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"My Medical Choice" -- Your Thoughts?

Angelina Jolie recently revealed in a NYT editorial that she underwent a preventative double mastectomy after learning she was at high risk for developing breast and ovarian cancer. 

Do you have a personal story to share about breast cancer or your reaction to this tough decision? We'd love to hear your thoughts in a Patch blog.
Dee Baucher May 18, 2013 at 11:50 AM
I am not used to Hollywood-types having the type of integrity and honesty, that Ms. Jolie displayed with her NY Times revelation. I commend her for having the courage to act proactively with surgical removal of her breasts, in addition to the planned removal of her ovaries. She lost her beloved mother to the disease, and she clearly understands the devastation that would befall her own children (if she were to develop the types of cancers that her genetic makeup render her vulnerable to). I agree with her decision, and hope that I would have the same strength, if confronted with the genetic evidence that she was able to have documented with the BRACA testing. Unfortunately, many women who would benefit in the same way, from advance knowledge about their genetic vulnerability to those cancers, are denied the ability to get the tests. The company that "owns" the test, by virtue of their assertion that they "own the patent" on that identified portion of our DNA, charge $3,000.00 for the test. That cost is too high for most women in the US to easily afford, and our health insurance typically refuses to cover the test for most women. There is currently a case before the US Supreme Court challenging the idea of a medical company owning our genes. Many of us are hopeful that the court will halt this company from claiming this patent, so that laboratories all over the country can provide the test to us inexpensively, and therefore it will be available to all who should have it. The costs for the type of very sophisticated plastic surgery/ breast reconstruction that Ms. Jolie underwent, are also extremely high. It is doubtful that insurance or Obamacare will provide coverage for that type of costly prophylactic surgery. Those are battles that women will need to fight in the future, when more women become informed about their personal risks and choices.
Dee Baucher May 18, 2013 at 12:37 PM
I write about the issue of the BRACA test, because I am someone who developed breast cancer, and who needed the test. Even though I already had breast cancer, the decision of whether to have a bilateral mastectomy (rather than just a removal of the cancer with a "lumpectomy" or the removal of only one, effected, breast) was dependent upon the results of that test. If I had a genetic marker that indicated I was likely to develop more breast cancers, there would be no reason to avoid having both breasts removed at once. Even though my doctors recognized the importance of getting this test done before surgical decisions were made, the insurance company was resistant to providing coverage for the test. There were many heated phone conversations with the insurance company, and many letters of documentation before I was finally allowed to have the test. The basic test for BRAC I and BRAC II (the 2 main genes identified) cost $3,000. However, there are even more specialized tests for the smaller BRAC genes (rare genes that are less common) that cost thousands of dollars extra, and would have been helpful because of my family history. I was not able to fight with the insurance company for permission to obtain those extra tests, since I was already weak and ill from the chemotherapy, at that time. It is not reasonable or acceptable for women to have to fight to get necessary tests performed, because of excessive charging for those tests, and resistance of the medical insurance companies to provide coverage to obtain them. This situation needs to be changed. I hope that Angelina Jolie's story will bring attention to this issue, and will help our Supreme Court to recognize the unfairness in allowing a company to lay claim on a "patent" of our genes. The main research to provide the exact mapping of our genes was provided by the "Human Genome Project", which was primarily paid for by the US taxpayers, via that extensive NIH study. The Myriad company did some further research to refine knowledge on the BRACA genes; but they should not be allowed a total patent which blocks all other US labs from performing tests on that same part of our DNA. That is unreasonable in terms of the amount of profit they are claiming, and unfair to US humans who should be able to claim ownership of their own DNA.

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