Nearly 600,000 people in America will die of various forms of cancer this year, according to the National Cancer Institute. Millions more will be affected by the disease as they, or people close to them, undergo treatment.
On Dec. 6, The Washington Post hosted scientists, policymakers and patient advocates for “Chasing Cancer,” an in-depth discussion of advances in cancer detection, treatment and care. The speakers talked about how genetic tests are being used to determine cancer risk, and they debated the effectiveness of – and the difficulties posed by – some new therapies. Lawmakers also reviewed efforts to craft policies that may change how, and at what cost, patients receive care. Participants also discussed the impact that cancer and its treatment have on patients. Excerpts from the discussion are presented here, and videos of the full event can be found at wapo.st/chasingcancer.
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GENETIC TESTING
Theodora Ross
Director of UT Southwestern Medical Center Cancer Genetics Program
“We don’t have enough genetic counselors. We don’t have enough doctors who understand genetics. So when people get genetic tests, they think, ‘Oh, it’s done. I’ve done it. I’m fine.’ But it’s not. It’s not a single event.
“I think the cost of the [genetic] test has definitely gotten into a realm of where it can be democratized. But the cost of care is different. You’ve got your genetic test results. How do you act on that? . . . [People] need to have several doctors to guide them through all the steps that they need to take to keep themselves healthy. That’s a harder problem.
“One of the big discoveries in tumor sequencing is that a lot of people with tumors have genetic, or inherited, defects. In fact, that’s one of the biggest discoveries. It’s not anything about the tumor that we’re targeting, and that’s surprising. I think it still goes back to the fundamental of what are you predisposed to and discovering that. Again, we’re missing the genetic counselors and the genetic care. I do worry that we’re going to miss some very important opportunities genetically when we’re just sequencing tumors without having good genetic care.”
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Robert Nussbaum
Chief medical officer, Invitae
“In terms of screening, we know that from the work we’ve done that only half of the people who end up with a positive genetic test indicating there’s a strong predisposition for cancer would have been tested under current, fairly narrow guidelines. I think the guidelines need to be broadened. That’s quite different from saying the entire population should be screened. But I do think that genetic testing is not being offered as widely as probably it should be.
“I think the major limitation right now is we don’t know how to interpret the vast majority of variation in the human genome. There are millions of differences between any two individuals, and even in the parts of the 2 percent of the genome that contains the coding, there are tens of thousands of differences. We don’t know how to interpret the vast majority of them. That’s a part of the current thrust to make the data available so that we can do research and really understand it.
“I’m very passionate about the point that we are not going to make great progress if we don’t free up all the data that’s being generated both in genetic testing companies and on the research side.”
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21ST CENTURY CURES ACT
Gregory Simon
Executive Directive, White House Cancer Task Force
“Nixon declared war on cancer in ’71. I don’t say this often: You really have to admire him because he had no army, he had no weapons, he had no strategy. But he said, ‘We’re going to do this.’ And now, 45 years later, we have millions of patients who are willing to help, thousands of trained doctors, brand-new therapies like immunotherapy, better radiation and less harmful [chemotherapy].
“We needed a new strategy, and that means our government has to operate differently as well, which has been one of the focuses of the Cancer Moonshot. How do we redesign our systems to live in the world we are actually in, rather than the one we got after World War II, when the government took over university funding?
“The money for the cures, for the Cancer Moonshot, the money for precision medicine, the money for the brain initiative by themselves will not be nearly as valuable if they weren’t accompanied by all the other systemic changes that were in the [21st Century Cures Act].
“The money in the bill will allow the National Cancer Institute to screen people who get colorectal cancer in their 30s – and all of their family members – for something called Lynch syndrome, which causes people in their 30s to get endometrial or colorectal cancer. You can identify those people and have them start getting checked for those cancers much sooner and save thousands, if not millions, of lives. It’s a huge, huge benefit.”
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Debbie Wasserman Schultz
Democratic Representative from Florida
“There’s no question in my mind that the most significant gap in [the 21st Century Cures Act] is that it did not take on the astronomical and soaring prescription-drug-price crisis. We are really being priced out of the ability to afford drugs. Our health-care system is being priced out of the ability to do that.
“While that is a glaring omission, I know Democrats are committed to aggressively pressing for making sure that we can take this on, and hopefully we’ll be joined by our Republican colleagues as well. [I’m] not sure if we’ll take similar approaches, but we do need to take it on.
“Speaking as both a legislator and as a cancer survivor: Whether it is drug therapies or treatments or devices – and having really heard the angst of constituents so many times who, through a very bureaucratic and years-long process, were still not able to get access to drugs that could potentially have saved their lives or added to their life – a balance needs to be struck.
“You don’t want to put things out into the market that could harm people, but at the same time you don’t want to keep drugs and therapy and devices from people that could help them. It is a legitimate concern that we not want to have a process that is expedited so much that it harms people, and that’s something that we’re going to have to continue to monitor, which is our goal as members of Congress.”
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Marsha Blackburn
Republican Representative from Tennessee
“We knew that technology was leading us toward precision medicine and personalized medicine. We knew that, as the governmental entities that create the environment for the delivery systems or for the research, we had to make some changes in how we were approaching things. Our goal in all of this is to make certain that everyone has access to affordable health care.
“As we looked at it, we decided to break [the 21st Century Cures Act] apart. Instead of doing a series of hearings, like many times you do when you’re working through a committee process, what we did was to work in task forces and to drill down a little bit deeper into what 21st-century cures would look like.
“What would be the deliverables? Where should we put some incentives? What did NIH need? What did the FDA need? And subsequently, how would CMS need to adjust their reimbursements and their approach? We really did begin this project of 21st-century cures with the end in mind, where we would want to go.
“It was really a collaborative effort. As we go forward and look at the insurance side and also health-care delivery and health-care access, I hope that we keep that collaborative nature of working in a task force and finding where we can agree, and using that as a foundation to move forward.”
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YOUNG-ADULT CANCERS
Gregory Aune
Assisant professor of cancer research at the University of Texas Health Science Center at San Antonio, who as a teenager was treated for Hodgkin lymphoma
“When I finished, I very much thought it was going to be all over and life would return to normal. What I’ve learned over the last 27 years as a survivor [of Hodgkin’s lymphoma] is it’s really never over. There are consequences of the treatments that we take.
“Cancer is a lifelong disease, whether or not you’re actively treating it or dealing with the consequences. It’s really important that we take that into account when we educate patients and talk about developing new drugs, because the future for our patients is to push the bar. What I want for them is to have my outcome of survivorship but not necessarily have my overall outcome, which is kind of riddled with some of these late health consequences.”
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Matthew Zachary
Founder, Stupid cancer, who was diagnosed with pediatric brain cancer when he was 21.
“The perception is: Just get over it. You’re done, right? And that could be any age. But when you’re younger it has a deeper meaning because you’re here, just supposed to be taking 10 steps forward every day like anyone else is in their 20s, and you just can’t do that.”
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Ariella Chivil
Diagnosed with Hodgkin lymphoma in college and treated in an immunotherapy clinical trial
“One of the key components that helped me was figuring out what made sense for me as a patient. Yes, there are the core drugs. I made a decision matrix. When I had four drugs to choose from at these different institutions and they were comparable in terms of the early research around them but [there were] things like convenience: How easy is it to get to this outside institution? What’s the drug-delivery mechanism? What’s the provider like? What will my relationship be like with them? These were all components that I had not considered prior to going down the rabbit hole of all of the different clinical trials you can get involved with, and they’re really important.
“Whether it’s [someone’s] initial diagnosis when they first sign up for a trial . . . we need to put it in the hands of patients and their caregivers so they can make an informed decision no matter what route they take. It’s crucial. Flying blind is not an option.”
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CELEBRITY PLATFORMS FOR PATIENT ADVOCACY
Fran Drescher
Actress, Founder and Visionary, Cancer Schmancer Foundation
“It took me two years and eight doctors to get a proper diagnosis with uterine cancer. I got in the stirrups more times than Roy Rogers.
“The reason was because uterine cancer typically hits women who are post-menopausal or obese. Since I was neither, I kept slipping through the cracks. I realized that we have a medical community that kind of subscribes to the philosophy of ‘If you hear hooves galloping, don’t look for a zebra, it’s probably a horse.’ But if you happen to be a zebra, you’re going to slip through the cracks. By the grace of God, I was still in Stage 1 because I was lucky that cancer happened to be very slow-growing. And [I was helped by] my persistence to keep trying to recognize what was really wrong.
“I feel like I got famous, I got cancer and I lived to talk about it. So, I’m talking about it. Life hands you blows, and what you do with it and how you grow through it and what becomes of you as a result is what makes all the difference. It can be an opportunity for you to have a more purposeful life. Sometimes the best gifts come in the ugliest packages.”
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Taboo
Rapper, the Black Eyed Peas; global ambassador, American Cancer Society
“When I recovered from [testicular cancer], I wanted to heal first before I told the world. I didn’t want this to be a tweet, I didn’t want this to be an Instagram, I didn’t want this to be just a little impulsive reaction to what I was going through because I knew that I wanted to fight [for] a bigger purpose.
“Why just focus on selling records and videos and all that stuff when I could channel all that energy and help millions of people that are going through the same fight that I went through . . . that will allow people to say, “You know what? There is hope. There is inspiration. We’re not going to curl up in a ball, we’re going to stand up and we’re going to fight.’
“[It’s important] we have people like Fran [Drescher] and myself that are able to speak to not just the elders but also connect with the youth and talk about the ways of prevention and the ways that we could educate and inform.
“I want to focus on the Latino communities because I am Mexican and Native American. It’s very important for me to speak to my own communities because a lot of the time, our communities will not go to the doctor to get checked. The elders will say, ‘I’ll just use old remedies and traditional treatments.’ “
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COST VS. VALUE OF CANCER DRUGS
Sarah Donovan
Vice President, Avalere Health
“The purest demonstration of value is that patients are willing to pay for these drugs for themselves, for their families. There are a bunch of different factors that go into these decisions. But at times we even see patients willing to enter bankruptcy in order to pay for their therapies.
I think really understanding patients’ perspectives as they are going through their cancer journey is so important because a patient that maybe has a terminal diagnosis or has a set period of time that they are likely to live may be willing to endure really difficult side effects if it gives them more time with their family. These are those difficult things that you have to consider as a patient that you may not be considering if you are making decisions on a population basis. It’s very sensitive.”
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Leonard Lance
Republican Representative from New Jersey, a member of the Caucus on the Deadliest Cancers
“I’m involved in legislation that would require parity for oral medicines for cancers. That does not exist at the moment in this country. [These are] medicines that are taken orally and are much more convenient and cheaper. There should be the same [insurance] coverage as exists for more-traditional forms of [infusion-type] therapy.
“I don’t think there should be discrimination between the types of treatments. I think it would be less expensive and certainly I think it would be easier for patients.”
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William Hearl
Founder and chief executive, Immunomic Therapeutics
“My perspective on it has always been that if we figure out a way to cure a cancer, any cancer, we don’t have to worry about finding the money. The money will find us. The issue for us is making sure that we’re pursuing sound scientific principles that don’t endanger patients, and looking for ways to make people’s lives better.”
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IMMUNOTHERAPY, TARGETED THERAPIES
AND THE ROLE OF CLINICAL TRIALS
Vinay Prasad
Assisant Professor of Medicine, Oregon Health & Science University
“There’s a debate in oncology, as in all fields of medicine, which is that if something is highly promising, is it unethical to test that? I would say that if you look at the history of medicine, there have been many things people thought were sure things. Remember the ’90s’ autologous stem cell transplant for breast cancer? That was not tested in randomized studies. Insurers were vilified for not covering it. But by the early 2000s we finally did do randomized studies and that turned out not to work.
“The history of oncology is a history of missteps, missteps made by very thoughtful people, good people, on the basis of uncontrolled data. I would argue and others argue that it’s unethical not to do those studies, to continue to subject thousands and thousands of people to treatments that we really don’t know are better than alternatives.”
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Elaine Mardis
Co-executive director, Institute for Genomic Medicine at Nationwide Children’s Hospital in Columbus, Ohio
“Targeted therapies come from this general notion that cancer is a disease of the genome. There are changes that go on at the level of DNA that ultimately translate to proteins going wildly out of control so cells lose their capability to control their own growth and division. This is a basic definition of cancer.
“Through large-scale efforts to sequence the genome, we’ve identified many new targets for targeted therapy. This has been a bonanza, if you will, for pharmaceutical companies that are interested in pursuing the design of specific small chemicals that will shut down these modified proteins that are causing the cells to lose their ability to control their own growth and division.
“. . . We’re now coming up with rational approaches based on the genomics of individual tumors that combine a targeted therapy, a small-molecule inhibitor, with a checkpoint blockade so that you can have cell-killing from the targeted therapy followed by the immune checkpoint blockade coming in to bring up, again, a sensible, durable response. These are early trials, so we don’t know how successful they’re going to be. But some of the early reports are that these combination therapies are actually going to be quite effective.”
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Drew Pardoll
Professor of oncology, medicine, pathology and molecular biology and genetics,
John Hopkins University
“I like to think of [immunotherapy] like a car. To get from Point A to B with a car, you need three things: You need the gas pedal to go, but you also need the brakes, and it also helps to have a steering wheel. The immune system can steer itself very carefully and in a very focused way. In fact, it’s the genetic signatures in a cancer cell that the immune system can use to distinguish a cancer cell from a normal cell. . . . What we learned on the platform of basic immunology is that the problem was the parking brake was thrown on so you push on the gas and the car still doesn’t go.
“The revolution with checkpoint inhibition was mostly antibodies, but some drugs as well, [that] basically disabled the parking brake. With about 20 percent of all cancers – it’s much higher in melanoma, it’s much lower in pancreatic cancer, but across the board it’s probably about 20 percent of cancers – it’s like the car is sort of facing down the hill. All you have to do is disable one parking brake and the immune system goes after that tumor.
“There are two parking brakes for which there are FDA approvals. There are probably about 25 or 30 parking brakes and probably 25 or 30 accelerators. We think of precision immunotherapy as figuring out, for each of the patients, which of the parking brakes and which of the accelerators to combine. Almost all of the clinical trials, of which there are probably about a thousand that test combinations of immunotherapies, have a checkpoint inhibitor as part of that combination.”
Video link: Celebrity advocates
http://wapo.st/2gTZ1lf
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Video link: Growing up with cancer
http://wapo.st/2h3LUf3