Rare Cancer and the Cancer Patient Equity Act of 2021

About one in five people in the United States will be diagnosed with a rare cancer, which is a disease that is uncommon and for which information may be difficult to find. Many rare cancers are incurable or have few treatment options, and patients with rare cancers face significant challenges. A recent study found that patients with rare cancers face late or incorrect diagnosis, lack of clinical expertise, and lack of research interest and development of new therapies.

In recent years, biomarker (molecular) testing has emerged as a useful tool to aid in the identification of targeted therapies that will be most effective in treating a patient's specific cancer. Biomarker testing refers to the analysis of a specific mutation, gene alteration, or protein expression from a patient’s tissue or blood sample. Unfortunately, there are still barriers to the acceptance and integration of this testing into routine care. Barriers include effective communication (between providers and patients) about biomarker testing, identifying when to order the test and at what time, and insurance coverage.

Currently, few patients have access to biomarker testing. However, benefits of biomarker testing are known. Up to 40 percent of patients with cancer who receive molecular testing have a biomarker with a treatment that is currently available. This means patients are missing out on the opportunity to receive the right treatment for their disease.

Introduced in 2021, the Cancer Patient Equity Act seeks to provide coverage of certain cancer diagnostic and laboratory tests under Medicare, Medicaid, and the Children's Health Insurance Program. The bill specifically looks to mandate coverage for molecular testing at the time of diagnosis and develop an education and awareness program (in coordination with the Department of Health and Human Services and director of the National Human Genome Research Institute) on genomic testing, how it is used, and the role of genetic counselors. "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).

On Thursday, October 6, 2022, a congressional briefing was held to raise awareness of the bill and seek co-sponsors. Attendees heard from senators, representatives, and patient advocates—all stressing the importance of providing equitable access to molecular testing. The briefing was also a call to action for those on the call to reach out to their legislators to advocate and ask them to sign on to the bill.

For those who are interested in getting involved or looking to support the Cancer Patient Equity Act, you can reach out to your legislator and request them to sign on or vote for its passage. “Today’s message is clear; all patients need access to molecular testing,” said Phylicia Woods, Esq., cancer advocacy expert.

Learn more about molecular testing and cancer diagnostics, including available tools and resources for the multidisciplinary team, on ACCC’s website.