BRCA Choices Not Affordable for Many US Women

Roxanne Nelson

May 23, 2013

In This Article

Prohibitive Costs

But once a woman has received genetic counseling and opted for testing — then what?

Information is a scary thing if you can't do anything with it," said Schlager. And for some women, that is where they will reach an impasse.

 
Information is a scary thing if you can't do anything with it.
 

Many insurance companies will pay for preventive services, provided they meet certain criteria, such as those outlined by the NCCN. If an insurance company covers a mastectomy, whether prophylactic or for cancer treatment, it is obligated to cover the costs of the reconstructive surgery, owing to regulations in the Women's Health and Cancer Rights Act (WHCRA), which was signed into law in 1998.

But unlike Jolie, women may be limited in their choice of plastic surgeons, depending on their insurance coverage. They may only be able to use surgeons within their insurer's network, for example, and some plastic surgeons do not take insurance at all. It can also be difficult to find a surgeon willing to take Medicaid, owing to the very low reimbursement.

In addition, health insurance will generally not cover everything. There could be co-payments and incidentals that can bring out-of-pocket expenses into the 5-figure realm. Schlager, who underwent prophylactic mastectomy herself in the late 1990s, notes that even though she was covered under a good insurance policy, over the years she has incurred about $20,000 in out-of-pocket expenses.

The cost of a prophylactic mastectomy, with reconstruction, can run upwards of $100,000 when the fees from the hospital, anesthesia, surgeons, medications, and incidentals are factored in. Add in possible complications, such as an infection, and the cost can easily double. On Breastcancer.org, where women in the forum have compared notes, they report having to pay between $10,000 and $25,000 in co-payments or fees that their insurance company will not pick up. One noted that her insurer only paid $6,500 of the $28,000 it cost for reconstruction, while another reported $40,000 in out-of-pocket costs because of her 20% co-pay.

Even surveillance can be costly. Mammograms are usually covered, and there are often low-cost options for those, commented Heather MacDonald, MD, assistant professor of clinical obstetrics and gynecology and breast surgery at the University of Southern California (USC), in Los Angeles. "But MRIs [magnetic resonance images], which are also recommended, are very expensive, and it can be difficult getting insurers to pay for them."

For women without insurance, options become even slimmer, and most would be unable to afford surgery. Although not the only option, even surveillance and chemoprevention can be beyond the means of many.

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