I can't tell you how many times I've read that in the past month. While Angelina Jolie may have more advantages than most of us, the biggest advantage she had was not money, but access to people who provided her with good information about her options. This post is not going to be emotional, personal, sexy or funny. I just need to "bust" some myths about who pays for what when it comes to genetic testing, preventive surgery and breast reconstruction for high-risk women in the U.S.... before I start busting heads.
Genetic Testing. You've heard it costs $5,000. You've heard insurance won't pay for it. What are you supposed to do if you're not Ms. Moneybags? In fact, the cost varies quite a lot (I knew my mother's BRCA status, so I didn't need the full test. It was more like $500) and most insurance WILL pay for it -- even Medicaid in many states -- as long as you meet certain risk criteria. Medicare generally doesn't cover testing unless you've had cancer. It gets confusing -- even for the experts. A genetic counselor is your best start if you're worried. Financial assistance is also available through various organizations -- even Myriad Labs, the company responsible for the high cost of the test in the first place. Some people have asked me about 23andme.com which offers an at-home DNA spit test that includes the three most common BRCA mutations for $99. It may be useful in certain very specific situations, but please don't rely on it. The results are hard to interpret and may lead to false security or needless worry. It's no substitute for seeing a genetic counselor.
Pre-existing Conditions. Occasionally, an insurance company will claim if you have the genetic test and it's positive, you might not be covered if you develop cancer later, as it would be a pre-existing condition. Not true. GINA (The Genetic Information Nondiscrimination Act of 2008) prohibits discrimination in health coverage and employment due to genetic information. It's Federal law. HIPAA protects you as well.
Preventive Surgery. Not everyone with the BRCA mutation chooses surgery, but if you've decided it's the right path for you, you have options even if you're not Angelina Jolie. Again, most insurance, including Medicaid, will cover preventive surgery (mastectomy, oophorectomy/hysterectomy) if you're high risk. Even if you don't have cancer. Medicare has come through in some cases, but again, it's iffy. If your insurer pushes back, seek allies. The right doctor is crucial. Not all doctors fully understand the risks of BRCA. Be your own advocate -- arm yourself with facts, not rumors or conspiracy theories.
Breast Reconstruction. Many people assume that reconstruction after mastectomy is elective or cosmetic, and therefore not covered. Not true. According to the Women's Health and Cancer Rights Act of 1998 (WHCRA) your insurance must pay for reconstruction after mastectomy. Even if you didn't have cancer, if you or your employer changed insurance companies between mastectomy and reconstruction or if it's been years since your mastectomy. There are also assistance programs. Check out MyHopeChest.org, for one. If you want reconstruction, it's available to you. There is nothing frivolous, vain or shameful about wanting to feel like yourself. Even the Feds agree. If you choose NOT to go for reconstruction, insurance will pay for bras and prostheses. If you have reconstruction on one side, insurance covers making your other breast match.
For the most complete information about your options, I recommend FORCE (Facing Our Risk of Cancer Empowered). You'll find resources, help, a community of support and more straight dope than I could cram into one post.
Next time I'll share a personal story that'll knock your socks off (and maybe the rest of your clothes too).