In June of 2019, on a campaign stop in Iowa, then-presidential candidate Joe Biden made a big promise. “If I’m elected president,” he told a crowd of supporters, “you’re going to see the single-most important thing that changes America: We’re gonna cure cancer.”
During his first 100 days in the White House, President Biden took an important step toward that goal with the release of his discretionary funding request, which included the creation of an Advanced Research Projects Agency for Health (ARPA-H) program with an initial focus on cancer. This forward-looking, innovative approach to funding for research could potentially lead to urgently-needed treatments that could transform the lives of patients with serious illnesses.
At the same time, pursuit of a new program like ARPA-H must be coupled with immediate, bipartisan congressional action on research funding programs that already exist and are already making important progress. A coordinated national strategy is the only way to increase survival rates and improve quality of life for Americans fighting cancer.
Right now, approximately 700,000 Americans are living with a primary brain tumor and thousands more are living with metastatic brain cancer. For these patients, there is no time to lose. That’s because the average survival rate for all malignant brain tumor patients is only 36 percent, and brain tumors are the number one cause of cancer death in children and young people under age 19. Today, there are only five drugs and one device specifically created for brain cancer and access to this small arsenal is susceptible to pricing and availability issues.
These are devastating statistics, but they also represent individual lives and stories. That’s something the Biden family knows all too well, having lost Beau Biden in 2015 to glioblastoma, the most common form of brain cancer.
Like it is for the Biden family, the fight against cancer — and especially brain cancer — is deeply personal for me. I am also the parent of a child who died of brain cancer. My son, Mason, died just a few weeks after his fifth birthday from medulloblastoma. I know the pain of loss and the passion of turning a terrible tragedy into a meaningful mission.
The memories of people gone too soon are especially poignant this time of year as May is Brain Tumor Awareness Month, a time for people impacted by brain tumors to share experiences, find support and advocate for change. Americans living with cancer, including brain tumors, need more than hope — they need the federal government to be strategic.
National Brain Tumor Society (NBTS), where I am chief of community & government relations, is the nation’s largest brain tumor patient advocacy organization. NBTS works with the executive branch and Congress every May and throughout the year to advance specific policies that will improve the lives of people living with brain tumors. Based on that experience, we know that, in addition to a well-implemented ARPA-H program, there are three things that the Biden administration and our elected officials in Congress can do right now to tackle cancer, and brain cancer in particular.
First, it is vital that we increase all existing funding sources at the National Institutes of Health (NIH) and National Cancer Institute (NCI). With more resources, NIH and NCI can do the life-saving work of disease data sharing, state-of-the-art modeling and faster and better clinical trials.
Secondly, we need to grow existing funding sources at the Department of Defense (DOD) and ensure that brain cancer and pediatric brain tumors are named as topics eligible for that funding. The Peer-Reviewed Cancer Research Program (PRCRP) at the DOD is the only program in the U.S. government outside of NIH that is dedicated to the fight against brain cancer. This work is especially important as some research has indicated possible higher incidences of brain tumors among U.S. service members and their families.
Finally, we need to build on the lessons learned from the COVID-19 pandemic. The Telehealth Modernization Act would make permanent some of the flexible policies established during the pandemic to ensure that patients are able to continue to access telehealth services, which not only ensure patient safety but also make access to treatment more equitable for a wide range of patients.
These efforts are important, and they are bipartisan, presenting a valuable (and rare) opportunity for collaboration across the aisle.
Congress should invest in innovation like Biden’s ARPA-H program and take immediate, straightforward steps to fund the fight against cancer. A combined approach and coordinated national strategy is worthy of the memory of the many Americans who have died, and the many more we can still save.
Danielle Leach is the chief of community & government relations at the National Brain Tumor Society.