Dear Speaker Pelosi, Leader McConnell, Leader McCarthy, and Leader Schumer:
The undersigned organizations, representing patients, medical researchers, physicians, survivors and their families, are pleased that important policies to increase diversity in clinical trials were included in the 21st Century Cures 2.0 concept paper recently released by Representatives Diana DeGette and Fred Upton. We encourage Congress to include proposals from Title IV of the Cures 2.0 concept paper in upcoming legislation to further address the COVID-19 public health crisis. These clinical trials policies are bipartisan, well vetted, and broadly supported in the community, leaving no reason for delay.
The COVID-19 public health crisis has highlighted existing disparities in our nation’s health care system. Clinical trials are an essential part of our health care delivery system. Despite the importance of diversity in clinical trials, racial and ethnic minorities, women, children, and rural populations remain vastly underrepresented in trials across the country. Diverse populations must be represented in clinical trials to help address inclusion issues throughout the research and delivery of treatments, and to ensure patient access to high-quality healthcare.
Clinical trials often provide the best treatment option for patients with life-threatening conditions and lack of coverage for routine care costs should not be a barrier to enrollment. As a result of the current public health crisis, families across the country are facing greater financial strain, making the need to ensure this barrier is not limiting patient access to clinical trials even more urgent.
Specifically, we urge leadership to include policy to provide Medicaid coverage of the routine care costs of clinical trials participation for patients with life-threatening conditions in every state. This critical protection is championed by Representatives Ben Ray Luján and Gus Bilirakis in the CLINICAL TREATMENT Act (H.R. 913).
Additionally, we support recommendations in the Cures 2.0 concept paper to improve demographic data, increase awareness and understanding of importance of trials, make clinicaltrials.gov more user friendly, and improve coordination between the Food and Drug Administration (FDA) and Centers for Medicare and Medicaid Services (CMS).
We appreciate your commitment to solutions as our nation faces new challenges. Thank you for your consideration of our requests.
Sincerely,
Alabama Cancer Congress Alliance for Patient Access
American Cancer Society: Cancer Action Network American Society for Radiation Oncology
Asian & Pacific Islander American Health Forum Association for Clinical Oncology
Association of American Cancer Institutes (AACI) Cancer Support Community
CancerCare
Children’s Cancer Cause
Coalition for Clinical Trials Awareness Deadliest Cancers Coalition
Delaware Society for Clinical Oncology Dermatology Nurse’ Association
Empire State Hematology & Oncology Society Esophageal Cancer Action Network
Fight Colorectal Cancer
Florida Society of Clinical Oncology
FORCE: Facing Our Risk of Cancer Empowered
Friends of Cancer Research
Georgia Society of Clinical Oncology
GO2 Foundation for Lung Cancer
Hadassah, The Women’s Zionist Organization of America, Inc. Hawaii Society of Clinical Oncology
HealthyWomen
Hepatitis B Foundation
Illinois Medical Oncology Society
Impetus – Let’s Get Started LLC
Indiana Oncology Society
International Myeloma Foundation
Iowa Oncology Society
Kansas Society of Clinical Oncology
Kiel Colon Cancer Foundation
Leukemia & Lymphoma Society
Livestrong
Lousiana Oncology Society
LUNGevity Foundation
Massachusetts Society of Clinical Oncology
Medical Oncology Association of Southern California, Inc. Michigan Society of Hematology and Oncology
Minnesota Society of Clinical Oncology
Mississippi Oncology Society
Missouri Oncology Society
Montana State Oncology Society
National Brain Tumor Society
National Comprehensive Cancer Network
National Marrow Donor Program/Be The Match
National Medical Association
Nebraska Oncology Society
Nevada Oncology Society
North Carolina Oncology Association
Northern New England Clinical Oncology Society
Oklahoma Society of Clinical Oncology
Ovarian Cancer Research Alliance
Pancreatic Cancer Action Network
Rocky Mountain Oncology Society
Society for Immunotherapy of Cancer
Society for Public Health Education
Society of Gynecologic Oncology
Society of Utah Medical Oncologists
Solve ME/CFS Initiative
South Carolina Oncology Society
Susan G. Komen
Tennessee Oncology Practice Society (TOPS)
Texas Society of Clinical Oncology
The Arizona Clinical Oncology Society
The Blue Hat Foundation
The Oncology Nursing Society
Triage Cancer
UsAgainstAlzheimer’s
Virginia Association of Hematologists and Oncologists
Washington Colon Cancer Stars
Watts HealthCare Corporation
West Virginia Oncology Society
Wisconsin Association of Hematology and Oncology WomenAgainstAlzheimer’s
WomenHeart: The National Coalition for Women with Heart Disease
