Lifesaving tests for genes that increase breast cancer risk are still not available to Medicaid recipients in Alabama, despite a push from advocates who say the agency should make the screening available in all other states.
A study published last year in the journal Healthcare identified Alabama as the only Medicaid program in the country that does not cover testing for the two most well-known genes that increase breast cancer risk: BRCA1 and BRCA2. Although the state recently added coverage for testing at hospital labs, advocates say the program still doesn’t cover third-party labs that perform most of the testing for breast cancer genes.
Tina Hodge wrote a letter in October 2021 urging the state to add BRCA1 and BRCA2 testing coverage to Medicaid. The 52-year-old lives in Millbrook and runs the Carmichael Imaging Center at Montgomery Cancer Center. She also discovered in 2015 that she carried the BRCA2 gene.
“I think everyone deserves to have this test, not just people with private insurance,” Hodge said.
In his letter, Hodge said the lack of testing for people on Medicaid could lead to later diagnoses and worse outcomes for those who cannot afford private coverage.
Hodge didn’t expect to test positive when she offered to be a guinea pig for her employer while they were piloting a genetic counseling program. Her father and uncle had died of pancreatic cancer, but she had no family history of breast or ovarian cancer.
Hodge met with a genetic counselor and opted for preventative surgery to remove her ovaries and breasts after getting her results. As she nears the same age her father died, she will also undergo further screening for pancreatic cancer.
Lisa Schlager, vice president of public policy for Facing Our Risk of Cancer Empowered (FORCE), said her organization has done extensive research on genetic testing coverage.
“We did an analysis of what the different Medicaid programs cover,” Schlager said. “To my knowledge, Alabama is the worst offender. Basically, it’s the only state Medicaid program in the United States that doesn’t cover any kind of genetic testing for hereditary cancer or cancer risk.
Melanie Cleveland, spokeswoman for the Alabama Medicaid Agency, said the program now provides some coverage.
“Medicaid covers BRCA 1 and 2 genetic testing for outpatient hospital labs registered with Medicaid,” Cleveland wrote in an email. “Any of these facilities can charge for the tests.”
Schlager said the types of labs covered by the Alabama Medicaid program do not test for genetic cancer risk.
“Basically, the coverage is for a service that doesn’t exist,” Schlager said.
Alexis Heatherly, genetic counselor at UAB, said she most often uses Ambry Genetics, Invitae and GeneDX labs. Even though they’re not covered by Medicaid, she said many labs offer payment plans.
More women in Alabama die of breast cancer than the national average, according to the Kaiser Family Foundation. The disease kills black women at a higher rate than whites, despite lower diagnosis rates, studies show. Breast cancer was the second most diagnosed cancer in the state after lung cancer in 2021, according to the Alabama Department of Public Health.
Researchers identified the BRCA1 gene in 1994 and BRCA2 a year later. Genes cause about 5-10% of breast cancer cases and often cause disease in young women. Genes also increase the risk of ovarian and pancreatic cancers, which are rarer and more deadly than breast cancer.
Heatherly often meets with patients before they undergo genetic testing and said it can give them more knowledge about how best to approach treatment.
“Sometimes someone can be diagnosed with breast cancer and have two different options for surgery,” Heatherly said. “Maybe their providers offer a bilateral lumpectomy or mastectomy. They may have higher risks of a second primary breast cancer, so even though they may be eligible for this breast-sparing surgery like a lumpectomy, often these patients, if they come back positive, may choose to have this bilateral mastectomy .
The Affordable Care Act increased access to breast cancer gene testing and counseling for people with a family history of cancer or other risk factors. Medicare, the program for older Americans and people with disabilities, covers testing for some people diagnosed with cancer.
State Medicaid programs have different coverage requirements. Most cover both testing and genetic counseling for BRCA1, BRCA2, and Lynch syndrome, an inherited form of colorectal cancer. After North Carolina began covering genetic testing in 2021, Alabama was the last state without coverage for its Medicaid population. It is one of six states that does not offer testing for Lynch syndrome.
Schlager said state Medicaid programs that cover breast cancer gene screening tend to also cover the additional screening patients need to prevent advanced cancer. These procedures, which can include mammograms, MRIs and colonoscopies, can be much more expensive than genetic testing.
Alabama has a free breast and cervical cancer screening program for low-income women, but it only offers access to mammograms, Pap smears and clinical follow-up. It does not offer free or low-cost genetic testing.
Most Medicaid programs also cover genetic counseling in addition to testing, so patients understand their risks and take steps to prevent cancer. Heatherly said people with rare cancers in the family and those diagnosed with breast cancer at a young age could be candidates for genetic screening. Men may also have BRCA1 and BRCA2 genes which increase the risk of breast and pancreatic cancer in men.
Hodge said it’s important people know their options after testing positive. People can improve their health by increasing screening or scheduling preventative surgeries. The worst part is getting the test results and doing nothing, she said.
“What I tell a lot of people is once you know, you can’t ignore it,” Hodge said.