Comedian Tig Notaro gained national attention in 2012 with a stand-up routine in which she mixed humor with deadly serious news; she had just been diagnosed with breast cancer. Notaro’s humor and courage are on full display in her August 2015 HBO special—she tells jokes while displaying her naked torso, a double mastectomy in full view.
As she explained to Rolling Stone: “It’s beyond being a woman, or a cancer survivor, or someone with a double mastectomy, no nipples, whatever it is—it’s just a human being and the human body. Healthy, sick, boobs, no boobs, cancer or no cancer. This is just life and this is my body, so relax.”
Many women struggle to come to terms with their body following mastectomy. Some prefer not to undergo further surgical treatment, but for a growing number, breast reconstruction is the answer. They may, however, worry over the cost of this elective surgery. But what they may not know is that there is a range of choices available to them—choices that the federal government insists they have.
What are my rights?
According to the United States Department of Labor, the Women’s Health and Cancer Rights Act of 1998 (WHCRA) requires that group health plans or insurance companies that offer mastectomy coverage “must also provide coverage for all stages of reconstruction of the breast on which the mastectomy was performed, surgery and reconstruction of the other breast to produce a symmetrical appearance, prostheses and treatment of physical complications of the mastectomy, including lymphedema.”
In other words, if you and your doctor agree on a post-mastectomy plan that empowers you to feel like you, you are entitled to be covered for that procedure. Importantly, this guarantee under US law is not limited to cancer survivors; it covers anyone who had a mastectomy that was covered by a group health or insurance plan. Nor does it impose a timetable.
Change employers? No problem. The Affordable Care Act of 2010 reinforces the WHCRA. If the new plan covers mastectomy, the new plan must cover your post-mastectomy treatments. Under state law, you may even be entitled to hospital stay coverage, depending on whether your employer’s group health plan provides coverage through an insurance company or self-insures; check your health plan’s Summary Plan Description.
WHCRA demands that employers provide full, explicit, annual notice of your rights. Take the time to read the four categories of coverage required under WHCRA and the details of the mastectomy-related benefits available to you under your plan.
Who can help me learn more?
Electing to have reconstructive procedures after a mastectomy is a right, and one that more women are choosing to exercise. Thanks to media coverage of stories like Angelina Jolie Pitt’s announcement of her double mastectomy in 2013, and the prominence of communities like RealSelf, more women are learning what their rights are—and they are sharing their knowledge, experiences, and feelings with each other.
RealSelf offers some interesting statistics based on community feedback; overall, 97% of women who’ve had a breast reconstruction say it was worth their time and money. They also stay consistently happy with the treatment. Five years after treatment, 96% still say the operation was worth it.
It appears that the more women learn about their options, realize breast reconstruction is covered by insurance, and communicate with each other about their experiences, the more they may find personal satisfaction by taking advantage of breast reconstruction procedures.
For the approximately 40,000 women expected to have a mastectomy this year, that’s no joke.
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