Press Release

March 9, 2023
Bipartisan Legislation to Expand Genetic Cancer Testing Access Introduced in Congress

WASHINGTON — U.S. Senators Ben Cardin (D-Md.) and Lisa Murkowski (R-Ala.) and Reps. Debbie Wasserman Schultz (FL-25), Mariannette Miller-Meeks (IA-02), Elissa Slotkin (MI-07), and Larry Bucshon (IN-08) re-introduced bipartisan, bicameral legislation to expand access to lifesaving genetic testing to determine an individual’s risk of developing hereditary cancer.

The Reducing Hereditary Cancer Act is widely endorsed by patient advocacy organizations, academics, and medical institutions across the United States, including Facing Our Risk of Cancer Empowered (FORCE) and the National Comprehensive Cancer Network (NCCN). This bill would ensure that Medicare beneficiaries are able to access genetic cancer risk testing and take advantage of additional medically necessary, guideline-recommended screening and risk reducing interventions.

Under current law, Medicare only covers genetic testing for beneficiaries already diagnosed with cancer, regardless of family cancer history or a known genetic mutation in the family. This is a problem because knowledge of an inherited mutation can be lifesaving for an individual and their family members as it guides decisions regarding cancer screening and prevention.

These services are covered for Americans with private insurance and Medicaid, but unfortunately not Medicare. Lack of access to these lifesaving services exacerbate health disparities and adversely affect Medicare beneficiaries, Medicare, and the U.S. healthcare system as a whole. With access to more early detection, individuals would detect cancer earlier when it is more easily treated, better understand their personal cancer risks for multiple cancers, make informed decisions about the type and frequency of cancer screenings, and inform family members about their potential cancer risks.

“I discovered I had cancer at a young age, but I didn’t know how heavily genetics impacted my risk,” said Rep. Wasserman Schultz, who was diagnosed with breast cancer and the BRCA2 gene mutation at age 41 and after seven surgeries, is now more than fifteen years cancer-free. “It’s nonsensical that Medicare doesn’t allow individuals to access this inexpensive testing until they have received a potentially terminal cancer diagnosis. By expanding access to genetic testing, we empower an entire generation to learn their risk and take action before it’s too late.”

“We know preventive screening and early diagnosis can save lives, and individuals and families with a history of cancer genes who are covered by Medicare should be able to access testing and preventative surgeries. This legislation makes that possible. I initially introduced this legislation after hearing from an Alaskan, whose own experience with cancer in their family moved them to seek a diagnostic test. While they were fortunate enough to have the access they needed, I want to ensure all Alaskans have the same opportunity. That’s why I’m proud to join my colleagues in reintroducing this legislation. By improving early cancer screenings and diagnosis for individuals at a higher risk of developing the disease, we have a real opportunity to save lives,” said Sen. Murkowski.

“As a doctor, I know that one of the best ways to treat and beat cancer is early detection. Individuals on Medicare need to be able to access preventative healthcare services,” said Rep. Miller-Meeks. “Our Reducing Hereditary Cancer Act will allow Medicare to cover genetic testing, cancer screenings, and risk-reducing surgeries. I am proud to introduce this commonsense legislation to give patients access to the care they need to live better lives.”

“Genetic testing and preventive surgeries for hereditary cancers are key tools in reducing and mitigating cancer cases and deaths. It is past time that Medicare beneficiaries had access to this standard practice of care,” said Sen. Cardin. “We have an obligation to ensure individuals with a family risk of cancer can get key cancer screenings that can provide a competitive edge in the fight of their lives.”

“Hereditary cancers have impacted the lives of so many American families, including mine: I lost my mother to ovarian cancer in 2011 when she was 64 after she also survived breast cancer in her early 30s,” said Rep. Slotkin. “Before her, my grandmother died of ovarian cancer at age 39, when my mom was just a child. As things stand now, those who are most at risk of contracting cancer because of their genetic history – like my mom – often lack access to essential genetic screening and preventative services. This bill is a practical, bipartisan step that does something simple: expanding Medicare’s coverage of genetic testing and preventive treatment. It will save lives.

“During my time as a practicing physician, I saw firsthand the toll cancer takes on Hoosier patients and know just how critical early detection and prevention can be in the fight against this disease,” said Dr. Bucshon. “The Reducing Hereditary Cancer Act will help assist these efforts by increasing access to genetic tests, improving health outcomes for patients, and reducing overall health care costs. I am proud to introduce this bipartisan legislation to help facilitate access for patients and promote innovative efforts to combat hereditary cancers.”

This legislation will require coverage of guideline-recommended genetic testing for inherited mutations known to significantly increase cancer risk in two Medicare populations: (i) those with a known hereditary cancer mutation in their family, and (ii) those with a personal or family history suspicious for hereditary cancer. For Medicare beneficiaries who have an inherited mutation causing an increased risk of cancer, the bill will enable coverage of appropriate follow-up services: (i) increased cancer screening (e.g. breast MRIs, more frequent colonoscopies) and (ii) risk-reducing surgeries (e.g. removal of ovaries and fallopian tubes).

“There will be over 1.9 million new cases of cancer diagnosed in the U.S. this year. We don’t know why most people get cancer, but with appropriate genetic testing, we can identify those at high risk of hereditary cancers including breast, ovarian, colon, prostate, pancreatic and others. Use of guideline-recommended screening and preventive measures empowers these individuals to be proactive with their health, detecting cancer earlier when it is easier and less expensive to treat—or preventing the disease altogether,” said Lisa Schlager, Vice President of Public Policy at FORCE. Currently, Medicare beneficiaries lack access to these lifesaving services. “This legislation will remedy a critical Medicare coverage gap, ultimately saving lives and money while reducing health disparities.”

“Up to 10% of all cancers are caused by inherited genetic changes. Unfortunately, Medicare today does not cover all medically-necessary tests to screen for increased risk and also doesn’t cover interventions to reduce hereditary risk,” said Robert W. Carlson, MD, Chief Executive Officer of NCCN—a nonprofit alliance of leading cancer centers that publishes free, frequently-updated expert-consensus guidelines on genetic/familial risk reduction and other topics.

“Medicare beneficiaries deserve access to the same standard of preventive care and early detection as Americans with private insurance. We applaud the bipartisan sponsors of the ‘Reducing Hereditary Cancer Act’ for taking action to ensure Medicare recipients have equitable access to health care that follows the latest evidence-based guidelines. We are proud to join with FORCE and over 100 other leading cancer organizations to advocate for life-saving access to expert-recommended care. Genetic testing for people with familial risk of cancer, followed with appropriate screening and risk-reducing interventions, will save lives and avoid future costly treatments.”

The full text of the bill can be found here, and a one-pager is available here. A full list of supporting organizations can be found here.