By now, many of you will have read Angelina Jolie's powerful op-ed in the New York Times outlining her decision in February of this year to begin a series of surgeries (double mastectomy, eventual removal of her ovaries,etc.) as part of her effort to live with the BRCA gene mutation. If you haven't, you may read it here:http://www.nytimes.com/2013/05/14/opinion/my-medical-choice.html. And you might even follow up on the incredible outpouring of comments from readers at the same site.
I am not certain second-guessing Angelina Jolie on this is a worthwhile enterprise, but should you care to do so, she has been remarkably forthcoming on her treatment decisions at: http://www.pinklotusbreastcenter.com/.
Not every American woman is as wealthy or well-informed about the BRCA gene mutation and about what their health insurance might think about this genetic mutation — particularly at the time, like Angelina Jolie, when a woman is asymptomatic.
The path to the identification of the breast cancer type one susceptibility protein began in 1990 with the recognition that such a protein might exist and the 1994 actual identification and cloning of the protein. Angelina Jolie, seem from this perspective, is a fortunate woman to live in a time when she can look the BRCA gene mutation in the eye. Although her mother, Marcheline Bertrand, knew what was killing her by the time she died in 2007, she probably never faced the choices before her daughter now.
The capacity to search for genetic evidence of likely future disease has been difficult for our health insurance system to digest. In a system traditionally based on insurance underwriting designed to reward the insurers best skilled at sorting the sick from the well and the currently-well from the likely-to-become-sick, the advance of this kind of gene testing has been revolutionary.
Various statutory and regulatory attempts have been made to protect the genetically forecast-to-be-sick, such as the Genetic Information Nondisclosure Act of 2008 ("GINA") but, even then, most of the focus was on protecting gene information confidentiality and not on addressing the fears of women concerned about the insurance implications of being tested for BRCA1 and, later, BRCA2. Such fears have driven a number of women appropriate for the testing to forego it. You can read about one study that tried to quantify this here: http://cebp.aacrjournals.org/content/11/1/79.full.
I think of these women, and not Angelina Jolie, when I note that testing for the BRCA gene mutation, after appropriate screening, is included as a covered preventive service under the ACA. You can find the the Center for Consumer Insurance Information and Oversight ("CCIO") discussing counseling, screening, and testing for BRCA here: http://cciio.cms.gov/resources/factsheets/aca_implementation_faqs12.html This combined with constraints of pre-exisiting condition exclusions found in the ACA, should increase the number of women identified, counseled, and tested for BRCA gene mutations– whatever they decide to do now or later with the information.
So, here's to Angelina Jolie for telling her story in a straightforward, honest, and even graceful manner. Grace is playing the cards you are dealt in life, after all. As for the rest of us who are not independently wealthy movie stars, here's to the ACA's attempt — through a science-based determination to identify high value preventive services that should be available to as many as possible — to give those among us with the BRCA gene mutations an opportunity to live with grace as well.