver: Welcome, Senator Collins, to Pioneers of Hope! It's an interview series we’re offering as a source of insight and inspiration to the world. A look into the lives and motivations of the heroes in positions that have allowed them to have a profound impact on healthcare, specifically Regenerative Medicine. All about celebration. Nothing controversial. Just about hope, right? So, thank you. It’s such a joy to talk with my Maine Senator. I'm a Mainer, you're a Mainer, you spend your time in Washington, and I'm in Tennessee now but---
Senator Susan Collins: I go back and forth between Maine and Washington.
Doug Oliver: These days, I do too. My grandchildren, as you know, also live in Maine. It's like having a little piece of home, even being here in DC.
Senator, this month we're celebrating the first anniversary of the passage of the 21st Century Cures Act, a law that created and funded a national initiative to speed innovation in healthcare using the newest technologies against cancer and other serious diseases. The Cures Act passed with an amazing show of bipartisan support. Now a year has passed, and after hearing the updates from [FDA Commissioner] Dr. Gottlieb and [NIH Director] Dr. Collins, both, on how the bill has been implemented, I'm even more excited to talk about it with you. I'm seeing signs of real impact against the kinds of diseases that I, and so many others, have that have no hope of treatment or cure. Now, just one year later, for some of those diseases, we’re seeing clearly on the horizon the most effective treatments ever, in range. Our hope has become real, and realistic.
I want to talk to you a little bit about that because there is something that many Americans out there may not know. The Cures Act supports quick access to regenerative medicine treatments, like the one I had that restored much of my vision, but that success didn’t come quickly or with a great deal of support. In fact, it began earlier with a bill called the REGROW Act, sponsored by only two Senators. One of them was Senator Mark Kirk, he's from Illinois, right? And what’s not known by most is that the other Senator with the vision to sponsor the bill was you, Susan Collins.
And it was a set of provisions, the regenerative medicine provisions, that were rescued from the REGROW Act when it became clear it wasn’t going to leave committee, that I helped Senator Alexander refashion and get into Cures. People don't know the impact your leadership has had in getting this all started. Just you and one other Senator.
I just want to make that known. So the question is, what did it feel like, one year later as THAT Senator, to be asking for the first update from FDA and NIH, knowing that you had such a meaningful part?
Senator Susan Collins: It's so exciting, and when you listen to Dr. Collins, the head of the NIH, and Dr. Gottlieb, the head of the FDA, talk about the potential, the grants that they've been able to award as a result of the funding that we have provided through the Cures Act and through the appropriations process, and the difference it's already starting to make in--
Doug Oliver: So soon--
Senator Susan Collins: That's what's amazing--
Doug Oliver: That's the amazing part.
Senator Susan Collins: I totally agree.
Doug Oliver: Less than one year and so many marks of progress. What both Drs. Collins and Gottlieb have made happen through their organizations is astounding.
Senator Susan Collins: And it's because the time was ripe for this kind of investment, and the scientific community was raring to go, but they didn't have the direction, the programs, and the money. And that's the difference the Cures Act has made in truly a remarkably short amount of time.
Doug Oliver: But it always takes people like Dr. Gottlieb and Dr. Collins to make that happen in terms of boots on the ground clinically, and Senators like you to make it happen legislatively. I’ve often referred to your work as “legislating a miracle.”
Do you reflect on the hope that your actions helped produce? And if so, what do you hope to hear next year? And what do you think -- we're all going to be patients one day -- what do you think patients will hope for?
Senator Susan Collins: Biomedical research is the best investment we can make. It pays dividends for families all across this country. All of us either have medical problems, will have medical problems, or have loved ones with medical problems. And we are developing cutting-edge therapies, new approaches to looking at horrendous diseases that rob people of their ability to live full lives and to function. And it is so exciting to see the innovation that's coming from the laboratory bench be translated into effective treatments at the bedside. I'm also very proud of the role that the State of Maine is playing in this regard.
Doug Oliver: Maine Medical Center got one of those initial eight innovation grants from NIH, didn't they?
Senator Susan Collins: Absolutely, and I went to tour the Maine Medical Center Research Institute to learn more about what they were doing with their innovation grant. And what they're doing is potentially so incredible for people who now are going through kidney dialysis three times a week.
Doug Oliver: I know it.
Senator Susan Collins: They're actually using stem cells to generate small kidneys, and that has such potential for treating kidney disease. It's just amazing, and I'm very proud that a lot of that work is being done in my state.
Doug Oliver: Where is the hope for you? You just described hope for patients, but can you get a little bit more personal? When you reflect, what are the feelings of hope that emerge within you?
Senator Susan Collins: Well, my family has been heavily afflicted with Alzheimer's disease. My father had it for eight years. And my mother was his caregiver until he moved to the Veterans Home in Caribou. And more than six million Americans are struggling with this disease, but that's an underestimate of the amount, and it's going to explode in future years. So that's an example where there's a special program that's directed at Alzheimer's disease that is included in the Cures Act. And it is our nation's most costly disease, in addition to imposing a devastating burden on families and loved ones. There's nothing worse than looking in the eyes of a loved one and getting only a confused look in response.
Doug Oliver: That has a profound effect on relationships, permanently in many ways.
Senator Susan Collins: That's right. It does.
Senator Susan Collins: So I can see that in my own family. And as I've shared with you, my mother, who's always been very visual in what she does. She's a fabulous painter and does watercolor portraits, and she's always read a lot, and cooked a lot, and she has lost a great deal of her sight due to the combination of macular degeneration and glaucoma. When I hear your story, it gives me hope that someday there would be widely available--
Doug Oliver: Millions and millions of more cases.
Senator Susan Collins: Exactly.
Doug Oliver: I'm a rare case, but the significance is that I am a case, and that I'm not going away. And I'm not going to let people pat patients on the head. Dr. Collins and I have talked about what I see and describe as “patients getting up from the children's table.” It’s a metaphor that fits the status upgrade patients are about to enjoy as a result of the CURES Act. Since we're in a holiday season, it works even better. It helps us understand how important it is to care about who gets to make the decisions. A children’s table... it really has been the way it's been. I think it's different now.
Senator Susan Collins: I agree with you.
Senator Susan Collins: Patients are much more involved.
Doug Oliver: We can read the same medical journals our doctors don't have time to.
Senator Susan Collins: Exactly.
Doug Oliver: Let's figure that one out. Can you tell the story of where the spark came from in your life that made you want to pursue the types of accomplishments in healthcare that you’ve accumulated during your career as a U.S. Senator, and what is it that keeps you going?
Senator Susan Collins: Well, I have always been very interested in medical research. I had an uncle who was a doctor for many years, an internist in Caribou, a graduate of Harvard Medical School, and he also set up a family residency program with Dartmouth to help train family practice doctors for the State of Maine. My family has always been very active in the local hospitals by serving on the board, etc. And I have a niece who is a physician’s assistant. So my family has always been very involved in medical areas, and I personally just always have been very interested in medical research and healthcare. But there are two incidents in particular, and one explains my interest in regenerative medicine, and that was a visit to the MDI Biological Laboratory in Bar Harbor. And this was many years ago, and they were studying regeneration of starfish. And I was fascinated by this, because they were doing it with an eye to developing technology that someday could help those who had been wounded in war and had lost limbs. And being able to regenerate perhaps an arm someday. And it was -- it almost borders on the line of science fiction, and yet it's not.
Doug Oliver: And yet no more.
Senator Susan Collins: And no more. And so that's why I was such an early supporter of the REGROW Act. It was that trip.
Doug Oliver: MDI in Bar Harbor.
Senator Susan Collins: To that lab in Bar Harbor.
Doug Oliver: Are they still there?
Senator Susan Collins: They are indeed.
Doug Oliver: Shouting out to MDI, and the starfish!
Senator Susan Collins: And the starfish. And when I saw what they were doing, and how they were studying it, and they explained the implications.
Doug Oliver: Yeah. They knew about regeneration. They knew about the potential.
Senator Susan Collins: They did. And so that's what really sparked my interest in regenerative medicine. Now, more broadly, I had a very early meeting as a brand new senator in January of 1997 with families who had children with Type 1 diabetes. We used to call it juvenile diabetes. And these children face a lifelong disease, one they will never outgrow.
Doug Oliver: Right.
Senator Susan Collins: And the technology has improved tremendously, with insulin pumps and continuous glucose monitors over the years. But if we could figure out whether we could regenerate islet cells in the pancreas--
Doug Oliver: B cells, or beta cells, yes?
Senator Susan Collins: Yes, that's correct. Then perhaps we could get a cure for juvenile diabetes and save these children from a lifelong disease.
Doug Oliver: That’s one aspect of regenerative medicine… it’s regenerative. The reversal of degenerative. So many of the afflictions we experience are as a result of degeneration, and many times, despite our best efforts, many therapies that prolong and sustain us often degrade our bodies over time, as is the case with type 1 diabetes in children. Not only the disease, but also many long-term therapies do damage to their bodies over time.
Senator Susan Collins: It does. And ultimately, on average, they tend to live 15 years less. And because diabetes, particularly Type 1, affects every system in the body. And plus, how hard it is for a child to have to cope with this disease. That was another--
Doug Oliver: And it’s such an added challenge for parents to keep them safe, often from themselves.
Senator Susan Collins: Definitely. And that was a real pivotal moment for me. And since then, I founded the Diabetes Caucus that very next year, and I'm also the founder of the Alzheimer's Task Force in the Senate. They're both bipartisan, and I think our advocacy has made such a difference in funding.
Doug Oliver: I'm sure it has as well!
One of the most encouraging things I’ve observed this week is the interaction between Dr. Collins and Dr. Gottlieb as they addressed Congress with their first annual reports on the CURES legislation and their agency’s implementation progress. There were smiles, nods, and harmony between their testimonies and stated goals. In private, Dr. Collins confirmed this collaboration is genuine, as is the show of good will. Knowing the agencies are connecting at the top is a vital and satisfying development. What are the possibilities for patients as that relationship continues to gain traction?
Senator Susan Collins: I am greatly encouraged by the strong partnership between NIH and FDA, which can lead to endless possibilities for patients. Every day, researchers at NIH are developing new therapies and platform technologies, from regenerative medicine to cure glaucoma to 3D printing to make medical devices. As scientists make these magnificent strides, a seamless partnership with FDA can ensure that the transition to patients is also seamless.
For example, in some areas the science at NIH is moving so quickly that FDA may not yet have a therapeutic class for the particular treatment in development. Conversations early and often with FDA from the top down can ensure that FDA reacts quickly and prepares adequately for emerging therapies and technologies. Similarly, the work at FDA can inform NIH to target research that would have the greatest public health impact.
Doug Oliver: Senator Collins, on behalf of The Regenerative Outcomes Foundation, its board, its advisors, research advisors, and the patients who will benefit eventually from this program, I'd like to thank you for your leadership over the years, and most especially your recent impact on patients’ lives. You’ve laid the groundwork for so many to pursue new “opportunities for healing” with regenerative medicine… the secret held by a starfish--
Senator Susan Collins: Without a doubt.
Doug Oliver: And thank you so much for being a Pioneer of Hope! Both professionally and personally. You are someone who gets it. You understand we will all be patients one day, and we all need and want this new era of innovation to flourish.
Senator Susan Collins: Thank you so much.