Patients, survivors, care partners, and researchers from across the United States unite on Capitol Hill and put brain tumor research funding, treatment development, and patient care on Congress’s agenda
National Brain Tumor Society (NBTS), a leader in brain tumor patient advocacy, today brought more than 320 volunteer brain tumor advocates from all over the country to Capitol Hill as part of its annual “Head to the Hill” advocacy event. This record number of Head to the Hill participants traveled to Washington, D.C. from 37 states and held more than 200 meetings with members of Congress and their aides to advocate for the policy needs of brain tumor patients, survivors, and their care partners.
“Mobilizing our grassroots network of dedicated brain tumor advocates from across the country to come together and speak up for the brain tumor community with one, unified voice is a tremendous vehicle to educate and engage Congress in a discussion about the sober realities of a brain tumor diagnosis,” said David Arons, Chief Executive Officer, National Brain Tumor Society. “Brain tumor patients and survivors, along with those who love and care for them, are often thrust into an environment that is wholly inadequate and unprepared to serve their broad spectrum of needs. They are offered too few opportunities for effective treatment, potentially experience severe and lasting deficits as a result of these treatments, and regularly face financial and practical barriers to affordably access their care. By advancing our agenda, Congress can help reduce the burden of brain tumors through research and better healthcare.”
For 2019, NBTS and brain tumor advocates urged Congress to help change the status quo by passing legislation that helps develop new, more effective treatments and improves health care delivery for brain tumor patients and their families.
Specifically, Head to the Hill participants requested Congress provide robust funding for federal agencies and programs that facilitate medical research, including the National Institutes of Health ($41.6 billion for FY20), the National Cancer Institute ($6.522 billion for FY20), the Peer Reviewed Cancer Research Program of the Department of Defense ($120 million for FY20, with brain cancer and pediatric brain tumors included as diseases eligible for funding), as well as for the Childhood Cancer STAR Act ($30 million in FY20).
Beyond appropriations, volunteer advocates and NBTS staff also asked for support of the Palliative Care and Hospice Education and Training Act (PCHETA, H.R. 647) to improve the quality and availability of palliative care for all patients.
“Head to the Hill is always the most empowering two days of the year for me,’” said Beth Finn, a volunteer advocate from Pennsylvania. “It’s my opportunity to speak up for the brain tumor community and tell our elected officials what I want from them. It’s also always energizing to reunite with my brain tumor family, many of whom I only see once a year at Head to the Hill!”
In addition to their congressional office visits, Head to the Hill participants were joined by Connecticut Senator Chris Murphy, who remarked on the importance of grassroots advocacy during an empowering address to the assembled group.
Coinciding with Head to the Hill, NBTS also held its yearly Congressional Action Day to allow those who were unable to attend the event in D.C. to call, tweet, or email their members of Congress and amplify the voices of those on the Hill.
Nearly 87,000 Americans will receive a brain tumor diagnosis in 2019, and with only a 35 percent five-year survival rate for primary malignant brain tumors, an estimated 17,000 people will die because of brain cancer this year. Brain tumors are now the leading cause of cancer-related death in children 19-years old and younger, accounting for three out of every 10 cancer deaths. More so than any other cancer, a brain tumor can have life-altering psychological, cognitive, behavioral, and physical effects. There are no known prevention or early detection methods, few available treatments, and there is no cure.
About National Brain Tumor Society
National Brain Tumor Society invests in, mobilizes, and unites the brain tumor community to discover a cure, deliver effective treatments, and advocate for patients and care partners. We are the largest patient advocacy non-profit solely dedicated to the brain tumor community and a leading thought leader in the neuro-oncology field. Headquartered in Newton, Massachusetts, our organization raises funds to invest in accelerating brain tumor treatments, prepare the community to navigate their unique brain tumor experience, and convene stakeholders while changing public policy to improve the lives and survival of brain tumor patients. Visit us at https://braintumor.org.