Secretary Donna E. Shalala, Dr. Harold Varmus, Dr. Francis Collins, Dr. Anthony S. Fauci & More: How to Invest in a Healthier Future

Published Apr 7, 2022, 4:00 AM

In existence for over a century, the National Institutes of Health (NIH) is arguably one of the most important agencies of the federal government. Its work is so critical that it often enjoys rare and widespread bipartisan support. In this special bonus episode, President Clinton and nationally recognized experts share first-person accounts and unique perspectives of how the Clinton administration’s unprecedented investment in research and science at NIH led to some of the most impactful scientific breakthroughs in the last century – including developing antiretroviral treatments for HIV/AIDS, accelerating research which ultimately made it possible to develop COVID-19 vaccines, and the sequencing of the human genome.

This episode features talks by:

  • President Bill Clinton, 42nd President of the United States, Founder and Board Chair, Clinton Foundation 
  • Dr. Donna E. Shalala, Secretary of Health and Human Services in the Clinton Administration
  • Dr. Anthony S. Fauci, Director of the National Institute of Allergy and Infectious Diseases at the NIH
  • Dr. John I. Gallin, NIH Associate Director for Clinical Research who served as the inaugural chief scientific officer of the NIH Clinical Center
  • Dr. Gary Nabel, President & CEO of ModeX Therapeutics and the first director of the NIH Dale and Betty Bumpers Vaccine Research Center
  • Dr. Harold Varmus, the Lewis Thomas University Professor of Medicine at Meyer Cancer Center of Weill Cornell Medicine, former Director of NIH, and Nobel Prize winning scientist
  • Dr. Wendy Chung, Director of Clinical Genetics at Columbia University
  • Dr. Francis Collins, longstanding former NIH Director and Director of the National Human Genome Research Institute
  • Dr. Charles Rotimi, Director of the Trans-NIH Center for Research on Genomics and Global Health

This podcast was adapted from an event held in partnership with the Clinton Presidential Center and the University of Arkansas Clinton School of Public Service as part of the Kumpuris Distinguished Lecture Series. To learn more, visit www.clintonpresidentialcenter.org

Today, we're glad to bring you a special episode of Why Am I telling You This. We'll be doing these episodes periodically to introduce you to some of the inspiring people in important ideas I've encountered throughout my career in public service and at the Clinton Foundation. On this episode, we're sharing a recent program hosted by the Foundation and the University of Arkansas Clinton School of Public Service, which focused on the research that took place at the National Institutes of Health when I was president, including developing antiretroviral treatments for HIV AIDS, laying the groundwork on vaccine research, both of which made it possible to develop COVID nineteen vaccines more quickly, and completing the mapping of the human genome at least the first draft. It was perhaps one of the most important and farthest reaching achievements of my eight years in office. I hope you'll find these conversations as fascinating as I did, and that you come away with a greater understanding why investing in science is one of the best things we can do to build a healthier, better, more equitable future for everyone. I want to thank all of you who are responsible for the Comparist Lecture series, especially Dean Comparis, do Comparis, Katherine and Trotter for endowing the series and their parents names. Frank Comparis was one of the most respected doctors in our native state. He and his wonderful wife Cooler, raised the great family and made the world a better place. So to the panelists, I can't thank you enough for doing this. Uh. Thank you to Donna Laila and I think still is the longest serving Secretary of Health and Human Services ever. She managed to fit that in between being president of Hunter called Ledge and Chancellor of the University of Wisconsin at Madison, and than her long tenure at the University of Miami, where she now teaches. And she did a stint as the most overqualified member of the United States House of Representatives. Thank you Harold Arms for all the work you did when I was president. Thank you Francis Collins for many things, but overseeing the international effort to sequence the human genome and in the process brokering of peace with Craig Vennor and the private sector effort to turn a race into a relay. Thank you Tony Fauci. I'm amazed you're still standing after all you've been through these last two years, and I was always grateful to you for your hard work, and never more grateful than to see you trying to talk common sense in the middle of nonsense. Thank you, John Gallen, thank you Gary Nabel, thank you Dr Wendy Chung and Charles Himy. I'm grateful to all of you. The n i H is a national treasure, and it had received even in the polarized times in which I governed, we had an astonishingly broad base of bipartisan support at the National Institute of Health. I came into office when we were entering the information age. The whole revolution in part made possible the sequencing of the human genome, which obviously required massive digital capabilities. There's always been attention in every budget season, and we saw it with Present Biden's recent budget, between the present and the future, always attention between what is too little and what is nowhere near enough to sleep comfortably at night. I'm very glad that we could double the budget of the NIH almost and more than up all the budget of the Human Genome Project. I think that it's clear that the work that was done helped to speed the development of antiretrovirals for HIV AIDS, did important work in vaccine research, and established the Vaccine Center, which I think hassendurability to develop the COVID vaccine, especially with the completion of mapping the human genome. I spent three billion dollars of the American taxpayers money on that, and we had the first rough draft in two thousand and I tell everybody that it's the best three billion dollars I ever spent in my life. We had a return on investment of something like three hundred four hundred to one already and an incalculable impact on the future prospects of life. Let me say one more thing before our panel starts. One of the reasons the nih accomplished as much as it did is that so many people with extraordinary talent and at a cation chose to work there and at the Department of Health and Human Services and in the White House, all pulling in the same direction. Most of them could have made more money doing something else, but none of them could make a bigger difference doing something else. So all of you are, by definition difference makers. We were talking before the program started about our friend Madeline Albright and the last conversation I had with her, I sort of began by asking about her health. Her voice was strong, her mind was clear. She said, Look, I'm not well, but I've got a good doctor and I'm doing what I'm supposed to do. And the leather worker it won't. Let's don't waste time on that. The only important thing is what kind of world are we going to leave to our grandchildren? And we proceeded to talk about that every day. Every step of progress you make, every blind alley you run into and then turn around and try something else, helps us in ways that are not always clear, to keep going forward and to keep proving that. In the end, the most important discovery of the Human Genome project is that all non age related differences we can see among human beings are rooted in less than half of one percent of our genome. And sadly, the world gets in trouble when we major in the minors and only talk about that half a percent. We spend nine and nine and a half or some of our time fixated on our differences, and when we're in a foul humor, we completely forget about the other nine and nine and a half. For some of us, that is the same by using your different abilities, by making your diversity of intellect, imagination and effort of virtue. Yeah, you reaffirm the fundamental sanctity of life in all of humanity. I'm very grateful and I can't wait to see what you have to say. Thank you very much, Thank you us the President for those remarks. As we transition to our first panel, let me introduce Secretary Donahalella, who before becoming Secretary of JHS, served as a chancellor of the University Wisconsin, one of the nation's top research institutions. Donna, thank you very much, Kevin UH, and thank you, Mr President. I've always believed that the President's most important legacy was his commitment to science, to the NIH in particular. There will be lots of references, and he made one of them to bipartisan efforts UH to successfully double almost double the NIH budget, which unleashed golden age of biomedical research. But for me, it was not just the doubling, but what the leadership did with that money. Um. First, second, Um, it was really the leadership we recruited and those we retained, and the impact of of training grants on preparing a new generation of of scientists. Today, we're going to hear from some of those leaders, and I'll introduce the four for my panel, starting with Dr Harold Varmus. Dr Varmus, of course, won the Nobel Prize with his colleague Mike Bishop in nineteen eighty nine, the Nobel Prize in Physiology or Medicine. He was director of the n i H from to nine nine, and he came back to lead the n c I from two thousand and ten to two thousand and fifteen. Dr Tony Fauci, Director of the National Institute of Elogy and Infectious Diseases and now the Chief Medical adviser as well to President Biden and of course our leader during the Clinton administration in an extraordinary effort UM against AIDS. Dr John Gallen, director of the NIH Clinical Center. Actually from to two thousand and seventeen twenty two years, John Gallen led the criticals UH the very critical Clinical Center UM named for for Dale bumpers Um. Currently he's the chief Scientific Officer for the Clinical Center and Associate Director for Clinical Research at NIH. And Dr Gary Nable Um, who was recruited to build a vaccine research program for the country, and I really made a mistake that's named after. The Vexie Research Center is named Actor uh Dale bumper Um. He was the founding director of the Vaccine Research Center at ni AI D and uh pioneered a renaissance in vaccine development and will hear from Gary about how that was the underpinning for the vaccines of the future. He's currently at Modex Therapeutics as the President and Chief Executive Officer, uh Dr Varmus. This is all yours, Thank you very much. The NIH has been in existence for over a century. It's a federation of today seven institutes and centers, each of which m received their direct appropriations. The budget for the NIH today is about forty three billion. When the Clinton administration started it was a little under eleven billion, increased steadily and then initiated a five year doubling process. Then h is a health related science agency. Doesn't do any direct healthcare. It provides basic and clinical research opportunities, training, and infrastructure to the nation's medical research establishment. About ten percent of the research that is done by the NIH is done by government scientists, mainly on the campus in Bethesda. The rest done through grants and contracts to institutions and medical schools and universities UH in all states and some abroad UH and these grants and contracts are issued importantly through competitive peer review. Like all agencies, NIH has annual appropriation. But it's important to note that the NIH does its research through multi year grants and contracts and works on very long term problems, which means that support from the administration to keep its budget strong is incredibly important. We've had support of the NIH from both sides of the aisle for many years, and in general we have a good working relationship with both the executive and these legislative branches. UM. There are two ways in which the executive branch, especially the White House, provides comfort and support to the ni H during an administration. First is the support for that long term, ongoing work that supports the biggest medical research enterprise in the world. And you're gonna hear about how things came to fruition during the Clinton administration and the treatment of HIV and AIDS UH and, but there are many other examples that we could have been illustrating on in advances in cancer treatments and the improved outcomes of cardiovascular disease and stroke, and and many other things. But they're also shorter term needs, health crises, construction projects, starts to new programs, expansions of others like the Genome Project. Will talk about in some detail in a moment. From my perspective as the annied director during most of the Clinton administration and as a scientist who's dependent on ni H all the time from my own work, I look back on the Clinton years as the golden years and medical research for many reasons. First, we had the enthusiasm of not just the president, but the President's family. Indeed, the first member of the family to come visit us was was was the first lady who came to the NIH for a day long tutorial about genetic research and virology. Uh and she then uh brought the President out for his Saturday tutorial just after giving a radio address about the Family Leave Act. Uh and uh he heard about research going on in AIDS and genomics and cancer research, and that persuaded the first daughter to turn up and spend several days working in one of the lab run by one of our outstanding female scientists. We still have vials that are labeled C C one, C C two, C C three for mutants of a bacterial proteas that she isolated. UM. The second reason is that the strength of the budget proposals. The President said to me many times, I'm not I'm not proposing everything I want you to have, but I know the Congress is gonna double your increase even even when Republicans are in charge. And uh. He followed that prescription for many years and helped us start the five year doublings had the effects that Secretary she Leila just mentioned. A third aspect of his support was the quality and attitude of our partners in the US government during during the administration that I've served in. Other members of the panel who haven't been introduced to you will illustrate some of the things that remained incredibly important to the dire scientific enterprise. The first is how long term science pays off. And you're gonna hear from Tony Faucci about UM, who has been director of the Allergy and Infectious Disease Institute for almost forty years, about how long term investments in the studies of infectious agents, including HIV have led led to culminations of those efforts during the Clinton years, with our ability to prevent transmission of HIV from mothers to infants, the development of protease inhibitors, and development of highly effective therapies against AIDS. When the clint administration began the the program that was run by government scientists and Bethesda was under some criticism and a report from outside scientists arguing that one thing we needed to do was revitalized clinical research at the clinical center in the n I t intramural program led to recommendation that was given due UM scrutiny by Office of Office and the Office of Management and Budget UH and UM UH and he'll tell us about the planning of the new clinical research center named from Mark Hatfield UM and the new the many new things that have been done there. And then you'll hear from Gary Nabel about how he managed as the first director of the Vaccine Research Center, which is a direct outcome of President Clinton's involvement in a research UH. The then head of the Office of of of a Research, Bill Paul unfortunately deceased a couple of years ago. UH led to UM proposal we put together a vaccine research center on campus, and one day the President and Al Gore had me and Tony Faucci come down and chat with him about what needed to be done in AIDS research, and he immediately bought onto this idea of building a vaccine research center and made that part of an address he gave shortly thereafter Morgan State, and that persuaded Congress to proceed with the investment that, as you'll hear, is paid off in many ways. So let's turn this over now to members of other members of the panel, starting with Professor Fauci. I just went through my mind the other day, um, almost on a year by year basis, the extraordinary advances that we experience, literally from the day you set foot into the White House. You remember, one of the first things that you did was to establish the White House Office of National Aids Policy or a NAP, which actually is still today exerting an important function. We never had that before you came into the White House. And then though, it was also at a time when the toll of morbidity mortality was accelerating in the country and by nine four AIDS became the leading cause of death of all Americans age four. But then things started to turn around with regard to therapy. You'll remember the famous A C T G O seven six results. The first time that we showed that you could actually interfere with the transmission of HIV from a pregnant mother to the baby. That has to be one of the true hallmarks of iconic studies done at the n H under your leadership as president the years that really was so exciting, all eight of them, But there was a cluster of a few in the middle that, from my standpoint, was transforming from and that's when we went from one and then two and then three drugs in combination, culminated by the first time of the use of protease inhibitors, which was the third drug in the three drug combination. What happened then was something that I have to tell you without hyperbole. Every time I reflect back on that, I still get little bits of goose bumps because I had been taking care of persons with HIV for those years, from right up until the time when that combination proved to be completely transforming and turning around the lives of persons with HIV and the summer Vancouver International AIDS Conference, those results were presented and it shook the world in a very positive way because from that time onward, the idea of hospices was a thing of the past. For persons with HIV. I have a photograph that I show at many meetings of Harold and and you and I and Vice President Gore and Bill Paul in the Oval office. I was presenting to you a schematic of a brand new UM discovery of a co receptor called c c R five for HIV. You've got very wonky because you really wanted to know the details of what that receptor was. But at the end of the scientific discussion you brought up with Harold had mentioned, you said, by the way, Tony, it's December, the three UM. It's we had HIV since and the virus was discovered in eighty four. Why don't we have a vaccine? And that's when we got into the discussion of the possibility of having a vaccine research Senate, and you said you would do something about it. I thought you were just trying to be nice to us, But to our great surprise, in May, you announced at a commencement address at Morgan State that you actually were going to support the building of a vaccine research center at ni H. But the years went on and things actually got better and better. One of the things you did do that led to the success in a subsequent administration of the pep FOP program. But even as you were president, you issued an executive order to assist developing countries in importing and producing generic HIV treatments so that they could have available to them treatments that were costing tens of thousands of dollars here and importantly, when you left the presidency, through the Clinton Foundation, you continued that pushing to have the availability of drugs to people in the lower middle income countries. So it was an extoy, very run and I'm so proud to have been a part of it with you. We'll be right back. The NIH Clinical Center opened in n Since it's opening, incredible teams of basic and clinical scientists in close partnership with very courageous patients, often in the scariest moments in their lives, resulted in an outstanding history of accomplishment improving health care for the nation and the world. A few examples of early accomplishments at the Clinical Center include chemotherapy for cancer, cure for childhood leukemia, lithium for depression, fluoride to prevent teeth decay, identification of high cholesterol as a risk factor for heart disease, first three treatments of AIDS and the discover if hepatitis viruses B and C that caused cirrhosis and liver cancer that eventually led to a vaccine for hepatitis B and tools to protect the blood supply from and to treat hepatitis C. Dr Barup Bloomberg received the Nobel Prize in nineteen seventies six for discovery of hepatitis B, and Dr Harvey Alter from the clinical center, in partnership with doctors Michael Houghton and Charles Rice, shared the Nobel Prize in for co discovery of hepatitis C. Forty years after the clinical center opened, the hospital infrastructure was barely able to sustain modern clinical care and science, and the clinical center came under scrutiny. In a report on the NIH Intramural Program to the NIH, Director Harold Varmes, by committee co chaired by doctor's Gail Castle and Paul marks Wreck commended for the first time a new clinical center be reconstructed as promptly as possible. The same year, Vice President Gore's Reinventing Government to initiatives said that the clinical center should be critically reviewed and re engineered to improve its effectiveness and efficiency. In response to these recommendations, the Department of Health and Human Services Secretary Donna Shoela convene a team coordinated by Dr Helen Smitz to conduct a review. The review reiterated the earlier recommendations to build a new clinical center. As a result, with the support of the Clinton administration and the Congress, plans to construct a new clinical center were initiated. Key events in moving the process forward included President Clinton visiting the clinical center in August. On September, Congress approved funding of the new hospital, to be named the Marco Hatfield Clinical Research Center. Construction began in January nine and was completed in August two thousand and four, and on September twenty two, two thousand and four, at a ribbon cutting ceremony, a patient speaker, the late Susan Butler, called the clinical center the House of Hope, highlighting what the clinical center means to patients and to the public. The opening of the new Marco Hatfield Clinical Research Center enabled the continuation of great accomplishments that continued to improve the health of the nation. These include cell based immunotherapy for cancer, new treatments for kidney cancer, a new drug for depression ketamine, first in human studies with the Ebola and cove and vaccines. Discovery of a new category of diseases, auto inflammatory diseases and new drugs to treat them. Gene therapy for several rare diseases, including sickle cell disease, and creation of the Undiagnosed Diseases Program, where patients from across the nation with unexplained medical problems are brought to the Clinical Center for evaluation and advice for treatment. In two thousand and eleven, the Clinical Center received the Mary Woodward Laska Bloomberg Award for Public Service for serving since its inception as a model research hospital, providing innovative therapy and high quality patient care, treating rare and severe diseases, and producing outstanding physicians scientists whose collective work has set a standard of excellence in biomedical research. John thanks very much for that really terrific summary of not of not just the clinical Center itself, but espressing the importance of clinical research. It gets more important every day is basic science produces more products that need to be properly tested and evaluated. In the context of what is the world's largest research hospital in the world. UM, we're gonna turn now to Gary Nable to say more about a topic that has already been introduced by a few of us that nambly the Vaccine Research Center. Gary. Welcome, Thanks, Harold. President Clinton. Is really an honor and a pleasure to join you today along with the powerhouse team that you would put together at the time that I came to NI Secretary of Lela Harold, Tony John, It's great to be reconnected on this occasion. You know, when we think back now to the age crisis, as Tony outlined, UH, as our memory these UH fade, we we sometimes forget the unimaginable toll that that crisis took on human life. Not only the toll on human life, but the quality of life for victims and families, as well as the profound effects economically and politically throughout the world. More than thirty nine million people have died in the epidemic so far, more than five times the numbers that we've faced with COVID so far, and despite the gravity of the global health threat and significant investments in the science at the time. By the late nineties, despite the pronouncement from Margaret Heckler and the Reagan administration that we have a vaccine in a few months. Back in the early eighties, the vaccine remained elusive, and yet it remained the best way to prevent and contain the epidemic. Now, the reason for it, obviously is the biology of HIV. This as an insidious virus and it posed an unprecedented scientific challenge for vaccine development. And the reason for that is because it had such enormous genetic diversity, and it also had the ability to camouflage many of its important viral entry proteins. There are more variants of HIV and a single person infected with the virus then there is in the entire planet and the whole population of the world during a single year of an epidemic like COVID or flu. So compared to licensed vaccines where there may be three to ten components that much as at most, this complexity poses a really daunting challenge, one that thwarted the best and the brightest of scientists working in individual labs around the world. So it was really in this context that Harold and Tony and Bill Paul, with support from Secretary Shilela, approached you uh and and where you all decided that the best thing to do is to develop a dedicated vaccine research center to be built in NIH to overcome the scientific, technical, and early development challenges facing HIV, UH and other emerging global health threats. The room where it happened was the Oval Office of the White House, and I think it's important to note that this group that met there really served as a brain trust that not only started the process, but importantly remained involved and nurtured its growth. The Vaccine Research Center was an innovative model for the support of scientific research in three ways. First, it provided a physical place, a physical laboratory whereby you could bring the best and the brightest scientists together in one research center UH and where they could work in a multidisciplinary way to approach the problem because vaccine development is is highly complex and involves many different UH types of approaches. Secondly, it was it was a mission driven research organization. We came to work each day knowing that a day saved and bringing a vaccine to the world saved six thousand lines. Those efforts extended not only to HIV, but also as we worked at the NIH to other emerging health threats. The first stars at break Avian, flew Ebola, Chicken, Gunja, Zeka and now covid UH. And finally, it was a place where we could actually make clinical products and conduct human trials. And so it allowed us to operate independent of the constraints by the vaccine industry and undertaking vaccine development. And it's important to recognize that in large part many of these vaccines are not developed because there's a a failure of the private markets to address global health challenges. So it's an important model for public private partnerships. The center has succeeded in a number of ways. More than a hundred clinical trials have been performed, Connections to industry have been made to make new vaccines accessible to the public. Perhaps the most tangible recent success has been its catalytic role in accelerating the development of the covid MR and a vaccine. The VRC worked quickly internally and with industry to advance prototypes and to identify structure based mutations that frees the virus in a form, freezes the virus in a form that optimizes vaccine protection and gives us some of that protection that we're now seeing across diver restraints. And finally, at least from my perspective, the Vaccine Research Center is a gift that keeps on giving. The VRC has multiple productive collaborations with academic and biotech UH and pharma labs. There's now a diaspora of VRC scientists who have taken the training that they've received there in the spirit of the institution, to new places where their work contributes to the preservation of continued preservation of global health. UH. COVID vaccines have likely saved tens, if not hundreds of millions of lives, and the VRC contributed in a foundational way to its development. While progress continues to this day on HIV, BOLO, chicking, GUNYAH, and universal flu For me personally, it was an unparalleled and special opportunity to show how science and data can impact human well being and save lives. To President Clinton, Secretary Lela Harold Tony, your leadership and wisdom has achieved significant goals, and I'm confident there's more to come, so stay tuned. The work continues, and finally, I very much appreciate the opportunity to help build the center and to serve. Given the pressure everybody was under, you could have just made the vaccine center very narrowly focused on HIV AIDS, but it seems to me that the decision to make it a vaccine center to cover more than just AIDS was absolutely critical for the future. That is really an important issue. It became very clear to me and to Gary who is the director at the time, that the talent that we had accumulated in the senior people and then their junior colleagues and acolytes was such that although we put a full blown effort on HIV, particularly some of the things that Gary mentioned, the structural biology capability, the idea of of structure based imaagen design, it became very apparent to us Donna, that that was applicable to r s V, that was applicable to any of a number of viruses. That we did not want to constrain ourselves just to studying HIV, so we went into flu. You know, we did coronaviruses with the first saws Kovie one and then Mayors and then the particular interest that Bonnie Graham had in respiratory since sechel virus, which was his love before he even came there, actually ultimately partnered with Peter Kwang to develop the image design that led to the coronaviruses. So it was just a beautiful symphony of people who were playing together, and it became very clear that it would go well beyond HIV, which it has. I'm not gonna make one footnote to that comment. At Tony UM back in the very first days of the Clinton administration, when things were not going very well in in the development of treatments and protections against AIDS, we had commissioned an outside group headed by a distinguished virologist, Arnie Levine, to evaluate the AIDS program, and one of the recommendations was that that the the development of immunology as a as a as a discipline was not being sufficiently applied yet to the study of HIV and U and then Bill Paul, who had been director of the Office of AIDS Research, noted that we had tremendous strength and immunology ranging from people like you donate to many others on campus who could make a contribution to development of of UH vaccine research. And people on the campus began to gather and the next thing we knew, we had a proposal for a vaccine WIS Center. And I'm very grateful to the President for saying this is not just going to be an HIV center. It was going to be a center for for vaccine production and it's proven to be incredibly valuable. Along the lines that you said, many people think that that ni H is organized into silos, and it seems to be the vaccine research center, the clinical center of two examples where the entire um community of NIH came together. John, you would not have been successful if everybody hadn't bought in absolutely all the seventeen centers and institutes that the intrameral program used the hospital and they all interact very closely. That's great. I think President Clinton wanted to make a command here. Mr President, this was fascinating hearing this from your perspective. I wanted to, uh say to me, you might have ace that if we want to continue this, we have to give get broad based support, and I'll give you both within the Congress and in the larger country. In the Congress. Herald, I've always given you credit for this. I don't know if you deserve it, but if you don't give it somebody else. But you know, we got waxed in the ninety four presidential election because I tried and failed to get healthcare reform, allowing the history of it to be rewritten. And because I tried and succeeded in getting the assault weapons ban, the ten lad ammunition clip limit, and and the Brady Bill passed. But I talked to new Gearbridge one day and he had a hundred members of his new majority who didn't didn't have a passport, and we're proud of it. And thought, government, would you know, mess up a two car parade? And the purpose us to have less of it? And Uh, I knew he was interested in science because he had given me a copy of E. O. Wilson's book on ants. So I said the new well, we gotta we gotta get these people on the research band wagon. You need to take him to m I N I H. But when they got there, these people who thought the government was some sort of amorphous evil blob. Whoever was responsible for the tour of these freshman congressmen took started them in a hospital bed, and they lay in a bed and looked at the films, UH saying what all the ni H was doing on the TV in the hospital room. And it was an elemental political observation, which is that everyone wants to go to heaven this morning, but nobody wants to die. We all would live as long as we can. And it was really and all of a sudden, we had no problems getting the Republicans to vote for the NAG budget. We had a couple of years where the Christian evangelical community leaders basically were involved in mainstream politics, talking to everybody. UH. I brought them in in two thousand on the Millennial Debt Relief initiative, and was had worked with a couple of them who were friends of mine, and they all supported relieving the debt of the world's poorest countries if they put the savings in the health care or education or development. And the President Bush later institutionalized this, but they weren't quite ready on age yet, you know, they weren't quite fast. All we just got to talk about profession and accidence and nothing else. But by the time he got to the point where he had the votes in Congress because of their support to pass the pep far program, which I loved. You know, we we tripled overseas aids UH assistance when I was president, and we were giving on what the world was giving, but it was peanuts nothing. And so after he did that, I want to give him credit for something else that a lot of people don't know. Uh. In the beginning, they were only working I think in seven or eight countries because they were requiring pep far to purchase for these countries UH medicine that big farmer was making, and they'd give him a discount, but it was like a hundred and fifty uh D dollars a year, which was less than a ten thousand or so we were playing in Harlem, but way more than a hundred and fifty or so. We were already down to with the products the prices we had negotiated through the Clinton Health Access initiative. So I was flying with the President Bush to the Pope's funeral and flying home, and he said, talk to me about what you're doing on AIDS, and so I did, and I said, you know, you ought not to make these countries by generic drugs, but you ought to give them the option to take the money you give them and spend it on generics that they want. And he said, well, I'm told that they're not as effective. I said, I know they tell you that, and I know they're important to you politically, but it's not true. I said, what if I were to submit to the f d A every single drug we put in any human body in any country for review and approval if they get approved with you okay, the money, he said, it sounds like a fair deal to me. It was just the two of us talking. He didn't have no lobby, has had a chance of talking about of it. He just aired about where the poor people were going to live or die, and I could tell he really cared. And uh so we submitted twenty two, as I remember, twenty two different products, and nineteen were immediately approved by the FDA. And he didn't slow walking, he didn't do any He played it totally straight. They just reviewed them and approved them, and all of a sudden, PET four was in more than twice as many countries, treating a hugely greater number because he did that, and he had the support of the Christian evangelical community. So that's a good Both those examples show you why we need to keep working to build broad based support for the work of the nih UH and our common humanity can sometimes be found when we're sick or someone we love has something wrong with them, and even when it's not available anywhere else. So and thank you and Harold, I've always giving you credit for putting those congressmen in the hospital. Man More after this, we're going to continue the conversation meant very much in the same vein of talking about how UM science proceeds, how it works, how presidential support really helps, especially when it comes to getting increased allocations of funds for an important project and getting the the confirmation of that significance by having the president himself speak out on the importance of genetics. And indeed we've just heard uh, just a few moments ago UM President Clinton reminiscing about the importance of learning how much of our generic genetic heritage is held in common among people who UH seem to thrive on on strife, as opposed to recognizing the pot nine percent some identity in one genome one genome to the next. Before we launch into this more detailed discussion of the human genome project, I want to issue was very brief reminder that genomeics, like everything else, is built on prior work and work of the NIH and other organizations around the world for twenty or thirty even forty years to develop the tools of molecular biology and genetics. Was fundamental to being able to put ourselves in the position of imagining UH, the sequencing of a complete genome, and indeed even the idea of doing a complete analysis of the genome was dependent upon the development of technologies that that many people around the world we're working on having a specific proposal, initially from a revered cancer searcher We're not on tobacco and Nobel Prize winner who made the what seemed initially to be an outrageous proposal that we do something as as outrageous as UH, looking at every nucleotide of the three billion pairs of nucleotides in the human genome um. And then the vetting by the National Academy of Sciences, first steps being taken by the Department of Energy at Los Alamos, the establishment of an office in an i H in a prior administration, then the recruitment by Donna show L and Bernardine Healy, my predecessor as director of n i H of Francis Collins, from whom you'll hear just a moment and just a moment. UH. That all set the stage for this remarkable acceleration of work on the genome project that that went on over the next several years, leading to the culmination of the work in the around around the year two thousand UH. And you're gonna hear from three people about the importance of all this. First from Francis himself, who was the prime leader of the program during the Clinton years as director of the Human Genome Resurgence Institute UH. And then and how he worked with other agencies the top Armament of Energy, for example, and international partners including the Welcome Trust and and the UK and many others and in a large number of countries who participated in this remarkable global effort. And then you're gonna hear about applications of the Human Genome Project from two UH individuals who were not engaged directly in the Clinton administration, but in some sense have through their work fulfilled the the ambitions of the Clinton administration in his effort to accelerate the Human Genome Project. First from Wendy Chung, who's the director of Clinical Genetics at Columbia UH, talking about how the Genome Project has influenced her attends to diagnose UH, particularly inborn diseases that involve changes in our genes, and how those patients are cared for. And then you'll hear from Charles Rotimi, who is currently the director of the trans NIDE Center for Research on Genomics and Genomic Health, Genomics and global health through the use of genomics and international work in that in that regard, So Francis, if you would spend some minutes telling us about the experience you had in the Clinton administration accelerating the genome project, then we'll turn it over to the other two speakers. Well, i'd be glad to and thank you Harold, Mr President Secretary Shlela Dear colleagues and friends. It is a privilege to be part of this event with people I admire so much. Yeah, I'm walking back the memory lane here to the fall of I had been hired by Bernardine Healy to come and lead the human Genome project at a time where, let's be clear, it was a little uncertain about whether this was gonna work, and a fair percentage of the scientific community was not at all supportive, thinking that this was just going to be a boondoggle. And then there was an election and people began to say to me, did you realize that you were hired by the previous administration and maybe you ought to be a little careful about whether you really have a job. Well, I need not have worried, because I got a call I don't know if it was the day after the election or the day after that from Donna Chola saying, never fear, we really believe in the Clinton administration about this project. I'm going to be your secretary and I will make sure that this project gets the attention it deserves. So I decided that was right and gave up my professorship in Michigan and moved into the old nurses Dorm on the NIH campus. We're together with a very plentiful abundance of cockroaches. I began to learn how the government actually operates, and was happily joined a few months later by Harold, who lived in another part, met down the hall in the old nurses Dorm with Connie, his spouse. The good part of that was we did a lot of strategizing at night over red wine about what exactly could be done here as we began to bring molecular biology and genomics forward at the NIH in a way that showed such promise, and we knew we had wonderful leadership with Donna, and we've learned just how enthusiastic the President was about genomics when he visited US on a Saturday and had the experience of hearing his questions, showing him how to dissect a human chromosome, and recognizing that we had a dream team to support NIH and to support the genome project. And that was good because, of course, the general project began with a budget that was essentially zero before it got started, and it had to ramp up, and it had to ramp up faster than the rest of NIH or it couldn't possibly do its job inventing all these technologies and also figuring out how to actually do sequencing at scale. Something like a thousand base pairs a second was what we had to get to, and when we started out, we were lucky to do with thousand base pairs in a day. It began to pick up speed. UH Secretary Slela decided in seven that the National Center for Human Genome Research could be upgraded to an institute as it now is today. Thank you Donna for that. And it was international from the start, and that was a big part of what it made possible to go at this pace with partners in six countries and twenty labs, all agreeing to work at the same set of guidelines and standards for excellence and accuracy of the data, and a very important decision made about that time that this data ought to be in the public domain. This not this should not be something as our shared inheritance that anybody owned, and so we began putting that sequence into the public domain every twenty four hours. President Clinton strongly agreed with that. There were other entities that were claiming bits and pieces of the genome and trying to file intellectual property and sometimes getting it on those and so um. In the spring of two thousand, President Clinton and Tony Blair put out a statement saying it would be a good thing for the genome sequence that belongs to all of us to be accessible to everybody. Well, Joe low Lockhart in his press briefing that morning, didn't quite get it right, and I think he said something like, well, Jane Pattons aren't going to be allowed anymore. And the stock market crashed, which was a little embarrassing. But fortunately it all got cleared up fairly quickly, and it was a deep dip that was then retrieved and brought back into the better place. Although I think some people in biotechnology were a little shaken up by it. Well about that time, we had this race that the President was referring to with a private sector effort called Salera led by Craig Ventor. It was getting a bit unseemly both the public project in the private project. We're making progress. Um I asked Ari Petrinos, who was running the Department of Energies effort in genomics, to convene Craig and me for pizza and his basement. And many essays and articles have been written about that pizza party, and there was more than one and the result of that a memorable day, Mr Presidents June two thousand, Eastroom of the White House, with the scientific community and the world kind of gathered to see what this was as we announced a not complete yet but a very good draft about nine of the Genome. It was the milestone that many people have been waiting for. Mr President. You referred to the map that Meriwether Lewis had presented to Thomas Jefferson in that same room. Well, that was pretty interesting as a parallel, and I went back and read your remarks. You called the genome the most important, most wondrous map ever produced. By humankind, and it was the language in which God aided life. And you emphasized how all humans, regardless of race, yes, are more than the same. And we all knew that you were quite attached to that, having noted how you had lectured the Serbs and the Croats and Kosovo that they really shouldn't be fighting with each other because their genomes were so similar. I'm never quite sure how that played out, but I thought it was a wonderful way to put forward some science at a difficult time. And that was such a moment. And we got to the end of the speeches and you closed with this ad lib and for some reason, they're just stuck in my mind, so I thought I would read it again. You said, when we get this all worked out, and we're all living to be a hundred and fifty, young people will still fall in love. Old people will still fight about things that should have been resolved fifty years earlier. We will on occasion do stupid things, and we will all see the unbelievable capacity of humanity to be noble. This is a great day. It was a great day, Mr President. We crossed into New Territory that day, but just before finishing, I'd say, there's another day that I'll remember. About six months later, there was a farewell in the Indian Treaty Room for the President and the First Lady. Interestingly, right now my office in the E. E E O B is right down the hall from the Indian Treaty Room. As I'm now serving as the acting Science Advisor to President Biden. I got an invitation to this farewell to the President, the First Lady and from Chris Jennings, and I thought I have to bring something, and the timing was just right. I brought the first CD that contained the human genome sequence on something you could hold in your hand, and I made a brief presentation. We were finishing the Nature paper that described this, which would have gotten published about a month later. And in that paper, which I had a lot of time devoted to trying to say something that was maybe even a little poetic, it ended with T. S. Elliott's famous words from Little Getting, we shall not cease from exploration, and the end of all of our exploring will be to where will be, to arrive where we started. And then the First Lady finished the quote for me and know the place for the first time. Yes, we know the place. It's a textbook of medicine, it's a parts list, and it's a record of our history. Genomics has expanded beyond anyone's dreams and expectations since then. The Human Genome Project took thirteen years and three billion dollars. Now your genome can be sequenced in a day for less than a thousand. Applications to cancer, birth defects, drug discovery, gene therapy, infectious disease including COVID have massively extended our reach in science and medicine, and there is much more to come. And for that, I turned to the next two speakers, beginning with Dr Wendy Joe, thank you. I'm so privileged to be here prisoning Clinton. UM. As I was listening to speakers today, I would say I'm actually a product of much of what they spoke about. I actually began my career scientifically as a student at the NIH Clinical Center and in I h S. When was inspired to become a genome scientist. I started out my training literally the year the Human Genome projects started. And realize this, Dr Collins said, if worst putting that much money into this, there's going to be amazing things that we're going to be able to do, and was able to start dreaming about the day when we would be able to actually sequence our genome within a day. Just to give you a sense of where we are as I look back of those twenty thousand genes that we now know of, there are remarkable seven thousand of those that we can now associate with a very specific human disease. And in fact, these conditions are quite common. Individually, many of them are rare, I'll grant you that, but collectively, if we look at many of these men Delian conditions, ten percent of us actually have or will have manifestations of these conditions. And I is still a practicing physicians see a lot of these patients that are at risk, for instance, for hereditary breast or a varying cancer. But they're able now today to be able to walk a different path than their mothers walked, or for those at risk for calling cancer, to walk a different path than their fathers have walked. They're able to see that there are at risk and they're able to do something about it. They're able to take that into their hands and not let that be their destiny. They're able to really rewrite by seeing what's ahead, and to be able to take very conscious and deliberate actions, sometimes very brave, but to be able to lead a different life and to be lead able to lead a healthier life. They really they're inspiring. They are incredible in terms of what they personally do with this information. But there's so much more that's yet to come. It's been remarkable for me to be able to see that technologically we can read out those three billion base pairers. We can do it for less than a thousand dollars, but we had to overcome other hurdles. Sometimes this has been referenced, even legal hurdles to be able to take down gene patents, to be able to have the ability to know that information content, and to be able to use that to take care of ourselves as we've done and I did it just yesterday and the Neonatal UH intensive care unit our hospital. We can take babies, for instance, who are critically ill and be able to read out their genome just in some cases hours to days, and be able to make critically life threatening decisions about how to save their lives. In some cases, some cases where we'll need to be able to do an emergent transplant of an organ, to be able to take care of a body part for them that is failing them in some cases, to be able to give them medicines that are now tailor made for their particular cystic fibrosis mutation, or as you'll be hearing in terms of gene therapy, to do some remarkable things that we're just beginning to think about for certain types of immuno deficiencies or certain types of hematological conditions like sickle cell. I'll tell you one story that really has been made a big impression on me in terms of what is yet to come for us. When I started medical school, the most common genetic cause of death for children less than two years of age was a tragic condition called spinal muscular atrophy. And I'm using intentionally the past tense. Used to be the most common genetic cause of death. It was heart wrenching for me to see these children, because many of them with the most severe form of the disease wouldn't live to see their first birthday because they were so profoundly weak, so profoundly weak that they could not breathe, They could not be able to inspire, to be able to take a breath. With time, though, and with a lot of this very foundational work that came from the Human Genome Project, from the science that came with it, we've learned that there are in fact not just one gene, but also a backup copy of that gene called survival motor neuron, and being able to use the technology to co opt that second gene, we've been able to think about creative ways to be able to tweak it, to be able to up regulate it, to be able to use it, to be able to compensate for the deficiency that those children have when they're born. One of the remarkable things that we've done with that is to actually, in tandem a developed methods of being able to identify those children as newborns. So at this point we can now actually from my heel prick, be able to identify those newborns who are going to be at risk for spinal muscular atrophy, a progressive degenerative disease that otherwise would have taken their life, and now be able to use either gene therapy or one of three FDA approved medications that is now life saving for them. So that as we've been able to do that and for this condition, which is an equal opportunity condition that affects all different individuals from all different parts of the world, now to have a completely different outcome for them, hopefully to be able to give them long, full and healthy lives that particular scenario. To be able to go from knowing that condition, diagnosing it newborns coming up with treatment we did in record time, really just a matter of four years. We were able to compress that with the diagnosis, rapid diagnosis and getting those treatments, those three treatments to now be approved, and I'm convinced that these are things that we can do over and over again with the foundation of this technology and with the industry that's been developed to be able to use this important to me, and I'll end with this is just as this comes forward. What we did with spinal muscular atrophy was so important to me from an equity point of view that, as I alluded to, we were able to take a drop of blood from a newborn and be able to understand what conditions they would be at risk for. From a public health point of view, where we could do this for every single baby and it mattered not where they were born, who their parents were every single baby would get the same access and does get the same access to this phenomenal care that we can provide them, and that I think is going to be one of the things in terms of the future of what the Human Genome Project will have produced, allowing everych I want to have an equal healthy start to life by using that information to be able to keep them safe and keep them healthy. It's been remarkable to be with you today. I'm honored. We'll be right back. Thank you very much. It's really an honor and a privilege to be being a member of this panel and to be invited by the present Claton's Foundation. I want to stop by saying today's my birthday and I couldn't. I can't think of any other way able to celebrate it with President Clinton and this wonderful lest Steam panel. So again I am in celebrating mood and I think my parents who give birth to men Injuria, US some sixty five years ago and I just qualified for medicare uh you know it's that will be extremely proud to see me on this panel. My comments today really will be to emphasize how we can continue to ensure that the gains of the human genome is indeed accrue to all human populations around the world. I am it was a great honor when I was invited by Franciscollins and Orders to participate in a spinoff, the very first spinoff of the sequence of human genome and that's the International Have My Project WISH. I was indeed very important because apart from knowing the addresses of the four combination of letters that make up our genome, we needed to know how these vary between individuals, between families and also you know, between ancestry populations around the world. And scientists realize that it is only by knowing these differences and similarities that will be able to really fully understand how the signatures of the environment that our ancestors live shaped our genome and how that varies, and how their influences disease and human health around the world. So the engagement of African population in the hap MATH study, especially firstly the europa community in Abiden, Nigeria, was truly the first major effort to engage African communities in the in the human genome and how we can indeed bring our global populations to bear on this wonderful success stories that was indeed funded under the Clinton administration. They have my project, you know, also was again, like I said, my first opportunity to be out of this major initiative. But what you have not show to us. And I just emphasize the point that President Clinting made earlier in his comment, and that is when we look out the diversity and and the magnitude and scope of EMA genetic variations, we we come to the to the conclusion that Africa populations has the highest diversity in the world, and that is not a coincident. That is based on our evolutionary history. African populations, our human based in general, have lived the longest on the African continent and therefore had had their genome have had more time to vary within that environment. And the point I'm making here is that there are aspects of our genome that we can only study by looking at African people. So I want to say that studying African populations and other global populations is a social justice issue, but more importantly it's a scientific imperative. We cannot truly appreciate this coupe of human variation which are going to the roots and the credle of humanity. And this is why I say sometimes that beneath all of our skins, we are indeed Africans. If we treat our history fire enough, most of us, or if not all of us, we end up somewhere on that geographical location called Africa today. So it's critically important that we engage the African community. It will beneto Africa, but it would benefit the world even more so. This is why under the umbrella of the African Society of Human Generics U and working with the Francis Collins and other African scientists, we were able to establish the what we call History Africa, Human Editary and Health in Africa that has brought over two hundred million dollars to change the participation of African scientists and African population in human genetics. This was funded by the end I AGE with Francis Collins as a director and also the welcome Trost Foundation, uh you know in the UK. Now, this initiative was unique in the sense that he actually enabled African scientists to fully participate by giving them the money directly to African institutions and to African investigators, and it has led to the creation of Pan African laboratories. You know about repository Islam by informatics HOBS. That is changing the way African scientists are participating and informing uh you know the Human engine Our project and its success to this as it continue to be. We are not in a position where we can cure this is like sickle cell us engine editing, so that is rebarkable. African countries are also using the gamest of Human General Project to inform a cential drug list in all the way to HIV in places like Bosowana and understanding genetic variation in terms of drug metabolizing for something like coding in Ethiopia. So you can see the gainst the beginning to accrue. But what is important here is creating the opportunity for African scientists to be a part of this wonderful initiative and to ensure that tomorrow's medicine will indeed be available to all humanity. We are indeed all come from the same place and we need to share is that there are diversities. Non illusion, but we should not use it to re emphasize all prejudice. Thank you for inviting me really glad to be a part of this effort. Charles thank you very much for those interesting remarks. UM. President Clinton began our discussion of genomics at the start of the session by emphasizing how much of the genome is held in common and how what we're learning from genomics can be a way of trying to bring the world together and make it a safer place. I think we're learning to that the diversity that you refer to and the pathogenicity of certain UH variations in the genome can be the source of disease. As Wendy pointed out, UH presents a challenge for all of us to be sure that the fruits of our research are widely shared in Africa and Asia, South America, everywhere in the world. And in a few minutes we have remaining before we wrap this up, I'd be curious to hear from the any of the three of you about ways you see that that our existing institutions and scientists can have more of an effect on providing open access to the fruits of genomics. I know that my own work for the World Health Organization of the last several months that there is a receptivity to the idea of of sharing genomic technologies even in the poorest countries and to be sure that, as has been illustrated during this pandemic, that the technologies that have been developed UH in response to and partly in response to the pandemic are influential and in saving lives. Well, I'll just quickly respond, I think, Harold, you're right that we have a great opportunity here and with projects Charles mentioned Age three, Africa has a start on this where the goal really is to enhance research capacity in a sustainable way in low and middle income countries. That is the best possible way to place the kind of capabilities in the hands of those who will need them in their own countries, and also perhaps to stem the brain drain which otherwise has been a really serious issue for losing the talent that you want to have maintained. And I'm excited to see how that is taking shape in Sub Saharan Africa. Although we've got a long way to go. We need to come up with even better ways to provide some kind of a partnership with industry, with NIH and the Welcome Trust and other philanthropy organizations. But we need to get countries in Africa to recognize that this is time for them to invest as well. We need to go from what I would call donorship to ownership, where a ministers of finance recognize that one of the best things they can do for their economy, for their people is to put some money into research and development because it will pay off over and over again. And we're kind of making that case and starting to get I think, some receptivity, but that's what it's going to do. Yeah, I agree entirely with that, and the World Health Organization is going to be participating in that as well. And I think in many ways fulfilling the kind of ambitions that President Clinton and many others have had since the inception of the Genome Project, that this is something that can help unite humanity and as opposed to tearing it apart. And um, we are approaching the end of our session here and I did want to reflect just for a moment on the incredible privilege has been for many of us to serve in the Clinton administration when things did move ahead so swiftly and at the n i H, not just in in elucidating genomes, but in improving UH, the UH our understanding of how the human body and many other organizations work and how the studies of of biological systems from many perspectives can lead to improvements and our understanding of disease and our efforts to create new therapies for diseases like AIDS and cancer and cardiovascular disease and many others. And I think it's used will for all of us to acknowledge our appreciation for the respect that the president in that era, um President Bill Clinton, had on the country's appreciation of science and uh the efforts that the scientists are making to improve human welfare. Why am I telling you? This is a production of our Heart Radio, the Clinton Foundation and at Will Medium. Our executive producers are Craigmanascian and Will Molnadi. Our production team includes Jamison Katsufas, Tom Galton, Sara Horowitz, and Jake Young, with production support from Liz Raftoree and Josh Farnham. Original music by Wat White. Special thanks to John Sykes, John Davidson on hell Orina, Corey Ganstley, Kevin thurm Oscar Flores, and all our dedicated staff and partners at the Clinton Foundation. Hi. I'm Stephanie Street, exa keive director of the Clinton Foundation, where we work every single day to advance President Clinton's commitment to public service and improve lives across the country and around the world. President Clinton often reminds us that we're all in this together, that we rise or fall together. That's why in the face of crisis, we enter the call we act. At the Clinton Presidential Center, we've been proud to work together with partners to serve hundreds of thousands of meals to those struggling, to put food on the table, to get books, early learning and educational resources into the hands of parents, families, and educators who are navigating the realities of remote learning and need it most. And the Center continues to serve as an educational and cultural institution focused on cultivating the next generation of leaders to make our future brighter than ever. Learn more about this work and see how you can get involved visit www dot Clinton Foundation dot org. Slash Podcast two

Why Am I Telling You This? with Bill Clinton

President Bill Clinton has always been known for his ability to explain complex issues in a way that 
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