WASHINGTON, D.C.—Early this morning Congress released a proposed FY 2023 funding deal that includes an increase of $2.5 billion for biomedical research funding at the National Institutes of Health (NIH), $408 million more for cancer research at the National Cancer Institute (NCI) and provides a funding boost to cancer prevention programs at the Centers for Disease Control and Prevention and the Office on Smoking and Health. The deal also includes a 5-year extension of additional federal funding for Medicaid in Puerto Rico and a permanent extension of additional Medicaid funding for the U.S. Territories and identifies an end-date for the Medicaid policy that allowed for continuous insurance coverage during the COVID public health emergency. The spending bill also includes a provision requiring FDA to create permanent guidance on the use of decentralized clinical trials, which would reduce travel burdens and decrease barriers for patient participation in those trials.
The bill does not include bipartisan measures to create a pathway for Medicare to cover multi-cancer early detection tests once the Food and Drug Administration approves their use and clinical benefit is shown or improve access to palliative care.
A statement from Lisa Lacasse, president of the American Cancer Society Cancer Action Network (ACS CAN) follows:
“Cancer research is one of the most promising fields of biomedical discovery and sustained year-over-year increases in federal research funding are critical to accelerating improvements in cancer prevention, detection and treatment. Federal cancer research funding has had a role in every major advance against the nearly 200 diseases we call cancer, including the foundational science behind many of the new targeted therapies that are improving patient experiences and outcomes. There are now 18 million cancer survivors alive in the U.S. thanks to past investments in cancer research. This budget will provide much needed additional resources to maximize those past investments and advance breakthroughs and innovations for years to come.
“ACS CAN also supports the bill’s inclusion of authorization of the Advanced Research Projects Agency for Health (ARPA-H). ARPA-H has the potential to accelerate medical research and bridge the gap between the lab and the bedside for a number of serious illnesses, including some of the hardest to treat cancers. We look forward to working collaboratively with the new agency and ensuring its resources are complementary to the National Cancer Institute.”
Access to Care and Addressing Health Disparities
“During the pandemic clinical trials quickly pivoted to using a variety of tools like telemedicine and delivering drugs to a patient’s home to protect them from unnecessary COVID risks. This greatly reduced travel burden and provided a window into what more patient-centric trials might look like, especially for underrepresented populations for whom transportation to and from trial sites might otherwise make participation too challenging. FDA is now charged with creating a roadmap for how we can continue such innovations, and critically how these tools can promote diverse trial participation. Going forward, drug sponsors will also be required to submit diversity action plans for their late-stage clinical trials. These are important first steps, but Congress has an opportunity to do even more in the next session by passing the DIVERSE trials act which would address ancillary costs when enrollees must travel, such as transportation and lodging, which for too long have been cost barriers for participation.
“A five-year extension of additional federal funding for Medicaid in Puerto Rico and a permanent extension of additional Medicaid funding for the U.S. Territories is essential for ensuring people facing cancer in these locations can access the quality, affordable coverage they need to treat their disease. Research shows individuals without access to health insurance are more likely to be diagnosed with cancer at a later stage when the disease is more costly to treat and survival less likely. While we urge Congress to find a permanent funding solution for Medicaid in Puerto Rico, ensuring the program can continue at current levels goes a long way toward reducing health disparities and saving more lives from cancer.
“The inclusion of more than 90 days’ notice and a gradual phase out of enhanced funding should provide states with the opportunity to properly notify and transition those individuals who will no longer be eligible for Medicaid coverage. ACS CAN will work with the Centers for Medicare and Medicaid Services to help ensure individuals who are disenrolled from Medicaid avoid disruptions in care. ACS CAN calls on states to put a plan in place to conduct comprehensive outreach to enrollees, enact safeguards to ensure no one’s coverage is wrongfully terminated and connect those who are no longer eligible for Medicaid to other coverage. ACS CAN will continue to advocate for Medicaid expansion in the 11 remaining states that have not yet expanded as individuals in these states are at high risk of losing coverage and becoming uninsured due to the insurance coverage gap.
Prevention and Patient Quality of Life
“The final package also provides small funding increases for programs dedicated to cancer prevention and early detection as well as for tobacco prevention and cessation. These programs, which include screenings for under or uninsured people for breast, cervical and colorectal cancer, remain underfunded however and will require additional future resources to save as many lives as possible from this disease.
“Additionally, we know that when symptom management is offered alongside curative treatment, research shows better outcomes and increased quality of life. Congress missed an opportunity to improve cancer patients’ experience throughout the continuum of their care when they failed to include the Palliative Care and Hospice Education Training Act, which would have improved patient access to this specialized care, in the final package.
Cancer Detection and Innovation
“The package fell short when it comes to prioritizing cancer detection and innovation. Diagnostic tests are important to our fight against cancer. They are often used to discern specific genetic markers, which then determine what kind of cancer treatment a patient might receive. Knowing these tests are accurate is critical to providing additional assurance that patients are getting the right care for their specific cancer. Since lawmakers didn’t act on diagnostic reform this session, the 118th Congress should prioritize legislation to modernize and harmonize regulatory standards for diagnostic tests to ensure patients and clinicians can make the most informed treatment decisions.
“In addition to discovery around cancer treatment and targeted therapy, there is promise in newer, innovative, multi-cancer screening technology that may have the potential to detect cancers at earlier stages. Congress missed an opportunity to pass bipartisan, bicameral legislation that would begin the important process of creating a pathway for Medicare coverage of such tests once the Food and Drug Administration approves their use and clinical benefit is shown.
“On behalf of the more than 1.9 million Americans who will be diagnosed with cancer this year, we appreciate Congress’ ongoing commitment to cancer research as well as efforts to protect access to care. We look forward to working with the incoming Congress to prioritize all of the ways in which we can improve the lives of cancer patients and their families.”