Access to genetic counseling, testing, and follow-up care can be difficult for the rural and urban poor. This already underserved population cannot afford the time and travel such a visit would entail, or may not be aware of the services that genetic counselors can offer. Complicating matters, a positive result on a genetic test can necessitate drastic follow-up care, which is rarely covered for people on Medicare and Medicaid. Thus, some at high risk for certain cancers are basically stuck with the government’s version of “watchful waiting” because neither agency considers a positive result on a genetic test to be a diagnosis. Once a person actually gets cancer, Medicaid and Medicare coverage kicks in. This situation hits women the hardest. Testing and counseling for hereditary breast and ovarian cancer represent the most common reason for cancer genetic testing and visits to a genetic counselor. The risk for these cancers can be greatly reduced with surgery or drugs. So, a woman in her twenties who tests positive for both BRCA 1 and 2 mutations, and whose mother and grandmother developed breast cancer in their forties, may have a risk of breast and ovarian cancer topping 90 percent. Although, this risk is calculated for a person’s lifetime, these cancers strike women at a young age. The standard of care is a prophylactic bilateral mastectomy and removal of ovaries, unless you’re on Medicaid. Women in that situation will only have their surgery covered after a deadly cancer to strikes, which is the very thing that genetic counselors can prevent. Here’s the most significant finding: Much has been made at genetics conferences about how ill-prepared physicians are for the change in healthcare that personal genomics may bring—and that’s certainly true— but genetic tests are already available for major cancers, and these tests can save lives if people can gain access to genetic counselors and to the resulting medical care that may be needed. States won’t pay for preventive care but they will shell out hundreds of thousands of dollars once a person gets cancer. Not all women may choose surgery right away, but we all should have the luxury of being able to make that choice.
