Bipartisan Cancer Patient Equity Act (CPEA 2021) H.R.5377 Introduced by Rep. Butterfield (D-NC-01) and Rep. Bilirakis (R-FL-12)

Advocacy Campaign Success of SHEPHERD Foundation on Behalf of Rare Cancer Patients

Cision Pressier


Sep 28, 2021, 14:32 ET

WASHINGTON, Sept. 28, 2021 /PRNewswire/ — Congressmen G. K. Butterfield (D-NC-01) and Gus Bilirakis (R-FL-12), the driving political forces behind the realization of the Cancer Patient Equity Act (CPEA 2021), have been instrumental champions of the SHEPHERD Foundation’s “Rare isn’t Rare” Advocacy Campaign and bringing this impactful legislation to fruition. The SHEPHERD Foundation, a D.C.-based non-profit focused on providing industry-wide change for rare cancer diagnoses, has been a leading voice for the rare cancer community, petitioning for additional funding, treatments, expanded coverage, and a broader scope of how rare cancer is defined. 

Despite 95% of cancer diagnoses being considered rare, patients with rare cancers face significant challenges compared to those with more “common” cancers, with far fewer treatment options. The Foundation has accelerated their efforts, over the last year, to generate awareness and support for this landmark policy proposal that will have life altering impacts on patients and families, including addressing gaps in understanding, research, data-sharing, and care for rare cancer patients. 

If passed, the Act will expand coverage for cancer molecular analysis and testing and encourage education and awareness.

“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,” – Congressman G. K. Butterfield (D-NC-01)

In addition to the crucial engagement of Congressmen G. K. Butterfield (D-NC-01) and Gus Bilirakis (R-FL-12), the Act has also garnered support from numerous organizations in the private and public sector, impressed by the tangible societal impacts of this legislation. 

Cancer is among the leading causes of death worldwide. Despite the seemingly common nature of cancer, one in three patients – over 500,000 Americans each year – are diagnosed with a rare form. Yet as of 2019, rare cancer patients accounted for almost 80% of those who lacked even one FDA-approved targeted therapy, and over five years, 75% of clinical trials did not include even one rare cancer by name. 

“Having rare cancer isn’t rare, although treatment, support, and care are. That’s why the SHEPHERD Foundation is spearheading change so that all patients may live,” said Catharine Young, Ph.D., Executive Director of the SHEPHERD Foundation. “This legislation would get us significantly closer to our goal of creating a healthcare and research system that is equitable for all patients regardless of their diagnosis; and of providing patients with equal access to information and treatment options tailored to their disease and experience. We are grateful for Reps. Butterfield and Bilirakis for their leadership in introducing this Act and for their commitment to saving lives.” 

“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.”

Specifically, the major provisions of the CPEA Act 2021 include: 

  • Molecular Diagnostics: Mandates coverage for molecular diagnostics and genetic counseling at the time of diagnosis for patients on Medicare, Medicaid and CHIP. Molecular diagnostics are a critical component of providing accurate diagnoses using modern methods for cancer classification and enabling the use of next-generation targeted therapies. Molecular diagnostics at the time of diagnosis is the single most powerful tool in improving outcomes and advancing the science and practice of treating cancer. Medicare and Medicaid already reimburse molecular diagnostics for recurrent and metastatic cancers, and this Act extends that coverage to all new cancer patients at the time of diagnosis. 
  • Education and Awareness: Coordinates an education and awareness program on genetic testing. Currently, many health providers as well as the general public do not have a full understanding of the current scope of molecular diagnostics, genomic testing, how it is used, their benefits for treatment and research or the role of genetic counselors. This bill will create an education and awareness programs in coordination with the Department of Health and Human Services and the Director of the National Human Genome Research Institute for physicians and the general public on what genomic testing is, how it is used, and the role of genetic counselors. It will also encourage the inclusion of the importance of molecular diagnostics at diagnosis and reoccurrence of cancer during graduate medical and continuing medical education.

This Act’s introduction is a major step for cancer patients that the legislation will need to advance through Congressional committees for passage and enactment. To help advance this Act and show your support, visit SHEPHERD Foundation’s Rare Cancer Toolkit to learn how to advocate and communicate with members of Congress. Getting active and loud coupled with persistence is key to turning this Act into law. Join the movement to revolutionize the rare cancer system at

SHEPHERD is on a mission to change the way rare cancer is treated. Through SHEPHERD Therapeutics and the SHEPHERD Foundation, we attack rare cancer from every angle, with the goal of saving millions of lives. SHEPHERD Therapeutics pursues drug development differently than any other company: using our precision-oncology platform, DELVE, we are moving beyond a single-target-based approach to identify complex and interconnected mechanisms responsible for drug response and resistance revealed in the human transcriptome, which inform the identification of promising potential treatments for specific cancers. The SHEPHERD Foundation is a non-profit fighting to generate industry-wide change related to rare cancer awareness and therapeutic availability. The Foundation drives transformative health care policy at the federal level, connects and advocates for rare cancer patients and their families, and ultimately aims to accelerate the availability of and access to rare cancer-related data, basic science, and therapies – to ensure that no patient is left to die. Visit to learn more and join the fight.

H.R.5377 (CPEA 2021) virtual press event will be held on September 30, 2021 (RARE CANCER DAY) 2PM ET

Media access for this event:

SHEPHERD Contacts:
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