{"id":14766,"date":"2013-05-20T10:00:57","date_gmt":"2013-05-20T14:00:57","guid":{"rendered":"http:\/\/pmedicine.org\/epatients\/?p=14766"},"modified":"2013-05-20T10:42:47","modified_gmt":"2013-05-20T14:42:47","slug":"angelina-jolie-brca1-public-health-patent-law-the-empowered-patient","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2013\/05\/angelina-jolie-brca1-public-health-patent-law-the-empowered-patient.html","title":{"rendered":"Angelina Jolie, BRCA1, Public Health, Patent Law — & the Empowered Patient"},"content":{"rendered":"

Going public recently with her story of a prophylactic double mastectomy after testing positive for BRCA1 (a gene linked to breast cancer) via an op-ed piece in the New York Times<\/a>, Angelina Jolie is clearly trying to get the message out that radical choices must sometimes be made in order to increase one’s chances of survival, chances of spending more years with family and friends, and continuing to do one’s work on this earth. She is seeking to advance the public health conversation, and to empower women to make a choice that may otherwise be frowned upon, by giving her surgeon carte blanche to blog about her surgeries<\/a> as well.<\/p>\n

The questions that came to mind immediately for me when I first heard about this story (via radio talk shows as I was driving to and from meetings) included: Isn’t that the gene that was patented? Isn’t that test incredibly expensive and probably not accessible to most women? How is this story relevant to most women?<\/p>\n

Later on, I was glad to see that I wasn’t the only one asking these questions. Marketplace<\/a> explored some of these issues in its coverage.<\/p>\n

Starting with the question of relevance to others, let me first note that Jolie’s piece is a terrific message of self-empowerment through knowledge. The problem is, a 1,000-word piece in the Times\u00a0<\/em>just cannot hope to be a comprehensive treatment of the issue. A blog post at the Times\u00a0<\/em>effectively acknowledged as much the next day, noting that not all relevant mutations are BRCA1 or BRCA2<\/a> and that prophylactic mastectomy is not right for all women with the genetic marker. Jolie’s piece did not delve deeply into her decisionmaking process, or into the emotional toll it must have taken on her and her family. She noted the option of having an oopherectomy (removal of the ovaries; the genetic markers also indicate a heightened risk of ovarian cancer) and noted that she opted not to pursue that path at this time. Others (including S4PM’s own Eve Harris … writing about a relative’s choice made several years ago, in another part of the world) have written about the potential for overuse of prophylactic mastectomies<\/a>\u00a0when watchful waiting, with or without oopherectomies, may be preferable. (Takeaway: It’s complicated.)<\/p>\n

Jolie’s strength in taking control of decisions about her health care is laudable; the next question to consider is whether her example is replicable by individuals without her resources.<\/p>\n

The price for the test is now about $4000, though most insurance that covers it yields an out of pocket cost to the patient of $100 (according to Myriad, the company that holds the patents). Experts outside the company have said that the test costs less than $200 to run (thus raising the question of whether insurance premiums for all should be raised, effectively, to underwrite Myriad’s bills for the test … just one of a gazillion microchoices that have to be made about insurance coverage which ultimately hit us all in the pocketbook).<\/p>\n

The test is only recommended for women with risk factors (family history, Ashkenazic Jewish heritage, etc.) — about 2% of women in the US per the CDC<\/a>.<\/p>\n

The patents for the BRCA1 and BRCA2 genes have been challenged, and the case was recently argued before the Supremes<\/a>.<\/p>\n

Two problems with the patent lock-in highlighted by the story on the appeal:<\/p>\n