Here’s another gap in Obamacare: It does not require coverage of testing for people who already have cancer. That brings two problems. If people who are diagnosed with cancer subsequently test positive for a cancer-causing mutation, that information can guide which tests to order for family members without cancer who may also be at risk. Also, women diagnosed with breast cancer may be at high risk for ovarian cancer and not know it without a genetic test. The advocacy organization FORCE (Facing Our Risk of Cancer Empowered) has been lobbying the U.S. Preventive Services Task Force (which ACA guidelines are based on) to get this policy changed.
Even in a state like Massachusetts, which has had mandated health care for many years, genetic counselors still worry about bridging treatment gaps for those in need. Kristen Shannon, a genetic counselor at Massachusetts General Hospital Cancer Center, has to scramble to find preventive care for some of her patients depending on their insurance. “We run around like chickens to fill in the holes,” she says. At MGH, it’s always possible to get care, but she says it takes a lot of creativity and ingenuity on behalf of the genetic counselor and a significant amount of time. She worries about patients who are tested at health centers where counselors or physicians who order tests directly are not as well versed at finding help.
Women in Michigan are lucky. There, Medicaid covers both genetic testing and the follow-up care. A woman who tests positive for a cancer-causing mutation is covered for risk-reducing surgery, imaging, or chemoprevention, whichever she chooses, although she would need prior authorization for the surgery. “We look at this as medically necessary standard of care, and have offered this type of coverage for a long time,” says Debbie Eggleston, chief medical consultant for Michigan Medicaid. Eggleston says her team is hoping a number of women will be eligible under Healthy Michigan Coverage when it begins in April 2014. The plan will cover uninsured individuals who make less than 133 percent of the federal poverty limit.
Suzanne Mahon, a genetic counselor at Saint Louis University, a Catholic institution in midtown St. Louis, runs a program that turns no one away. She writes grants to the Susan B. Komen foundation to cover her salary and seeks other grants and donations to fund patients in need. She finds ways to get mammograms and MRIs and enlist surgeons. The effort is so time-consuming that Mahon published a study in the Clinical Journal of Oncology Nursing a few months ago detailing how much time she spent on every task for one year. The actual time she spends with patients and their families is 41 percent.
For Mahon, it’s unethical to test for BRCA mutations unless she can offer follow-up care. She sees the cost of a bilateral mastectomy as a given. “People should realize that it’s far cheaper to do prophylactic surgery than it is to wait for a cancer diagnosis and then do that surgery anyway, along with treatment such as radiation or chemotherapy, which is far more damaging to the body, and which is the very thing genetic counselors work to prevent,” she says.
Money can be a touchy subject for Mahon’s patients. She tries to help them understand that if they test positive for a BRCA mutation, getting preventive services will be difficult but not impossible, and the process will probably be demeaning. This is a hard conversation to have, and Mahon says she’ll repeat her main points over and over during a visit but isn’t always sure the women process what she tells them. Mahon has helped nine such women this year.
“All care is not created equal,” she says. “It should be but it’s not.”
Reporting for this story was supported by a fellowship from the Association of Health Care Journalists, with assistance from the Commonwealth Fund.