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Public Policy Priorities
Review some of FORCE's current legislative and regulatory policy priorities that impact the hereditary cancer community.

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Policy Archive Successful Effort

Cancer Research Funding Preserved

Device Safety & Drug Development

Federal funding for cancer research has led to significant advances in cancer prevention, detection, diagnosis, treatment, and quality of life for patients. More than 14 million U.S. cancer survivors are alive today, largely because of the nation's commitment to cancer research. The main sources of cancer research funding in the U.S. are the National Institutes of Health (NIH), which includes the National Cancer Institute (NCI), and the Department of Defense (DoD) Congressionally Directed Medical Research Programs (CDMRP). FORCE is consistently involved in efforts to preserve or increase funding for these crucial programs. Following is an update on the 2018 initiative.

National Institutes of Health
Despite this progress, federal funding for cancer research has remained flat for more than a decade. When adjusted for inflation, the NIH budget was 20% lower in 2016 than a decade earlier. Although Congress recently boosted NIH funds, sustained, increased funding is needed to regain momentum after years of inadequate support. In October 2017, FORCE joined over 300 patient and professional groups in urging Congress to provide a $2 billion increase for the NIH in the FY 2018 budget, for a total funding level of $36 billion. The Senate approved this amount but the House included an increase of only $1.1 billion. Congress must reconcile the funding discrepancy in the final budget. Still, the final NIH budget will be an improvement over the 22% cut proposed by the White House administration. 

Congressionally Directed Medical Research Programs
The National Defense Authorization Act (NDAA) provides funding for DoD CDMRP research. The FY 2018 NDAA legislation initially approved by the Senate Armed Services Committee contained provisions that would jeopardize these programs by severely restricting, and perhaps even prohibiting the DoD from conducting research on important medical conditions. The House and Senate negotiated to reconcile the differences between their two versions of the NDAA, including the provisions related to medical research. Over half of the Senate and 180 Representatives signed letters urging Armed Service leaders to exclude the harmful language, citing the damage it would cause to the medical research progress. While the funding is part of the DoD budget, this research benefits millions of Americans in and outside of the military. 

FORCE is part of the Defense Health Research Consortium (DHRC). This group works to protect medical research conducted by the DoD's Congressionally Directed Medical Research Programs. Ultimately, thanks to the nationwide grassroots advocacy led by the DHRC and its allied organizations, the final 2018 National Defense Authorization Act did not include provisions restricting medical research at the Department of Defense.

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News Briefs

4/3/2024 - Submitted comments to Senator Cassidy and the HELP Committee in response to an RFI regarding oversight of clinical diagnostic tests, known as in vitro diagnostics (IVDs) and laboratory-developed tests (LDTs).

3/15/2024 - Joined the Coalition to Increase Access to Cancer Care (CIACC) in comments to House leadership on efforts to strengthen the Employee Retirement Income Security Act (ERISA) and emphasize the need to pass the Cancer Drug Parity Act.

3/1/2024 - Provided feedback to CMS on the Medicare Advantage Advanced Notice and accompanying Part D Redesign Program provisions aimed at reducing and managing beneficiary out-of-pocket costs in the Medicare Part D program.

2/29/2024 - Wrote sponsors to endorse the BENEFIT Act, which would require the FDA to include in the benefit-risk assessment framework of a new drug application how patient experience data was considered in the review process.

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