To accurately gauge the impact of the National Cancer Act of 1971 at the half-century point, Abbe R. Gluck and Charles S. Fuchs decided to focus on more than the science of cancer.
“The book’s goal is to explore ‘everything beyond the science’—but of course the science appears on every page because, fundamentally, the project of addressing cancer is about how policy on all levels—economic, social, medical, and regulatory—should interact with, support, and spread scientific development,” Gluck and Fuchs, the book’s editors, write in the introduction.
Gluck is the Alfred M. Rankin Professor of Law and faculty director at the Solomon Center for Health Law and Policy at Yale Law School. Fuchs is a senior vice president and global head of Oncology & Hematology Drug Development at Genentech and Roche. He is a former director of Yale Cancer Center and former physician-in-chief at Smilow Cancer Hospital.
Why a New Deal?
“We are intentionally referencing the concept of the New Deal, the idea of an all-of-government response, the idea that thinking about cancer in the next 50 years requires a more holistic, 360-degree approach that thinks not just about the science, but about the role of government, social institutions, social structures, benefits, the whole gamut,” Gluck said to The Cancer Letter.
Throughout the book we do ask, “What did we accomplish in 50 years?” I think we accomplished a lot, but, obviously, there’s still a lot of work ahead.Charles Fuchs
“In much of the book, we reference the accomplishments over the past several decades, but we also realize that this is not the time to declare victory under any circumstances,” Fuchs said to The Cancer Letter. “Looking forward, we focus on: how we advance science, public policy, disparities, and access to care; how we pay for cancer care, how we deliver it, and how we address the needs of healthcare providers? All of these things are really critical in terms of a comprehensive new War on Cancer, or as Abbe put it, a New Deal.”
Essays in “A New Deal” focus on a panoramic range of issues, including health law, privacy law, advocacy, health equity, regulatory issues, cost of care and the business of running a cancer center.
In one of the essays, Edward J. Benz Jr., president and CEO emeritus of Dana-Farber Cancer Institute, the Richard and Susan Smith Distinguished Professor of Medicine, and professor of pediatrics and genetics at Harvard Medical School, describes the economics of running a comprehensive cancer center:
Cancer centers, particularly the National Cancer Institute’s 51 designated Comprehensive Cancer Centers (CCCs), remain wary of a sudden reduction in drug prices.
These centers are the nation’s hubs for highly specialized and subspecialized cancer care; education and training of the national cancer care workforce; basic, translational, clinical, and population-based research; and community outreach for prevention and early detection. For these single-specialty hospitals, the margins on cancer drugs are high, particularly for some of the newer agents that are based on precision medicine and therefore given to select smaller groups of patients.
The margins (i.e., net revenues) for drug charges are among the highest that CCCs receive for any of their activities, because of purchase-price markups that are permitted under existing formulae. This is especially important to the sustainability of the CCCs, even those with robust inpatient and surgical activity, because cancer care has shifted significantly to the ambulatory setting, where reimbursements for most health-care services tend to be lower.
The chapter by Benz is available here.
Gluck and Fuchs spoke with Paul Goldberg, editor and publisher of The Cancer Letter. A recording of the conversation is posted here. An edited transcript follows:
Paul Goldberg: Well, Abbe and Charlie, I just wanted to say thank you for sitting down to talk with me, and congratulations on the book. One place, I guess, to start is the title. Why New Deal?
Abbe R. Gluck: Thank you, Paul, for having us. We really appreciate being on the program with you. We are intentionally referencing the concept of the New Deal, the idea of an all-of-government response, the idea that thinking about cancer in the next 50 years requires a more holistic, 360-degree approach that thinks not just about the science, but about the role of government, social institutions, social structures, benefits, the whole gamut.
That’s part of the impetus for the title.
Charles S. Fuchs: I think that’s exactly right. To a large extent, Paul, the timing of the book is the 50th anniversary of the signing of the National Cancer Act, or otherwise often referred to as the War on Cancer Act, which was an effort at the time to comprehensively attack cancer and achieved some major things.
In much of the book, we reference the accomplishments over the past several decades, but we also realize that this is not the time to declare victory under any circumstances.
Looking forward, we focus on: how we advance science, public policy, disparities, and access to care; how we pay for cancer care, how we deliver it, and how we address the needs of healthcare providers? All of these things are really critical in terms of a comprehensive new War on Cancer, or as Abbe put it, a New Deal.
It’s a compendium of essays, of course, and you describe it as “everything but the science,” so it’s a fascinating way of looking at it, which is really the way I’ve been looking at it for decades now.
And one question I had is, looking back at the National Cancer Act, which I’ve been doing a lot in the past year or so, it’s a little understood fact, a little appreciated fact that it’s a public health legislation and a monumental one at that.
Also, it changes the way research is paid for, creating [the NCI] extramural program.
Nothing of the sort has ever been done anywhere in any country or in any therapeutic area.
How does that fit into your book, that concept of here’s a monumental legislation that really is a New Deal?
CSF: Well, I can start. I think that it was a historic moment in biomedical research and cancer care delivery. Specifically, it created comprehensive cancer centers, across the U.S.
It built upon the great work that was happening at the National Institutes of Health and the National Cancer Institute and supported advanced care, research, clinical trials, innovation, at academic and clinical centers of excellence.
Ultimately, it brought innovation closer to more patients and engaged the talent at these centers and universities to work on cancer.
Throughout the book we do ask, “what did we accomplish in 50 years? I think we accomplished a lot, but, obviously, there’s still a lot of work ahead.
ARG: I think that’s right. I think also if you look at the National Cancer Act, it was both incredibly ambitious, but also perhaps not ambitious enough.
And now we are thinking about the healthcare system even more broadly in the way that we’re trying to push in this book.
So, a real National Cancer Act, in 1971, might have said, look, we just enacted Medicare and Medicaid in 1965, but there’s still a whole part of the population that doesn’t have access to health insurance, and so that would’ve been a different way to think about it.
It might have also been a more holistic approach that integrated public health in a way that, quite frankly, hasn’t been as much of the mainstream and a core part of the cancer strategy as it should or could have been.
And then you could also think about some of the other really important parts of the system, in terms of the economics of how we pay for cancer care, not just how we pay for research, but how we pay for cancer care as a whole and how we support our cancer care institutions.
One other thing I would add about this, and I defer to Charlie to talk more about it is, that act created the structure of these national cancer centers that are now throughout the country, but over the last 50 years, there has also been a proliferation of local cancer providers and thinking about their role in treating patients and their role in providing access to patients who live much closer to their local cancer center than maybe to a flagship center like a Yale or Dana-Farber is something else that a really comprehensive act would do.
Well, there are times and places in history when a collection of essays can make a difference. How did you choose the contributors?
ARG: The idea for the book actually began in probably 2016. I had developed a really keen interest in cancer policy.
What does it mean to talk about cancer policy? What is cancer law? What is cancer regulation? What is the role that people who are not world-famous oncologists, like Charlie, can do to play their part in the War on Cancer?
So, I got very involved with hose questions, and I wound up actually going to one of the Obama-Biden Cancer Moonshot summit meetings, and found myself a little dissatisfied with the abstraction of what does it mean to do cancer policy. What does it mean, as the Moonshot continued to emphasize, to break down regulatory barriers? What is the role of law in this history?
And so, I went to Charlie to try to develop an agenda, to think about how the law school and lawyers and policymakers who are not scientists can contribute, and in doing that, we realized there was a lack of rich secondary material in this area.
What does an act mean? Is an act just money or is an act structural reform? And I think that is the question, not to dodge it, but to make it a little more nuanced.Abbe Gluck
It was very hard to get educated on what we had to do to accomplish our goal and to really have a positive intervention. So, Charlie and I decided to have a conference.
We had a huge conference at Yale in 2018. There were 700 people there. It was the largest cancer convening in Connecticut history, and I think one of the largest conferences that the law school has ever hosted.
We were overwhelmed by the interest. We invited a huge range of people to that conference, the best and the brightest in each of their fields, and then from there, we solicited interest for those who wanted to follow up and author chapters. And we really tried to tag a diverse array of people, from those who are leaders in the business sector, to those who work at major pharmaceutical companies, to those who are government officials, to those who do the everyday science. Charlie, I defer to you on more on that point.
CSF: Paul, I have to credit Abbe with launching this effort. Abbe is a leader at Yale Law School and the Solomon Center and a thoughtful innovator in healthcare. Abbe reached out to me, came to my office and said, “Let’s have a conference at the law school on cancer and the law.”
And I have to be honest with you, I had never conceived of the idea and, frankly, from my vantage point at the Yale Cancer Center, I hadn’t actually walked into the Yale Law School. But I did agree to work with Abbe, and it was the best thing I did – creating a really exciting opportunity.
And the people we brought in, spanning science, policy, disparities, healthcare delivery, clinical care, delivered a broad perspective. Bottom line, as Abbe points out that, both the conference and the book really address the larger vision in our war against cancer, in addition to innovation in science, because these things are all interrelated.
For instance, we had Otis Brawley both speak at our conference and write a chapter in the book. As Otis explains, while targeted therapies and immunotherapies have revolutionized cancer care, these innovations must be available to the broader population. And so, these things interrelate so significantly.
Well, what about, covering this, all of this, I’m seeing health equity becoming absolutely the central element of this and questions of delivery, even though, as you know, while Obamacare has had to deal with a lot of setbacks over the previous administration. So, there seems to be an acceptance of this right now, at least in oncology—of the need for equity.
ARG: I want to not take credit, but really commend our contributors, who way back, in 2018, before it was the central part of the conversation, at this conference, were driving this point home.
And after our conference, and after two days of discussions about health equity, and disparities across access and clinical trials and sampling, we heard from participants about a slew of follow-up conversations about new collaborations on those important topics, such as the importance of collecting more kinds of cancer tissue from persons of all different kinds of ethnicities.
So, just bringing together different people who approach health policy from different perspectives is so instrumental. Otis Brawley and Blase Polite, have obviously been at the forefront of talking about cancer disparities for a long time, and we’re just really delighted to have that work elevated in the book.
I think what’s very interesting, as you point out, Paul, is how the discussion about disparities is now in every aspect of thinking about the field and health policy. If you look, interestingly enough, at the final chapter in the book, which is written by Greg Simon, who was the director of the Obama-Biden Cancer Moonshot in 2016, he ends by saying the most important thing we can do for the next Moonshot is deal with this health equity issue.
And I do think that the COVID-19 pandemic has had an important role in elevating the importance of healthcare disparities, and giving it visibility that it didn’t have, even though they existed before. The dramatic difference in COVID-19 outcomes for people from different cultures and ethnicities has really brought this front and center in a way that I think will have important fringe benefits for cancer policy.
Yeah, let’s talk about that a little bit later. I’d love to do that. Should there be a new National Cancer Act? That’s been sort of thrown around, this idea. I mean, I’m not paid for my opinions, but my answer would be “No,” just to get things started.
ARG: Do you want me to answer that first, Charlie? Or do you want to answer?
CSF: Abbe, you’re the lawyer, you start.
ARG: I think it’s interesting. I think it’s a challenge. What does an act mean? Is an act just money or is an act structural reform? And I think that is the question, not to dodge it, but to make it a little more nuanced.
We have a chapter by Rosa DeLauro, who’s the chair of the House Appropriations Committee. I wrote it with her, and we had a lot of discussions about what should be in the chapter.
And I was pushing the idea of discussing substantive legislation, because that’s my area of expertise– exactly what we’re talking about, Paul, what does an act look like? Should an act be disease specific, cancer system as a whole, etc.?
And her response was: Congress plays a really critical role in appropriations, and hasa funding power that nobody else really has. But even as she focuses on the critical importance of money in this space—and a National Cancer Act that even just gives more money, is obviously going to be very important–that wouldn’t accomplish structural reform.
And so the kind of act that we would need to accomplish what we are talking about would have to include pricing reform, both in access to pricing, but also in allowing innovations like value-based pricing and other innovative pricing regimes, but would also have to attack disparities, as well as addressing appropriations.
It would have to give the CDC a lot more money than it has now, and a lot more prominence in the cancer space than it has now. It would have to do a whole bunch of things. And it would have to find a way to incentivize the kind of private-public collaboration that all the authors in this book really seemed to emphasize.
Nobody thinks the federal government can do this alone. We need the private sector involved. So, I think it would have to be an act of Obamacare scale in the cancer space to be something that would really be transformative, as opposed to, something more specific like an FDA Cancer Reform Act that might encourage quicker and more innovative development of drugs. But to have a comprehensive 1971-type act or even, it would have to be, I think, extremely ambitious.
Also, as our authors note, such an act would need to take on reforms in areas like data sharing and the law of privacy and personal genetic information. These are so critical and important, as some of our authors point out, to the research, but also implicate a lot of personal rights that everyday people m as well as hospital general counsels, feel very protective of.
So, we’d have to look at the world the way we did, at 360 degrees, and really address it in a comprehensive way. That would be very exciting.
So you’re saying there should be, or?
ARG: I’m saying that if that was on the agenda, it’d be very exciting. I think something short of that winds up creating a vision that’s too narrow about what the War on Cancer, the next generation of the War on Cancer, really should be.
And right now where we are, there’s nothing on the horizon that is tackling that 360 Affordable Care Act-like expanse for the cancer space. And so, while we can address, in small scale, these smaller interventions, nobody should think that, that would be a substitute for a new 2022 National Cancer Act. An FDA reform? Great!
Health insurance reform? Great!
But something that is really that comprehensive would require a lot of ambition and a lot of motivation, and, I don’t know, Charlie—you tell me—in our discussions, we haven’t seen many people calling for a new act. The kind of changes we’ve been hearing about are those from within.
We haven’t heard anybody saying Congress is the answer to this problem. I do think people think the power of the presidency is important, that the platform of the presidency is important in galvanizing faster, more collaborative research, but we haven’t seen people calling for an Obamacare of sorts for cancer.
CSF: Paul, I certainly hear you in that, in passing an act, there was some naive thinking. In fact, there were critics when the National Cancer Act was passed in ‘71 who thought it was naive thinking, including one thought leader who said that, the idea of this act solving the problem of cancer is like trying to land a man on the moon without actually understanding Newton’s laws of gravity.
In other words, we didn’t know enough then. We know a lot more now, but we also know is it’s not as simple as let’s pass an act and throw money at it.
In the book, our contributors really focus on the specific items that we need to tackle.
Abbe referred to open-source data sharing, and there’s a phenomenal piece led by a group by Charles Sawyers.
Given the explosion of genomic technologies and all the information we are now gleaning, which represents an extraordinary laboratory, we need to pool all of these data and link it to clinical outcomes, treatment, etc., to truly generate transformative insights.
Throughout the book, we seek to offer specificity on the work ahead. For instance, there’s a great chapter on the role of states in cancer care and cancer research. States that have reaped the benefits of the tobacco settlement, but in fact, some states spend 3% of that money on cancer research and cancer care delivery.
There are states that don’t embrace the ACA, and evidence from our authors that in the states who don’t embrace the ACA, cancer patients do worse.
So, these are among the things we have to address. Similarly, on the science side, I don’t think it’s just throwing money at the problem. I think it requires a new way of thinking, and whether it be ARPA-H or something like that, where we really actually engage the broader scientific community with a clear focus and set of milestones and deliverables.
Moreover, we should not go after not the incremental advances, but, rather, the high-risk/high-reward advances. We must recognize that failure will occur with some of these projects. Ultimately, we need to bring the best minds, across industry, academia and beyond, focused on a specific problem. Potentially, we can even advance the broader challenges in science as well.
Last time this was attempted was about 15 years ago, and this was fueled by the American Cancer Society, and that objection to that was that by putting together kind of a cancer council and a cancer czar even, diluted the power of NCI and the role of the NCI director as the science-based manager of the entire program (The Cancer Letter, Aug. 8, 2003; July 25, 2003). So, that’s getting back to some history.
CSF: I hear you, and I think this type of initiative, whether it be ARPA-H or otherwise, it probably needs to be housed within NIH. Still, it also needs to be a less hierarchical organization in design.
It needs to be a flatter organization, with project managers for each area that obviously bring together the best and the brightest, with real resources, but also real expectations.
There are examples, we all know, whether it be the COVID vaccine or the Human Genome Project, when we put adequate resources and the right people together focused on the end game, where great progress was achieved.
And I think with that kind of an organizational structure, within NIH, and under the authority of NIH’s leadership, we could do some good here.
ARG: I would say, from my vantage point of just having come out of the administration, working on the COVID-19 response, there is a value to the coordinating power of the White House across the federal government and beyond. In the context of the Moonshot, there were some notable examples of the DOD, Department of Defense, working very closely with the healthcare agencies, to establish breakthrough therapies or create synergies.
And if you are thinking about doing everything from incentivizing research to addressing disparities, to fixing the health insurance system, you need more than just NCI. You need NCI leading the science, but you need that kind of other coordinating push.
We have a great chapter from Rich Schilsky that talks about the number of federal agencies that are involved in the cancer space and how they’re often very fragmented and siloed, and even turfy. He uses the example of CAR T, one example, follows it through the process, and describes all the different ways the different agencies touch it.
And you look at that and you think, “Okay, how are we going to break these barriers down and push things ahead?” The White House might have a role to play, it doesn’t mean that the NCI is not in charge, but to have some kind of coordinator or someone that’s accountable for bringing the whole force of the federal government and beyond together, I think is valuable.
Yeah, and that’s also the central element of the National Cancer Act, and the presidential power, and it’s wonderful to see it actually continue this way. The one group that seems to have lost its power is the President’s Cancer Panel, because early on it was actually playing a role, and it really doesn’t.
No President’s Cancer Panel member seems to be able to call president and say, “Hey, something is missing.” But with us just getting deep into the weeds of it, but what about advocacy? Without advocacy there would’ve been no National Cancer Act, and the whole thing would’ve looked much less interesting.
ARG: Well, I mean, super interesting. Paul, I know you’re personally very interested in this, and I heard you talk about Mary Lasker, and the whole story of the advocates of the time, but I do think we have a modern version of that in the book as well. The role of the advocates during the time of the Nixon administration pressing for the National Cancer Act is well chronicled.
But we have two fabulous chapters from Sherry Lansing, the entertainment industry executive, and Nancy Goodman of Kids v Cancer, an advocate-lawyer who lost her son to cancer. Both of them talk about the role of the outsider in galvanizing Congress to do things.
I think Nancy Goodman’s chapter is very instructive. What she talks about is the number of cancers that offer little financial incentive for profits from the private drug market and maybe perhaps even little incentive in Congress for focus. Pediatric cancers is her example: they often serve a very small population, there may not be big money in those cancer drugs, and it’s a small win for Congress. It’s not a huge population that’s affected.
She points out that advocates have a very important role to play in those kinds of cancers in particular in focusing attention and finding ways to incentivize research for cancers that serve a small number of people.
Charlie, correct me if I’m wrong, but I do think one lesson that I took away from the book is that with the advent of precision medicine, there may be even more kinds of cancer treatments that are quite targeted and serve smaller numbers of people as a whole. And one question is how to keep Congress and industry motivated to address all of those kinds of cancers, if increasingly we’re going to have therapies that are more targeted.
CSF: That’s absolutely right, Abbe. Honestly, I looked back a couple of weeks ago at the chapters that Nancy Goodman and Sherry Lansing wrote, and, frankly, they’re inspiring. They each came from a story of personal tragedy, the loss of a family member—in Nancy’s case, a child, and in Sherry’s case, a parent—and each decided that they were going to do something really important.
What Nancy has done to champion work in research in pediatric cancers has had enormous impact.
Sherry and her leadership of Stand Up To Cancer, has been extremely important in raising money and creating an infrastructure that brings talented investigators to work together.
Specifically, in Stand Up To Cancer, you don’t get a grant unless you bring the best and the brightest investigators together, across different institutions, and require milestone-driven deliverables. So, both Nancy and Sherry represent two really accomplished individuals and patient advocates that did amazing work and continue to do great things.
It’s interesting that cancer has never really gotten that kind of a pan-cancer advocacy, because Nancy is representing a very, kind of a focused approach, very elite policy-driven approach and Sherry Lansing also. There’ve been efforts to start things that are more like the AIDS movement, but cancer has never really… It’s been balkanized, and maybe it should remain that way; I don’t know. What are your thoughts?
ARG: I love that question. It’s a great question, because it’s bringing back to my mind so many things that have been discussed in the book in different chapters. So, what’s so interesting about this is that the different kinds of cancer often have different lobbying efforts, or different constituencies in Congress.
We have a couple of chapters that mention the efforts to have a pancreatic cancer act, an act for a particular kind of cancer. We have a story about Harold Varmus opposing this one-cancer kind of act as detrimental to the overall project. And one thing that Congresswoman Rosa DeLauro pointed out in her chapter, which was so interesting, is the NIH budget.
At our conference, an NIH budget expert Eric Fatemi, said the same thing, which is that, the NIH budget is consistently bipartisan in Congress and consistently gets elevated, even if not as much as people would like, and the reason is that it is a budget that is holistic.
The budget does not differentiate across different kinds of cancers; they view the budget process as cancer as a whole, so there’s not internal in fighting among particular cancers in the NIH budget.
And Congresswoman DeLauro thinks that’s very important for the success of the project and urges that kind of, as you’re saying, pan-cancer advocacy as a whole, so that different interests aren’t fighting Alzheimer’s versus cancer, breast cancer versus pancreatic cancer, and so on.
But relatedly, one challenge is, how we talk about cancer going forward. Do we still talk about it as cancer, or we talk about it as many different kinds of cancer? Throughout the book, several of the authors said cancer is really many different diseases, and the more you label it that way, the harder it would be to you come up with a pan-cancer lobby that thinks about, and lobbies for, cancer as a whole.
It would probably, if something like that were to happen, it would be the largest constituency in the United States, and possibly the world.
ARG: In political science theory, there are views that a large and diffuse constituency cannot effective advocate before Congress. That is a well-known political science theory, and so you need concentrated interest groups, where everyone is invested in the outcome of the success.
Nancy Goodman is a great example. She’s part of an interest group of people that are personally and holistically invested in pediatric cancer, their lives is structured around bettering the world of others who have that disease.
They’re going to be the most aggressive, targeted, focused advocates. AARP is a very famous organization that has a diffuse group of interests, but they do have one issue, which is that AARP is obviously for older Americans, but that could be a model.
It is an example of an organization that has been effective in lobbying for a population, even though that population does have diffuse interests, but arguably the over-50 population has more united interests than even multiple different kinds of cancers and the therapies that they have and survival rates that they have and so on, but I defer to the scientists on that.
CSF: Paul, I think this is where the role of government is important, because we know that, in cancer research, cancer care, and advocacy, we have to commit to understanding the unique entities that are cancer, representing hundreds and, perhaps, thousands of genetic subtypes.
As such, we do need organizations like the federal government, and, foundations, like Stand Up To Cancer, to ensure that there is equitable distribution across the needs of all cancer patients and all cancer research needs. Nonetheless, at the level of most advocacy groups, there is going to continue to be a strong focus on individual cancers.
Well, I’m just looking also at the table of contents right now, and there’s a lot of very interesting stuff on the economics of–well, insurance—but also economics of the cancer center. Maybe we should talk about that.
CSF: Well, I can certainly start, and Abbe can speak to this with even greater expertise. Ed Benz, who was the previous CEO of Dana-Farber, has very insightful chapter of how cancer centers pay the bills.
Regrettably, we have a somewhat Byzantine system of using the revenue from cancer treatments to pay for other services that are critically important, like social work, psychosocial care, nutrition, because they’re not adequately reimbursed.
This creates a fairly complicated system, rather than paying directly for the things that we see important in cancer care delivery.
ARG: Ed’s chapter is really unique. We haven’t seen anything like that in any other publication, and we’re so happy to have that perspective.
Barbara McAneny represents the view of small oncology practices, and she adds a complementary perspective on how the way small cancer centers are paid is different from large hospitals, and her view is the money should follow the patient, not the institution.
And she talks about the ways in which small providers are, in her view, systematically, economically disadvantaged from treating cancer patients in the same way. And she talks about the value of those local providers to the patients in their communities and the importance of sustaining them in this era of intense consolidation in the industry.
I guess maybe we should talk about pharma as well, and the economics of drug pricing if it’s really the issue. There’s a lot to that issue. It’s not just the drug pricing. It’s more complex.
Having served in the role of cancer researcher, clinician, cancer center director, and now leader of heme/onc drug development at a large biotechnology company, I recognize these issues are critical in how we deliver cancer care.
Both in my prior role as a cancer center director and in my current role in biotechnology, we are committed to ensuring patients have access to life-saving therapies, including free meedicine, when needed.
In my current organization, we invest $13.3 billion each year into R&D to take on high-risk/high-reward, important projects in basic research, applied research, clinical trials. So, let me just say that we are committed to delivering the promise of great science.
That’s more than double the NCI budget—quite a bit more.
ARG: I think, Charlie covered it. I do think that what Ed Benz talks about is relevant here. People focus on drug pricing as the evil in the industry. But Ed’s point of view is that you can’t just pull one lever in the cancer pricing space without thinking about the other levers, think about all the different things that various parts of the system are actually subsidizing.
So, one of the cautionary tales that he tells us is to be careful about reducing reimbursements for drugs without thinking about what other services might be lost along the way if large institutions are using profits from to cross-subsidize other services, like second opinions, and as Charlie just mentioned, R&D.
That just goes back to our point that there really has to be a holistic approach. We really have to think about the system as a whole. Zeke and Cary also talk a lot about different pricing models, value-based pricing, pricing based on performance, these are pilots in the cancer drug pricing space that have been touted for a long time, but we haven’t made a ton of progress on them, and that seems to be like something that is going to be the focus in the pricing space in the future.
CSF: I’ll just tell you also from this vantage point of a cancer center director, which I did earlier this year, there’s no way that we could have covered our costs at the Yale Cancer Center without the reimbursement of the cancer treatments.
We couldn’t adequately compensate our staff, we couldn’t reinvest in research, we couldn’t start programs focused on immunotherapy, on research in brain tumors, and services like social work, nutrition, prevention care in the community without these revenues.
So, I guess we should talk about COVID, Abbe, that’s your area of expertise, COVID and cancer, from the legal, point of view, the just legislative point of view. What has changed as a result of COVID?
ARG: Well, look, I want to let Charlie talk about the upstaging issue, about people who did not get access to care early in the pandemic, and the concern that there may be more people with more cancers discovered at later stages is very important from the science perspective.
I’ll just speak to the policy perspective… From the policy perspective, I think COVID has done a couple of very important things.
First, it does show the ability of the research community to act quickly, with the right level of government support, clear milestones and a sense of urgency. For all the sense of urgency that we’ve had in this War on Cancer, COVID really showed us what can be accomplished with the right kind of financial incentive structure and motivations, with government public-private partnerships in particular.
I think that a lot of people, including Greg Simon, who wrote the last chapter in the book, and who was, as you know, the Moonshot director for the Obama-Biden Moonshot, feels that that is a critical lesson that we have to take forward with us.
That obviously was very high risk, but very high return.
There were critics when the National Cancer Act was passed in ‘71 who thought it was naive thinking, including one thought leader who said that, the idea of this act solving the problem of cancer is like trying to land a man on the moon without actually understanding Newton’s laws of gravity.Charles Fuchs
Second, as I mentioned before, I think that COVID has shined light on a lot of problems with the healthcare system in general, which were there before, but now have prominence. And there’s an opportunity to take advantage of those windows being open to try to capitalize on them.
And I’ll mention two in particular. One is our lack of infrastructure in public health. So, one thing that COVID has showed us is that we’ve et our public health system fall by the wayside.
We saw that firsthand with the lack of contact tracers and the lack of other public health infrastructure we have across the states in this space.
This translates to what Congresswoman DeLauro wrote about how the size of the NIH budget dwarfs the CDC prevention budget by embarrassing amounts and Melinda Irwin and others’ own terrific chapter on the importance of integrating public health prevention strategies.
Just going back to the Zeke Emanuel and Cary Gross chapter, too, they point out that the biggest thing we can do to reduce cancer costs in the future is increase our tobacco prevention efforts. So, if you think about public health and prevention, we’re thinking about that.
And then third, the other thing I’ll mention as it relates to COVID, apart from coordinating power of the presidency and the importance of the presidential platform when used appropriately, which I think COVID really does show us, is the spotlight it has shined on healthcare disparities and how lack of access to the same kinds of early treatment and same kinds of medication has an incredible impact on healthcare outcomes for different populations.
Taking that lesson into the cancer space, I think, is incredibly important. The head of the Biden COVID Equity Task Force, Dr. Marcella Nunez-Smith, happens to be the disparitiesirector at the Yale Cancer Center, very proud to have her as a colleague and she is someone that Charlie brought to the cancer center. And it shows that there is a connection, There are people, like Marcella, who workin the cancer space on disparities who are working in the COVID space now, and more of those lessons brought into the cancer space would be incredibly important,
CSF: Abbe, those are all great points. I would just add from the vantage point of a cancer center director, the experience of COVID particularly highlighted the vulnerabilities of our healthcare system and also the acts of heroism and triumphs that came out of it.
Specifically, in Connecticut in the early part of 2020, when the pandemic really got started, and we had a significant number of COVID patients hospitalized in our facilities.
At the onset, like many other institutions, we had a profound lack of PPE. We needed to ration masks. Frankly, the heroism of nurses, physicians, healthcare workers—everyone who keeps the hospital going, working sometimes without adequate PPE, ensured patients received safe and effective care. Regrettably, at the same time, in first portion of the pandemic, cancer screening rates dropped 80%, which will undoubtedly will have other unfortunate consequences.
Still, there are innovations that emerged from the pandemic. Specifically, the introduction of telemedicine and how our cancer research operations pivoted to work on COVID to provide great insights in the immunology and the treatment of this virus.
So, I think a lot of lessons learned. Good things can sometimes come out of a crisis, but as Abbe points out, we have to look really carefully at our public health system. We can’t let this happen again.
Well, what about early thinking about mRNA? You know, that is 50 years of cancer research gave us mRNA.
CSF: It’s a great point. These efforts were, in part, started as a cancer vaccine effort, and hopefully that’s something we’ll continue to advance. However, leveraging that technology to really create effective and safe vaccines for COVID-19 is an incredible triumph of cancer research and ultimately, now, research in virology and prevention.
So much comes out of these efforts in a large part because cancer researchers and companies, focused on cancer research, did pivot their resources to tackling this public health problem.
Which I guess gets us to the next question, which is ARPA-H, because there’s a question of engineering and cancer. We thought we were there. They thought they were there 50 years ago, that it’s going to be as easy as putting men on the moon or the Manhattan project, which were all engineering projects, but cancer was nothing like that. And, you know, ARPA-H is about engineering. Are we there? Are we there yet?
CSF: Abbe, do you want to start?
ARG: I can start with the policy and turn to you to the science Charlie, but I think ARPA-H in many ways is still developing. It’s still too early to talk about what it’s going to look like. But I think that it brings together a bunch of the different ideas we talked about today. It’s very, self-consciously a “not just the science” program.
President Biden has been very clear that an important component is going to be addressing structural issues like disparities So, I think that’s an important piece of it. Obviously, there’s a funding piece of it. And then there is a piece on capitalizing on the successes of COVID, harnessing the high risk, high reward, model of targeted short-term government investment and private partnerships to achieve advances quickly and meaningfully. It’s all of that. But, at the same time, it’s not everything in the book.
It’s not the pricing structure, it’s not the insurance system, it’s not the New Deal for cancer, but it’s an important piece, and it’s in many ways, I think a logical follow-on of the COVID pandemic, combined with President Biden’s experience about the unique power of the presidency, from the Moonshot itself, as the last chapter reveals, and how many collaborations were incentivized just by virtue of Vice President Biden, asking people to work together in 2016, and trying to put that on steroids now in a high-tech kind of way with the lessons of the COVID pandemic behind us.
CSF: I think from the science standpoint, ARPA-H has the potential to accelerate medical breakthroughs, but it’s can’t be not business as usual. The work can continue and probably should be led by NIH. It needs project managers in a fairly flat, lean organization who bring together the best and the brightest in a fairly silo-less environment to work on specific problems with a clear focus and adequate resources.
There also need to be deliverables and milestones that are monitored regularly. That’s going to require, bold leadership, significant investment, and a careful look at how we do the work, that can complement the somewhat agnostic grant funding mechanisms, already in place, that do bring great value.
ARG: I think that’s a great point also that the book highlights in several chapters, reflecting the two forms of research: the high-risk, translational research and also the basic science research. And the idea that ARPA-H is focused, mission-driven, and outcome-driven does not mean that we should give up on, on the value of the basic science and being able to preserve that alongside of a more targeted research program.
Maybe we can put it in a nutshell, how is it different from what NIH does? How is it different from what pharma does, from what industry does?
CSF: Well, I would look at either the Human Genome Project or the COVID vaccine efforts… I think those are different elements of what NIH or industry has done. And it involved collaborations with a very keen focus, significant funding, and a very important and obvious deliverable.
That’s very different than our current systems, but it complements all of it. We need to bring to bear the talent, across that spectrum of research, with adequate funding and support, and an organizational structure that really is focused and committed to driving the mission.
Well, makes a lot of sense. Is there anything we forgot? Anything you’d like to close with?
CSF: Paul, we really appreciate your taking the time to speak with us. Abbe and I are really proud of the work that our authors have done here. We think it’s an important contribution, and hopefully a potential blueprint for the next 50 years.
ARG: Put very perfectly, Paul, let me just echo my thanks to you and to Charlie and to everyone who contributed to the book, helping us broaden the conversation to a broader policy conversation about the future of cancer.
Thank you so much for talking with me.