Butterfield Introduces Bipartisan Bill to Cover Cancer Molecular Testing and Educate on Genetic Counseling

Sep 30, 2021
Press Release

WASHINGTON, D.C. - This week, Congressman G. K. Butterfield (NC-01) and Congressman Gus Bilirakis (R-FL-12) introduced H.R. 5377, the Cancer Patient Equity Act, a bill to expand coverage for cancer molecular diagnostics, analysis, and testing. The bill also coordinates an education and awareness campaign on genetic testing and counseling.

“The Cancer Patient Equity Act will give patients access to cutting-edge, next-generation molecular diagnostic tests that can help identify an individual’s specific type of cancer and can inform treatment protocols. Determining whether a patient’s cancer is rare or whether it has traits that make it more or less responsive to available treatments can be a game-changer for patients. Too often patients do not have access to these tests unless their cancer reoccurs, at which point it may be too late. My bill will help ensure that patients and their physicians are empowered with actionable information from the beginning of their treatment,” said Congressman Butterfield.

"These targeted reforms will have a meaningful impact on accelerating the development of treatments for rare cancers and will remove bureaucratic hurdles that currently keep cancer patients from accessing diagnostic screening and effective treatments by qualified specialists," said Congressman Gus Bilirakis (R-FL-12). "Every cancer patient deserves the best chance of survival, and we must create a streamlined regulatory system to realize this important goal. Our bipartisan legislation will provide hope to millions of patients and families battling cancer and will lead to improved patient outcomes. It is an important step forward in the fight for equitable research and advancement of lifesaving treatments and cures."

The CPEA of Act 2021:

  • Requires Medicare, Medicaid, and the Children’s Health Insurance Program (CHIP) to cover molecular diagnostics at the time of a patient’s cancer diagnosis.

    • Oftentimes insurance only covers molecular diagnostics if an individual’s cancer reoccurs. At this point it may be too late to utilize the information learned.  Access to molecular diagnostics can help identify specific types of cancer, including if it is a rare cancer, and can help patients and their physicians develop better treatment plans from the onset.

  • Requires the Secretary of the U.S. Department of Health and Human Services to coordinate a national education and awareness plan on genetic testing and counseling.   Currently, many healthcare providers and members of the public do not have a clear understanding of how genetic testing can be used and how to use the information gained from such testing. 

Supporting Organizations (as of September 30, 2021):

  • SHEPHERD Foundation 

  • Association of Community Cancer Centers (ACCC)

  • Steven G Cancer Foundation

  • Focus on Rhabdo

  • Association for Clinical Oncology (ASCO)

  • Gabe’s Chemo Duck Program

  • Noah’s Bandage Project

  • Esophageal Cancer Awareness Association

  • Daniela Conte Foundation

  • Emmanuel Cancer Foundation

  • Friends of Cathryn Foundation

  • Children’s Cancer Therapy Development Institute

  • Gold Rush Cure Foundation

  • Summer’s Way Foundation

  • Family Reach

  • Maddie’s Promise

  • Brooke’s Blossoming Hope for Childhood Cancer Foundation

  • SebastianStrong

  • Tyler Robinson Foundation

  • The Neuroblastoma Children’s Cancer Society

  • Rally Foundation for Childhood Cancer Research

  • AliveAndKickn

  • CancerCare

  • Julia’s Grace Foundation

  • Jace Ward Tough2gether Against DIPG


  • Society of Gynecologic Oncology

  • Carson Leslie Foundation

  • Rein in Sarcoma

  • Smiles from Sean

  • Super Sam Foundation

  • Jeff Gordon Children’s Foundation

  • Sarcoma Foundation of America

  • Moffitt Cancer Center

  • Jack’s Angels

  • Cervivor

  • Smashing Walnuts