In June 2019, during a campaign stop in Iowa, then-presidential candidate Joe Biden made a big promise. “If I get elected president,” he told a crowd of supporters, “you will see the most important thing that changes America: we are going to cure cancer.”
During His First 100 Days in the White House, President BidenJoe BidenBiden Will Meet Up Next Week With 6 GOP Senators, Arizona Secretary of State, Gets Security Intelligence On Election-Control Death Threats On The Money: Five Takeaways For Surprisingly Bad Jobs Report | GOP focuses on unemployment relief after moderate gains in April. MORE took a significant step toward that goal with the release of its discretionary funding application, including 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 research funding has the potential to lead to urgently needed treatments that can transform the lives of patients with serious diseases.
At the same time, the pursuit of a new program such as ARPA-H must be accompanied by immediate, bipartisan congressional action on existing research funding programs that are already making significant progress. A coordinated national strategy is the only way to increase survival and improve the quality of life of Americans fighting cancer.
Currently, about 700,000 Americans are living with a primary brain tumor and thousands more with metastatic brain cancer. There is no time to lose for these patients. That’s because the average survival rate for all malignant brain tumor patients is only 36 percent, and brain tumors are the number one killer in children and adolescents under the age of 19. Today, there are only five drugs and one device made specifically for brain cancer, and access to this small arsenal is prone to price and availability issues.
These are devastating statistics, but they also represent individual lives and stories. The Biden family knows this all too well, after losing Beau Biden in 2015 to glioblastoma, the most common form of brain cancer.
As for the Biden family, the fight against cancer – and especially brain cancer – is very personal to me. I am also the parent of a child who died of brain cancer. My son, Mason, died of medulloblastoma just a few weeks after his fifth birthday. I know the pain of loss and the passion to turn a terrible tragedy into a meaningful mission.
The memories of people who left too early are especially poignant at this time of year, as May is Brain Tumor Awareness Month, a time for people affected 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 head of community and government relations, is the largest advocacy organization for brain tumor patients. NBTS works with the executive branch and Congress every May and throughout the year to promote specific policies that will improve the lives of people 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 now do to address 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 the National Cancer Institute (NCI). With more resources, NIH and NCI can do the life-saving work of sharing disease data, cutting-edge models, and faster and better clinical trials.
Second, we need to expand existing funding sources at the Department of Defense (DOD) and ensure that brain cancer and brain tumors in children are listed as eligible subjects 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 focuses on the fight against brain cancer. This work is especially important because some studies have shown that there may be higher incidence of brain tumors among U.S. service workers and their families.
Finally, we need to build on the lessons learned from the COVID-19 pandemic. The Telehealth Modernization Act would make permanent part of the flexible policies enacted during the pandemic to ensure that patients can continue to have access to 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 twofold and provide a valuable (and rare) opportunity for collaboration down the aisle.
Congress should invest in innovation such as Biden’s ARPA-H program and take immediate, clear steps to fund the fight against cancer. A combined approach and a coordinated national strategy is worth remembering of the many Americans who have died, and of the many we can still save.
Danielle Leach is the head of community and government relations at the National Brain Tumor Society.