Insurance & Legal Issues
Genetic testing for cancer has opened a whole new area of insurance and legal issues - many of which are still up in the air, meaning that different locations, insurance companies, and healthcare providers address them differently. But don't let the uncertainty in these areas hold you back. Get answers to whatever questions you may have, and make sure all your concerns are addressed.
Legal Protection with Genetic Testing
The most important point to remember is that there are laws to protect you from discrimination if you get genetic testing for breast cancer or anything else.
The Genetic Information Non-Discrimination Act (GINA) prohibits discrimination on the basis of genetic information and the improper use of genetic information in health insurance and employment.
There are also advocacy groups that support your rights.
The Education & Awareness Requires Learning Young (EARLY) Act proposes a nationwide awareness and support campaign for women age 45 and under who may have a genetic predisposition to early breast cancer, breast cancer survivors, and doctors.
Insurance Coverage for Genetic Testing, Screening, and Preventive Actions
Many insurance companies now cover genetic testing for women with family histories that indicate increased risk. They also cover the recommended screening and preventive actions for women with high inherited breast cancer risk.
If your insurance company says it will not cover these things, don't give up! Here are some actions you can take to get insurance coverage:
- Ask your doctor or genetic counselor to appeal on your behalf and help you get coverage. Try to do this BEFORE you have the testing, screening, or treatment.
- Ask for a case manager at the insurance company to help you get the coverage you need.
- Keep communication with your insurance company open and keep bugging them. Persistence can pay off.
If none of these steps works, or if you don't have insurance, there are support organizations as well as public & government programs that can help.
