One of the network’s lead stories this morning was of the double mastectomy of Angelina Jolie. In light of evolving medical recommendations about the frequency of mammograms that women need and my own family history, I listened to see what the media’s messaging would be about what most of us real people should do.
Jolie’s decision to share her story is to be commended in terms of awareness. But her decision is not for everyone. Nor do most people have this information upon which to base a decision.
One of my sisters died at age 50 of breast cancer. Another sister died at 70 of breast cancer. My mother died of multiple myeoloma and from there my family history begins to get sketchy. I remember as a little girl over-hearing my mother and her sisters discuss another sister (my aunt) who’d had a breast removed in the 1950′s and not told anyone. The truth is we did not talk about “what” people died of. Culturally they were sick and died and this was a natural part of life. Religiously, it was explained as them having left for Glory.
Because of what I knew about my family history and more importantly because I worked for a foreign tourist office and had a Cadillac insurance policy, I began having mammograms twice a year and Songrams once per year. That seemed to meet the medical guidelines 20 years ago. About 5 years ago, my doctor recommended I see a Genetic Counselor and this is where we got stuck.
In normal cells, BRCA1 and BRCA2 are tumor suppressors. If, however, you have a mutation as Jolie did, these genes do not work and there is a likelihood of either a breast or ovarian cancer. But unlike Jolie, who had clear medical information about her mother and could afford the test, I could not furnish enough specific information about my family history for the Genetic Counselor. Her recommendation would have allowed me to have the test and have the insurance pay for it.
In search of information I discovered in sending out a message to younger family members that a) they had never heard of this test, and b) had little information about their branch of our family to help me put a broader medical picture together. My internist asked me what I would do with the information— which is another discussion entirely. I didn’t know.
The network’s medical news reader framed this story as the beginning of a discussion on Personalized Medicine. I think this is what freaked me out because I believe the future is now. What better evidence than this story being shared with the masses? Personalized Medicine suggests that technology or discovery will determine the level of medical care one receives to a degree that was not feasible before. And no, this did not begin with the planning and care that Angelina Jolie undertook over the course of a reported 3 months that included reconstructive surgery. Some version of this has always existed, just not called this. It scares me because I guess I believe that there is an unavoidable link between Personalized Medicine and poverty. I am afraid of where this is going.
What we know is that there seems to be a higher risk among Askenazi Jews and Scandinavians. Also there are presently no national guidelines about testing. The best advice being offered to the masses is that this test is not for everyone. This just seems lame to me.
On the other hand, there is a Supreme Court case challenging the validity of the BRCA1 and BRCA2 patents owned by the Myriad Genetics. One of the questions this case is asking is whether it is possible for a company to “own” a patent of something that occurs in nature. If Myriad’s patent is overturned the price of testing would be lowered.
I see the handwriting on the wall. Rather than look at one’s family and personal history for how to treat us, the medical profession is moving toward genomic tests about our future. What does one do if you don’t have information to support testing. What will we do with the information we learn from genetic tests. There are so many questions with no answers.