Apparently the Post-Gazette decided not to print my Letter to the Editor in which I correct many of the mistakes made by the reporter in the article from Friday. Here is my letter:
To the Editor:
Thank you for featuring a story about the Supreme Court’s unanimous decision against gene patenting on your front page this morning. This issue is important for thousands of people and their health, and it’s commendable that you fore-fronted this news.
I’d like to clarify a bit of the information in the article in order to honor my family members who have been affected by Hereditary Breast and Ovarian Cancer (HBOC). Understanding one’s own family history is crucial in protecting oneself from diseases like breast and ovarian cancer, and thus I want to make sure that my family history is represented correctly. I also want Pittsburgh readers to understand why it’s so important to consider BRCA testing, which will, due to the Supreme Court’s decision, hopefully be much more available and not cost prohibitive. Anyone who gets this test will have the power to actually prevent cancer – and now even more people will have access to the testing.
My paternal great-grandmother had some type of endometrial cancer (at the time, nearly 50 years ago, no diagnosis was given). She had three children. Two daughters both had breast and/or ovarian cancer; of their thee biological children, one has so far been diagnosed with breast cancer. My great-grandmother’s son, my grandfather, also died from cancer ten years ago. My grandfather had two sons – his younger son, my uncle, was BRCA2+ and died from pancreatic cancer a few years ago. His son is not positive for the gene mutation. His daughter, however, is BRCA2+ and was diagnosed with breast cancer at age 30. My father is BRCA2+, as are my brother and I. I was diagnosed with very early stage breast cancer in January of this year; I had a bilateral mastectomy a few weeks later and will be having a hysterectomy this summer to hopefully head off ovarian cancer.
Knowledge of my family history and BRCA status most certainly saved my life. Had I not known of my status, I would not have been having mammograms at my age (36), and my cancer would have been found at a much more advanced stage. The doctors found a significant amount of cancerous activity in my breast, but the surgery meant I did not need any further treatment. My BRCA status justified to my insurance company that mammograms were necessary before I turned 40; the cancer was caught four years earlier than it would have been without my BRCA knowledge.
Members of my family have spent total nearly $36,000 on BRCA testing, all of which went to Myriad, a company that prevented any of us from getting second opinions and also prevented any further research that could have helped us make decisions about whether to have drastic prophylactic procedures like mastectomies and hysterectomies. My husband’s family is BRCA1+; several years ago, we paid almost $4000 out-of-pocket to Myriad for my husband’s BRCA test. Had my husband not received an inheritance months before, we would not have been able to afford that test. Now, because we know his BRCA+ status, he is able to be screened for potentially deadly cancers.
The Supreme Court decision is important not only for me and my cousins who are all preventing cancer surgically, but for our children. There are four toddlers in our family right now, two teenagers, and two young adults under age 25, all who have not been BRCA tested – all of them are at risk for having this gene mutation, as their children will be. Because Myriad no longer holds the patent, research can now be done that will help our kids. Obviously, we don’t want any of them to get cancer, but we also don’t want them to have major surgeries, rife for complications and life-changing; a mastectomy and hysterectomy are not the same as knee surgery – these surgeries change your life and having them is a major decision that doesn’t always have a positive outcome.
Further research into HBOC, allowable now due to the Supreme Court’s decision, will allow our children to make even better decisions than we have been able to. Thank you again for bringing this news to your readers.