Not all women eligible for breast cancer gene tests are getting them

Tests for BRCA1 and BRCA2 - gene mutations that raise the risk of breast and ovarian cancers - are not always done in U.S. women who are eligible to get them, a new study suggests.

Women diagnosed with breast cancer who were covered by Medicare but lived in areas with poor access to medical care appeared to have a hard time getting tested for the so-called breast cancer genes, researchers report in JAMA.

Testing is important because the results may affect treatment, said the study’s lead author, Amy Gross, a senior staff scientist at the Vanderbilt Institute for Clinical and Translational Research at the Vanderbilt University Medical Center in Nashville, Tennessee.

“If they’re found to be positive they’re at much increased risk of ovarian cancer and a second breast cancer,” Gross said. “And their relatives may also be at risk. This is an opportunity to prevent those cancers. There are lots of interventions and early detection strategies we know work. Without testing we can’t take advantage of those opportunities.”

Gross and her colleagues scrutinized the records of women who were participating in the Southern Community Cohort Study, which includes individuals from 12 southeastern U.S. states who get their medical care at community health centers.

Of the 49,642 female participants, 2,002 were diagnosed with breast cancer between the years 2000 and 2014, and 751 women were covered by Medicare part B, the federal government’s insurance program for people aged 65 years and older or who are disabled.

The women ranged in age at diagnosis from 37 to 87, and half were 64 or older when they were diagnosed with breast cancer. Younger women had Medicare coverage because they had some sort of disability, Gross noted. After analyzing the medical records, researchers found that none of the women who were eligible between 2000 and 2004 got tested for BRCA1 and BRCA2.

Although the numbers improved with time, they still remained low: 2 of 40 eligible women, representing 5 percent, got tested in the 2005 to 2009 period; 6 of 38 eligible women, or 15.8 percent, got tested in 2010 to 2014. “These are women who should absolutely be getting the tests done,” Gross said. “They’ve been diagnosed with cancer. They are all insured. And still somehow, they’re not receiving it.”

The study findings “are disheartening, but they’re not surprising,” said Timothy Rebbeck, a researcher at the Harvard T.H. Chan School of Public Health and the division of population sciences at the Dana Farber Cancer Institute in Boston. “This is exactly what you would expect given the situation with healthcare in the U.S. You could make the same argument for many other aspects of healthcare. It’s a healthcare system that leaves a lot of people behind.”

Tests like this “aren’t something that is an option or a luxury or an extra,” Rebbeck said.

The problem is not just with the healthcare system, said Dr. Deanna Attai, an assistant clinical professor of surgery at the David Geffen School of Medicine at the University of California, Los Angeles, and UCLA Health Burbank Breast Care.

“At the end of the day, this falls back on the doctors,” Attai said. “Unfortunately this is one of many studies showing we’re not doing a great job in identifying the patients who need to be tested. Physicians may not be aware that it’s covered. They may not be aware of the guidelines.”

But that’s no excuse, Attai said. “We’ve gotten to the point where we can’t keep all this stuff in our heads and that’s OK,” she added. “It’s fine, when a patient comes in, to pull up the guidelines on your computer and go through a checklist. You could potentially be saving lives.”

While doctors should be keeping up on which tests that should be done for whom, patients can be proactive, Attai added. “Don’t be afraid to ask if you think you’re qualified for a certain test,” she said. “Just ask. If you get a blank stare back, then go for a second opinion.”