My husband and I were talking about the BRCA gene mutation the other day after a visit from a cousin. She has the gene, got breast cancer and had a double mastectomy. While she only had cancer in the one breast, the odds of developing it in the other are so high with the gene that she prohalactically chose to have the other breast removed as well.
I said I would instantly do the bilateral prophylactic mastectomy and reconstruction. If my insurance covered it. My husband asked if my insurance covered the test and I didn’t know.
Genetic testing is a relatively new field, but becoming more common. People are already familiar with paternity tests and prenatal tests and now with Angelina Jolie talking about her surgery, the BRCA test may run a close third.
BRCA was in the news before Jolie because it’s the topic of a case the ACLU argued in the US Supreme Court recently. A company (Myriad) has patented the BRCA 1 and BRCA 2 genes. The ACLU says these patents (2 of the 20,000 patented genes!) violate the constitution and prohibit free speech. I was shocked when I read about this case and saw that the gene patents keep scientists other than the owners from studying the gene without permission, controls what mutations they are allowed to study, and most importantly controls the market and the cost for all testing which must be done through the gene owners labs. That cost is $3,000 if your insurance company does not pay for it.
Again I dont know if my insurance company pays for this but you can bet I’ll ask my OB/GYN at my next appointment. I do know that ACA is supposed to cover the test when/if it is fully in effect in the US (repeal vote 37 – do I hear 38? Anyone? Anyone? Buehler?)
Gajillions of dollars are at stake in this formerly obscure Supreme Court case because of the potential to bill the federal government for the testing. And since its their gene they prohibit any cheaper labs from competing. Its called a monopoly. Myriad, the company with the BRCA patent saw their stock spike with Jolie’s unusually well-timed People Mag cover and NY Times Op-Ed.
If one were inclined to consipracy plots, one might speculate as to the decisions around Jolie’s outing herself a month before the SCOTUS decision on the patent case is due. One might even speculate that the Jolie/Pitt portfolio could feature Myriad stock, among a broad spectrum of other health related investments of course.
One might even go so far as to say that Myriad – and a lot of other folks – are very heavily invested in making sure that they continue to control the price of BRCA testing, soon be available through ACA. A PR campaign with a movie star fits the bill nicely.
I am very happy Jolie was able to get the BRCA test she wanted, choose her treatment, and afford her reconstruction. I would be a lot happier if her “brave narrative” included statements about how no one person (or corporation), should be able to restrict this kind of important research or testing by “owning” a human gene. I might be holding my breath on that one.
The ACLU should put out a call for their own fiesty star to out herself about her bilateral prophylactic mastectomy and reconstruction to make some noise about this patent case. Keeping my fingers crossed for the decision in June.