Many women recovering from breast cancer are often faced with some confusing choices when it comes to breast reconstruction rights. A coalition called BRAVE wants to change all that.

BRAVE (Breast Restoration AdVocacy and Education) was started in 2013 when it became apparent that many women did not have easy access to info about their breast reconstruction rights. The coalition’s founder Christine Grogan, who had a deep knowledge of the breast restoration process through her work with companies like Pfizer, Allergan and KCI, knew that women needed a trusted resource to help them figure out this complicated part of recovery.

BRAVE reports that while one in eight women will be diagnosed with breast cancer, only 30 percent are aware that they have a right to reconstruction by federal law. To help raise awareness, the group has named March 21 as National Breast “Restoration” Day, an officially recognized date to promote education of restoration rights for all women.

“At the time BRAVE was founded there wasn’t a nonprofit that focused attention on breast restoration, also referred to as reconstruction,” said Grogan in a release. “BRAVE was started to help women know of their options after breast cancer removal so there could be a positive focus during the next phase of their journey. We call it ‘restoration’ since the end result is women restored to their best self, however they choose.”

Part of BRAVE’s mission is also getting doctors and plastic surgeons on board to help educate their patients.

“When I started my practice about 10 years ago, and I had done my breast fellowship, I was seeing in our state some of the issues we were facing with patients not being informed,” says BRAVE’s medical adviser Dr. Allen Gabriel, a plastic surgeon in Vancouver, Washington. “Over and over, I would see patients who had not had reconstruction, and they would come in and say, ‘I wish I would’ve had reconstruction. I didn’t know it was covered.’ ”

This year marks the fifth annual BRAVE Day, but it also is the 20th anniversary of the Women’s Health and Cancer Rights Act of 1998, the federal law that gave protection to patients choosing to have restoration following a mastectomy. It will be the biggest year yet for BRAVE’s expansion plans.

 

Related: Breast Reconstruction: Frequently Asked Questions.

 

“BRAVE got its 501(c)(3) a year ago, and we just started fundraising last year,” Grogan says. “It’s all been self-funded to this point, so this is our first going big.”

Next steps? They want to build awareness, but also adding “BRAVE centers” around the country, supportive plastic surgeons and doctors who want to be part of the network, educating patients on rights and helping them figure out options. Eventually, the organization would also like to provide financial assistance for women in need.

“We use ‘restoration’ instead of reconstruction, because you are encompassing surgical but you are also looking at patients who need external prostheses that should be covered,” Dr. Gabriel says. “For every woman, restoration means something different. We didn’t want it to be about surgery, but about education and advocacy to help us get the word out.”

BRAVE’s site offers information for anyone exploring options and rights, including a guide in Spanish. Breast cancer patients, survivors and supporting family members can go there to learn more. By federal law, insurance must cover breast restoration following surgery, which many women still do not know.

To learn more about BRAVE and your restoration rights, or how to become a medical practice that supports BRAVE, please visit bravecoalition.org.