BRCA Choices Not Affordable for Many US Women

Roxanne Nelson

May 23, 2013

In This Article

Disparities and Dangers

Disparities in access to healthcare is not a new revelation — it is an issue that has been at the political forefront in the United States — and with no real solutions at hand, Jolie's story has served to amplify that rift.

There are an estimated 940,000 BRCA mutation–carriers living in the United States, but only about 10% are aware of their status, commented Lisa Schlager, vice president, Community Affairs and Public Policy at FORCE, a national nonprofit organization focused on hereditary breast and ovarian cancer. "While there are multiple factors involved, many of the women simply can't afford to find out," she told Medscape Medical News.

"That is unfortunate, as this is the direction where medicine is going," she commented in an interview. "We have the ability to use this information to customize and personalize care, and we are hindering this progress."

 
We have the ability to use this information to customize and personalize care, and we are hindering this progress.
 

Schlager believes that the huge publicity surrounding Jolie's story has helped bring genetic testing to the forefront, along with all of the gaps and inconsistencies. But there is also the danger that Jolie's story might tend to simplify how extensive the entire process of undergoing a prophylactic mastectomy actually is.

"We need to explain that this is not an easy surgery," she said. "This is not the same as getting a breast enhancement. Things can go wrong, there can be significant complications, and recovery can take a while."

It is also not a 1-step deal to remove and reconstruct the breast, and in fact, multiple surgeries may be needed during reconstruction, to reach the desired effect. "We don't want to scare women away, we just want them to go into it with their eyes open," she said.

Jolie is not the first celebrity who has spoken openly about opting for double mastectomies. Actress Christina Applegate was diagnosed with breast cancer at age 36, and after finding out that she was positive for the BRCA gene mutation, opted for a bilateral mastectomy. But she already had a cancer diagnosis, whereas Jolie's surgery was prophylactic.

The dilemma of whether or not to undergo the procedure is illustrated by a story from the United Kingdom in which a popular television presenter, Kristie Allstrop, has talked about her family history of breast cancer and her decision to opt for monitoring (for now), whereas her sister Fiona decided to undergo a double prophylactic mastectomy. Although Fiona had tested negative for the BRCA1 and BRCA2 genes, medical experts believed that, given the family's medical history, she probably carried a yet unidentified mutant gene, according to press reports.

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