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Bilirakis and Butterfield to Unveil Cancer Patient Equity Act During Virtual Press Conference on Rare Cancer Day

September 30, 2021
Press Release

Washington: D.C. – Representatives Gus Bilirakis (R-FL) and G.K. Butterfield (D-NC) will be participating in a virtual press conference with the SHEPHERD Foundation to unveil the Cancer Patient Equity Act (H.R. 5377).  The Act will allow for industry-wide change and will generate life-altering impacts for those grappling with a rare cancer diagnosis.  

“The targeted reforms in our bipartisan bill 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 Bilirakis. “Every cancer patient deserves the best chance of survival, and we must create a streamlined regulatory system and payment model 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.”

 Currently, very few insurance providers offer coverage for molecular diagnostics at the time of a cancer diagnosis.  The Cancer Patient Equity Act will change that by requiring Medicare, Medicaid and the Children’s Health Insurance Program (CHIP) to cover this form of precision medicine.  Gaining better data on each patient and the origins of his or her cancer is key to being able to improve that patient’s personal outcome but also to developing more effective treatments for other rare cancers in the future.  It will enable physicians to select targeted treatments that address the cause of specific cancers, improve treatment outcomes, reduce the use of costly and ineffective therapies, ensure all patients have access to the most effective treatments, and increase the availability of data related to cancers that have previously received very little attention or research.  The goal of this critical legislation is to advance the science and practice of treating cancer, which will save lives today and in the future.

 Other confirmed participants Include: Greg Simon, Former Director Cancer Moonshot and Former President of Biden Cancer Initiative, Dr. Giselle Sholler, M.D., Levine Children’s Cancer & Blood Disorders, Carolina’s Medical Center, and Dr. Patrick Hwu, M.D., President and CEO of Moffitt Cancer Center in Tampa, FL.

Date: Thursday, September 30th, 2021 (Rare Cancer Day)

Time: 2:00pm-2:45pm EST

Where: Zoom

All members of the media who wish to cover this event must submit a request to and register for the event with the below link.

Press Event Registration here