Do you have cancer family history? Proposed Medicare bill seeks to expand genetic testing

Tracy Milgram will never forget the day doctors told her she had an 87% chance of getting cancer.

She was 21. Genetic testing showed she had a BRCA2 genetic mutation that significantly increases cancer risk.

Milgram had already undergone three lumpectomies (all were benign) since she first noticed a lump in her breast at 18. Knowing she had BRCA2 led to her getting checked every six months. She also underwent several surgeries, including a hysterectomy and a bilateral prophylactic mastectomy with reconstruction at 32. All of these preventive measures “have saved my life,” said Milgram.

Milgram, 40, is of Ashkenazi Jewish descent; 1 in 40 Ashkenazi Jewish women have a BRCA gene mutation, according to the Centers for Disease Control and Prevention. The mutation increases the risk of getting breast cancer at a young age, and puts them at higher likelihood for pancreatic, skin and colon cancer.

Up to 10% of all cancers can be caused by inherited genetic changes, according to the National Cancer Institute. Sometimes, doctors will recommend genetic testing to see if a person has an inherited gene mutation that makes them at higher risk for certain types of cancer. But genetic testing can get expensive, ranging from $300 to $5,000, depending on the test. And while many insurance policies cover tests, Medicare only covers genetic testing for people already diagnosed with cancer.

U.S. Rep. Debbie Wasserman Schultz, who is a breast cancer survivor, is trying to change that. The Broward Democrat recently co-sponsored bipartisan legislation in Congress to expand Medicare’s coverage to include guideline-recommended genetic testing for certain mutations that increase cancer risk. The bill would apply to those who have a personal or family history of hereditary cancer or a known hereditary cancer mutation in their family.

The bill would also provide coverage for follow-up services, including increased cancer screenings such as breast MRIs, more frequent colonoscopies and risk-reducing surgeries such as the removal of ovaries and fallopian tubes. The bill, known as The Reducing Hereditary Cancer Act, was reintroduced in the House and Senate on March 9 after dying in previous sessions.

“Logic would tell you that treating cancer is probably slightly more expensive and impactful on Medicare’s bottom line then the cost of genetic testing. ... It’s vital that we address cancer through early detection using all the tools available,” said Wasserman Schultz, during a news conference Tuesday at the University of Miami’s Sylvester Comprehensive Cancer Center, alongside a group of UM doctors.

“Genetic testing has improved dramatically in the last few years but, unfortunately, access to this testing has not always been equitable to all people,” said Dr. Mustafa Tekin, interim chair for the department of Human Genetics at UM’s Miller School of Medicine. “It’s important that Medicare recognize the need, not only for genetic testing, but to also provide an avenue for patients with a genetic disposition to access and take advantage of preventive surgeries and other services.”

Florida has nearly 5 million people enrolled in Medicare, the federal health insurance program for people 65 and over. Nationwide, 65 million people were enrolled in Medicare or Medicare Advantage plans as of September, according to the Centers for Medicare & Medicaid Services.

Dr. Carmen Calfa, a breast cancer oncologist and the medical co-director of Sylvester’s Cancer Survivorship program, said she’s seen firsthand how genetic testing can lead to more personalized care for patients and better outcomes.

In the case of Milgram, who is a Sylvester patient and the first to be treated at Sylvester’s recently opened Genetic Predisposition Syndrome Clinic, or GPS, her cancer risk is now less than 5%, said Calfa.

The clinic, which is supported by a gift from Eileen Youtie’s family, provides specialized care to people diagnosed with hereditary cancer, as well as those who are at higher risk for cancer due to inherited genetic mutations.

‘“Being given the opportunity to take charge of your own health is a ... gift that cannot be underestimated,” said Tekin.