Kim Sport is a nuclear medicine technologist turned lawyer, and former Executive Counsel to the Chief Justice of the Louisiana Supreme Court. She’s also a three-time cancer survivor and the founder of Breastoration, which educates, assists and advocates for women facing mastectomies as a result of breast cancer. This is the first of her two-part series for ITC on breast reconstruction laws. Part 2 is here. Sport’s full bio follows this article.
PART 1: DUTY TO INFORM
My second breast cancer diagnosis in December of 2008 led to my decision to undergo a bilateral mastectomy with immediate reconstruction in my hometown of New Orleans at the Center for Restorative Breast Surgery. Following my series of surgeries, I learned about the “Alderman Study” which concluded that 7 of 10 of my fellow cancer survivors were living lives vastly different from mine – senselessly disfigured following their mastectomies, not by their own choosing, but rather because of a dereliction of duty on behalf of physicians to inform their patients that breast reconstruction was an insured option for them:
Many women are not informed about breast reconstruction at the time of their cancer diagnosis; and minorities are particularly at risk. African-Americans and Latinas, especially Spanish-speaking Latinas, have lower rates of breast reconstruction than whites but are less likely to see a plastic surgeon prior to mastectomy and express a significant desire to learn more about their reconstructive options.
-The Alderman Study
Incredibly, nearly half of the surgeons in the Alderman study felt patients were concerned about the cost of reconstruction, despite a 1998 federal law that mandated insurance coverage of breast reconstruction. This lack of information was especially egregious in Louisiana which has the highest mastectomy rate in the nation at 51% following a diagnosis of breast cancer and a minority population rate of 41%. I was appalled and decided to do something about it. No woman should ever suffer unnecessarily delayed and more complicated breast reconstruction surgeries or lifelong disfigurement following a mastectomy simply because of a lack of information.
With two other breast cancer survivors, I formed an organization called “Breastoration” to educate, financially assist and advocate on behalf of women facing mastectomies. Since 2011, Breastoration has educated thousands of women and has provided financial assistance for over 100 breast reconstruction surgeries in southeast Louisiana. Despite these successes, what sets Breastoration apart from other breast cancer organizations is Breastoration’s public policy efforts in Louisiana. This blog will discuss Louisiana’s strong “duty to inform” breast cancer patients of all of their options before any treatment can begin.
The issue of cost provides no plausible explanation for a physician’s failure to inform. The federal ‘‘Women’s Health and Cancer Rights Act of 1998’’ (WHCRA) provides that health issuers which offer medical and surgical benefits with respect to a mastectomy shall provide coverage for reconstruction and written notice of the availability of such coverage shall be delivered by the insurer to the participant upon enrollment and annually thereafter.
Louisiana was one of the first states to adopt this federal act and took it a step further with the passage of the 1999 “Oral and Written Summary of Breast Cancer Treatment Alternatives Law” which required physicians in Louisiana to inform breast cancer patients orally and in writing of all of their treatment options, including breast reconstruction, at the time of diagnosis. The law further required the development of a specific brochure of breast cancer treatment options to be reviewed every three years by the Louisiana Department of Health and Hospitals (DHH) and distributed by the Louisiana State Board of Medical Examiners (LSBME) to all physicians as a component of license renewal. Finally, the law required that physicians provide patients with a copy of the brochure and document the date and time when this was done in the patient’s medical record. Failure to comply would subject physicians to sanctions by the LSBME for unprofessional conduct.
Tragically, provisions of this law were fulfilled only once in the year 2000 and remained dormant for over 10 years before Breastoration “discovered” it in 2011. In cooperation with all of the statutory governmental entities, Breastoration redesigned and re-wrote what is now the 2014 Breast Cancer Treatment Alternatives brochure which includes a full panel on insurance coverage and breast reconstruction options. Importantly, the brochure is annually distributed to all Louisiana licensed physicians with reference to the law mandating their duty to inform.
Consider that from 2000 to 2012, approximately 36,000 new breast cancers were diagnosed in Louisiana and nearly 8,000 women died from the disease. Of the +/- 28,000 survivors, 14,280 underwent surgical mastectomies and nearly 10,000 were never told by their physician that breast reconstruction was an insured surgical option for them because our well-intentioned Louisiana law was not enforced. Enforcement and oversight of laws designed to inform and protect breast cancer patients is essential in all states. A law without enforcement is just good advice.
Please click here for Part 2.