National Brain Tumor Society’s annual “Legislative Agenda” sets forth our priorities for public policy* in the coming year, identifying ways to affect change for the brain tumor community through congressional advocacy. These priorities also reflect the larger strategy and goals of the Organization and directly impact our ability to deliver on our vision to conquer and cure brain tumors – once and for all.
We revisit our Legislative Agenda every year to determine if updates are required based on the current, most pressing needs of the brain tumor community, as well as what’s happening in both Congress and the brain tumor research and development landscape. Additionally, our Legislative Agenda aims to build upon and support advocacy from prior years, including the successful passage of the Childhood Cancer STAR Act, 21st Century Cures Act, and Cancer Moonshot in recent years. These key successes in the 115th Congress means we are in the favorable position of being able to take on select new priorities than we have in past years.
Yet, the breadth of freshman representatives and senators landing on Capitol Hill means we will need to continue working extremely hard to introduce new members to the needs and priorities of the brain tumor community, while continuing to educate incumbents about the importance of our cause. This is especially true for members who are taking on new leadership roles of the various House and Senate committees and subcommittees that are important for getting legislation moved forward and to a vote (not to mention a new Speaker of the House!)
With the new 116th Congress now in session, we are building relationships on Capitol Hill, states, and local communities through our terrific volunteer advocates that are key to advancing issues important to brain tumor research and care.
For 2019, we are urging Congress to help change the status quo for brain tumor patients, survivors, and care partners by passing legislation that helps treatment development and health care delivery for brain tumor patients and their families.
Specifically, we ask Congress to prioritize policies that fall under two principal areas:
- Supporting Medical Research
- Enabling Adequate and Affordable Access to Care
Under the first category, we are continuing to request robust funding for federal agencies and programs that facilitate medical research, like the National Institutes of Health, the U.S. Food and Drug Administration, the National Cancer Institute, the Peer-Review Cancer Research Program of the Department of Defense, as well as the 21st Century Cures, Moonshot, and Childhood Cancer STAR Act programs. And, in 2019, we are also supporting new legislation called the “Clinical Treatment Act,” which breaks down barriers to clinical trial enrollment by ensuring coverage of routine medical costs associated with clinical trial participation for Medicaid recipients.
For the second category, we will continue to advocate for passage of the Cancer Drug Coverage Parity Act so that brain tumor patients can access and afford chemotherapy, regardless of how it is administered. Additionally, we have included the Palliative Care and Hospice Education and Training Act (PCHETA) on this year’s agenda to improve the quality and availability of palliative care for all patients. Finally, we will be encouraging Congress to improve access care to care at NCI designated cancer centers through the Affordable Care Act.
Read the agenda in its entirety here: 2019 NBTS Legislative Agenda
We hope this year’s Legislative Agenda will provide our volunteers and other supporters with critical information about key legislative areas we are involved in this year, helping everyone become a more informed and effective brain tumor advocate.
This is a living document and may change during the year as new legislative opportunities and challenges potentially arise. As always, we will communicate with brain tumor advocates throughout the year about any news and/or opportunities for action – so remember to sign-up to be a brain tumor advocate and get alerts. And, for a chance to really have an impact on National Brain Tumor Society’s public policy advocacy and Legislative Agenda, please join us at Head the Hill 2019.
*National Brain Tumor Society’s Legislative Agenda, however, does not reflect the entire breadth of work we do in public policy advocacy, as it does not include NBTS efforts to improve and advance regulatory policy and other executive branch policy matters, which require direct-to-agency advocacy. For example, in 2018 NBTS and other collaborators successfully advocated for $4 million in supplementary funding from the NCI for two special brain cancer research projects.