Experts urge Biden to expand access to therapies, patient genetics in cancer ‘moonshot’

Vice President Joe Biden unveiled his “moonshot” initiative against cancer Tuesday following a shout-out from President Obama during the State of the Union address. Biden said it’s time to “accelerate our efforts to progress towards a cure, and to unleash new discoveries and breakthroughs for other deadly diseases.”

Biden’s aides have already held a series of closed-door meetings with cancer researchers.

Read more: Biden lays out road map for his ‘moonshot’ against cancer

STAT asked experts inside and outside the cancer world what advice they would offer the vice president to help move his project forward.

Barrett Rollins: Share data from cancer patients
Otis Brawley: Use influence even after leaving office
Gary Gilliland: Make existing potentially curative treatments available to all
Austin Frakt: Invest in data infrastructure and access

By Barrett Rollins: I had the honor to be part of the contingent from the American Association for Cancer Research (AACR) that met last week with Vice President Biden’s staff. We proposed two efforts that could be accomplished in the near term and that could provide substantial advances against cancer. Both revolved around sharing data from cancer patients.

At Dana-Farber Cancer Institute, DNA from every patient’s tumor undergoes multigene panel testing as part of our Profile project. Using a technology known as next generation sequencing, we check for the presence of mutations in more than 300 genes. Other major cancer centers also use multigene panel testing for many of their patients. The results have uncovered amazing things about cancer, some of which have led to new treatments.

Most of this sequencing is being paid for by philanthropy and institutional dollars. That isn’t sustainable. The time is right for insurers to start paying for it. We recommended that the vice president ask the Centers for Medicare and Medicaid Services to consider reimbursing multigene panel sequencing for cancer. This would vastly increase the number of cancer patients who have their tumors sequenced.

The AACR got the attention of the vice president’s staff in part because of the association’s Project GENIE. Seven institutions are pooling their clinical sequencing data and all of the clinical data associated with it. Projects analyzing these data are already underway. But the AACR doesn’t have the money or the resources to do this on a national scale. The vice president and his office could influence the Office of the National Coordinator for Health Information Technology or other entity to build a repository for sequencing data from all around the country. This would rapidly move the needle in understanding cancer and treating it more effectively.

Today, detailed genomic information about cancer is available only from comprehensive cancer centers or from individuals who have the money to pay for sequencing their tumors. We need to democratize genomic information as it applies to cancer by expanding the number of cancer patients who have their tumor genes sequenced. The benefits of this kind of testing are already so manifest that it should be made available to everyone with cancer.

Barrett J. Rollins, MD, is the chief scientific officer at the Dana-Farber Cancer Institute and the Linde Family Professor of Medicine at Harvard Medical School.

Otis Brawley: Cancer has been with us for thousands of years. It will not be cured in a year’s time but will take concerted, long-term, sustained effort. That said, there are several things the vice president could do in the short term to improve cancer treatment and survival.

Gathering and analyzing data about large numbers of cancer patients could provide quick and important advances. The vice president could help overcome privacy laws that do relatively little to protect privacy but a lot to keep researchers from collecting meaningful data. HIPPA and other laws — or incorrect interpretations of them — prevent researchers from sharing genetic and other data. For example, a project called CancerLinQ, organized by the American Society of Clinical Oncology, aims to improve cancer care by gathering data from around the country. But real or perceived privacy issues, along with difficulties connecting disparate electronic health records, may scuttle it.

Logistic issues and less-than-optimal care account for far too many early deaths from cancer. In Atlanta, 7 percent of black women and 2 percent of white women diagnosed with early, low-stage breast cancer don’t get treated within one year of their diagnoses. The delays, which can affect survival, are often due to problems like inability to get to a treatment center, not being able to take time off of work, and other logistic issues. Twenty percent of women with breast cancer get less-than-optimal treatment; the percentages are even higher for other cancers.

“Moonshot” may be an appropriate description for the vice president’s initiative. When John F. Kennedy announced he wanted to put a man on the moon by the end of the decade, much of the engineering to do that already existed. What was needed was someone to put together all the pieces of the puzzle. Applying the science and discoveries that we already have to the American population could go a long way to preventing deaths from cancer.

Finally, it would be wonderful to see the vice president continue to be a champion for good science and clinical work after he leaves office. As someone who is liked and respected by both Democrats and Republicans, he has the opportunity and standing to provide American medicine and American science with guidance that is sorely needed.

Otis Brawley, MD, is the chief medical and scientific officer for the American Cancer Society and professor at Emory University.

By Gary Gilliland: It’s fantastic that the vice president has decided to launch a concerted effort to fight cancer. The timing is excellent, since we are at an inflection point in the way we think about cancer treatment.

This is a very different time than when President Nixon declared his war on cancer in 1971. We couldn’t see the light at the end of the tunnel then. Now we can.

Four or five years ago, there was little we could do for cancers like metastatic melanoma and metastatic lung cancer. Today, we are telling many patients that we can cure these diseases. This change was brought about largely because we have learned to harness the power of the immune system to attack cancer, just as it attacks foreign invaders like bacteria and viruses.

Drugs like pembrolizumab (Keytruda) — which was used to treat former President Jimmy Carter’s advanced melanoma — take the brakes off the immune system and let it go after tumors with relatively few side effects.

When I think about what the vice president could do in a relatively short time to fight cancer, it’s not about tumor sequencing or data sharing. There’s no question that these are really important and will lead to new insights, but they will take some time to pay off. Instead, I think a “moonshot” should aim to make the new, potentially curative therapies available to everyone with cancer, not just to those being treated at designated comprehensive cancer centers. We have these therapies; let’s get them out there.

With something as potentially devastating as cancer, which affects so many individuals and so many families, you don’t want to overpromise and underdeliver. But I truly believe that we have the opportunity to move forward quickly and have a more dramatic impact on cancer outcomes in the next few years than we have had in the last 50.

Gary Gilliland, MD, is the president and director of the Fred Hutchinson Cancer Research Center in Seattle.

By Austin Frakt: I would urge the vice president to invest in data infrastructure and access.

Researchers spend a shockingly large amount of time accessing, or trying to access, data they need to do their work. It can take many steps to obtain clinical or administrative data, sometimes even data that has been collected specifically for researchers to use. Having to take many steps to access data, or having to overcome barriers to do it, slows research. Beefing up data availability and data infrastructure and removing regulatory and other obstacles would speed up research. Because they would accelerate a wide range of work, these are useful steps even when specific research areas haven’t yet been defined. They would give researchers and research organizations more time to efficiently and effectively do actual research instead of dealing with red tape.

Some red tape provides important functions. For example, it’s essential that clinical trial or administrative data be handled carefully, especially when it contains personal information. But the requirements often go too far and the hurdles can take too long to clear, bringing research to a crawl.

For example, the Centers for Medicare and Medicaid Services recently began removing from the data they provide to researchers all records for patients with substance use disorder diagnoses. This makes it difficult to study the opioid crisis, the spread and treatment of hepatitis C (which disproportionately affects substance users), and a wide range of mental health care. This new barrier to data, which had been previously available, has derailed productive researchers who now must figure out new ways to conduct their work.

In my world, such data infrastructure issues are common. I’d be surprised if they aren’t just as common in cancer research as well.