23 Apr 2011

Saturday Rants and Raves

I've just finished reading this news article from Calcutta, India: http://www.telegraphindia.com/1110423/jsp/nation/story_13891695.jsp
It describes a new initiative by the government to issue a credit card sized device which will contain certain of your genetic information.  Initially, it would have a list of drug allergies and a list of pre-dispositions to diseases like diabetes, heart disease and neuro-psychiatric disorders.  Most importantly though, the organization provides FREE genetic testing for inherited breast and ovarian cancer.
Where are we on this issue in North America?  Nowhere.
In Canada, in order to be tested for free for the BRCA1/2 gene mutation (testing positively increases your chances of developing the disease tenfold) a person requires that two primary relatives - i.e. a sister, mother, brother or father to have had a diagnosis of breast cancer and/or ovarian cancer or two primary relatives with ovarian cancer. 
In my own case, I am one of  9 children.  My mother died of breast cancer and I have ovarian cancer (two primary relatives).  Therefore, I was eligible to be genetically tested for free however, and happily for me, the results were negative.  Where did this leave my siblings?  In limbo.  As I tested negatively, they did not qualify for the same free testing privilege. 
It is extremely important to understand that it is possible that one or more (or none) of them carry these mutations even though my results were negative.  Should they want the testing done, they may request it on a fee basis - something in the order of thousands of dollars!
Some of my family members live in the USA where there is no free genetic testing no matter what your family history.  However, certain insurance companies will pick up part of the expense of the tests with a doctor's recommendation.  Otherwise, there too, one is looking at a cost in the thousands of dollars.
There is no accurate screening test for ovarian cancer.  There is no reliable blood test, no "pap-like" test and sadly, and most importantly in most cases, no obvious symptoms until the disease has advanced.  If one was aware of carrying the mutated gene(s) heightened surveillance and/or prophylactic intervention is possible.
If India, which is long-considered to be a third world nation with a population of 1.2 BILLION people, sees the wisdom in free screening for the most aggressive and predictable pre-dispositions to ovarian cancer, why can't we? 
Noted for our focus on the bottom line, think of the money - not to mention  the lives - this awareness could save.

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