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A new website is encouraging women with breast cancer to “Know your rights. Know your options.”
The site, My Reconstruction Rights, offers women with breast cancer a wealth of information about their rights to reconstructive surgery following mastectomies.
The federal Women’s Health and Cancer Rights Act of 1998 requires group health insurance plans that cover mastectomies to also cover breast reconstruction surgeries.
The problem: many breast cancer patients don’t know about the law.
A survey conducted by the nonprofit Cancer Support Community found that 43 percent of women eligible for breast reconstruction did not receive information about their options when making treatment decisions.
In Washington, only a small percentage of breast cancer treatment plans included reconstructive surgeries. In 2009, there were 5,167 cases of invasive breast cancer. That same year, only 247 cases included breast reconstruction surgeries as part of the initial treatment plan, according to the state cancer registry.
“There’s a lack of education,” said Dr. Allen Gabriel, chief of plastic surgery at PeaceHealth Southwest Medical Center and Southwest Medical Group.
He hopes the new website will provide the information missing from the exam room.
The pink-filled website explains the federal law, answers common questions about the law and provides information on state laws regarding reconstruction surgery. The site also has resources to help patients find board-certified plastic surgeons and breast surgeons.
The site is the result of a failed effort to pass state legislation that would have required surgeons to notify breast cancer patients of their rights.
State Rep. Jim Moeller, D-Vancouver, sponsored House Bill 1101. The bill passed the Health Care and Wellness Committee but Moeller backed off before it made it much further.
Moeller said there was quite a bit of interest in the legislation itself, but representatives from interest groups like the American Cancer Society and Washington Hospital Association said they weren’t aware there was a problem. That made Moeller think education, rather than legislation, might be a better solution.
“The way (the bill) was written, it was almost like as you were being wheeled into the operating room, ‘Here’s your options,’” Moeller said. “That’s not the time it needs to be discussed.”
In addition, Gabriel said there was some hesitation about imposing requirements on physicians and interfering with how they provide care to their patients.
So Moeller, Gabriel and the interest groups went back to the drawing board and came up with the website.
The site, which launched the first of this month, is sponsored by the local nonprofit Pink Lemonade Project. Gabriel and his wife founded the advocacy group, which also offers educational retreats for women diagnosed with breast cancer.
They’re also creating postcards with the website’s information to be placed in the waiting rooms of physicians and nonprofit organizations.
Gabriel said they will track the number of women who receive breast reconstruction surgery after mastectomies for the next few years to see if the educational outreach is effective.
“Even though we didn’t pass the bill, it was still a victory for breast cancer patients because the awareness is out there and the education is out there now,” Gabriel said.