BRCA Politics – My $.02

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Let me preface this by saying I realize how delayed this post is… especially given what a landmark month June was for medical genetics, and BRCA mutations in particular.  But hey, better late than never right?  I have finally surfaced after a few weeks of work madness and lovely R&R!

So when I was tested for a BRCA mutation back in 2008, I certainly didn’t know the political aspects of genetic testing, or many of the other implications as well, such as genetic discrimination.  Would it have made a difference in my wanting to get tested?  Probably not.  But it is all very fascinating to me.  Most of which I knew was from watching the documentary “In the Family,” a film about a young, single BRCA positive woman who considers her options, that came out that same year.  At one part in the movie she goes to the headquarters of Myriad Genetics, who at the time (and up until June) was the only company that could test for BRCA mutations.  It’s an interesting story how BRCA testing came to be… basically a race around the country to who could identify the genes first, and then when the researchers found it, due to no legal precedent, Myriad was actually allowed to patent the gene, meaning no other companies could offer BRCA testing.  I don’t pretend to be an expert on any of this, but it was always rather fascinating to me that a company could patent a gene… that’s MY messed up DNA!  How can you patent something that makes up the very nature of living things? Seemed crazy, and needless to say, there were many vocal people that felt the same way, and last month after a very and involved case, the Supreme Court agreed: You cannot patent naturally occurring DNA.

I am relieved with this ruling for the main reason that hopefully now BRCA testing (and all other genetic tests) will become a competitive market.  I, unlike others, have no personal issues with Myriad – this is a whole new world of medical genetics we are embarking on, and there are bound to be issues we have to work through.  I am grateful that I was able to be tested when I was.  However, there are many women out there that do not have such easy access, or may have financial issues that prevent them from being tested.  I am hoping that now that other companies will be allowed to offer the test, testing will be more accessible and perhaps less expensive  Especially now that BRCA mutations are really in the limelight with Angelina Jolie, it’s an exciting time for awareness, and I can only hope that every woman that needs/wants to be tested will be able to.  I will be very interested to see how this all plays out, even though I’m far past that part in my own personal journey.  I consider it a stepping stone in the advancement of medical genetics, and am glad we are moving on to the next stage.

On a related note, while I’m on the political/legal tangent, as well as things that seem obvious… interestingly, 2008, when I was tested, was also a big year for medical genetics with the passing of GINA.  I am SO incredibly grateful for this law that prevents genetic discrimination… from employers, from insurance companies, from so many places… I can’t be denied treatment or coverage because of my genes.  That seems to simple… not to hold things against people that they can’t change, but I suppose that defines everything that is wrong for every kind of discrimination.  Everything involved with medical genetics is still in such baby stages, but I am so glad that this part has already been addressed – I can’t imagine having to fight all that goes along with that while preparing for surgery as well.  It is a similar relief like the Women’s Health and Cancer Rights Act from ten years prior, which requires insurance to cover breast reconstruction after mastectomy.  So much of this seems so straightforward and logical, but I’m glad there are laws to back things up in this crazy world of ours!

Anyhow, that’s my short commentary on all the legal stuff.  I’m not a die-hard follower, but I did follow fairly closely and was relieved with the decision… like I said before, it just seemed so obvious. And I know it’s a big relief for the BRCA community as a whole; there’s enough other battles to fight!

In other news… it’s July 6.  How did that happen?!  Pre-op in 2 weeks already… surgery in exactly a month!  More on that later… and Happy (belated) 4th of July!