Those words I remember very vividly, my boyfriend told me this while I was undergoing chemotherapy. At the time I didn’t know what it would all entail for us, for me as his “new” girlfriend he had just begun bringing home, for his family, and for their future. We went through chemotherapy together, she watched my hair fall out first before hers, we shared in the nausea that plagued us, the constant struggle to keep food down, and we looked at the countless medications we took that equally wore us out but somehow kept us awake. I got off chemotherapy, she remains on it now even, but the bond is still there.
We just talked last weekend about her treatments and how insurance companies are getting in the way of a genetic test that should be done to see her risk on the other breast. That’s something that needs to be discussed as a nation, not the statistics of how many women are diagnosed, not just the treatments, not just “save the tatas”. We need to discuss the fact that insurance companies can halt procedures while getting treatment. This is more than just her recovery, it’s the fact that there is a possibility of genetic mutation that could have been passed to her and her siblings, my future children could have the mutation, and the insurance will not pay to see if it is there.
The BRCA gene (both 1 and 2) is what the gene mutation is called; someone is susceptible if a family member has had breast cancer or ovarian cancer. She comes from a family with a history of breast cancer, her oncologist recommended that the testing be done before they perform her mastectomy to determine if they should take both breasts at once. She had the testing done, but with her insurance she was informed that she needed two aunts with breast cancer to qualify for them to pay for the testing results.
Yes, that is right, the insurance first allowed the test to be done, then AFTER THE FACT, changed their minds. They have the results for her, but the only way she will see them is if she pays around 4 thousand dollars. When she told me this, I could not even comprehend that the insurance would not give them up. She will not be able to tell her son and I if our children will for certain have the gene, but the odds are already stacked as I hold the mutated gene.
That simple genetic test could mean such a different outcome in our years to follow, it could show if my boyfriend has the gene or if we’re passing it along without knowing. The test could tell her sister if she’s at high risk as well as if her nieces have the gene. Yet the insurance company will not give the results to her, even though it could help her entire family see if the mutation is there. My family has known about the mutated gene for a few years now in our family, it raises risks around 10-15% of developing breast cancer or ovarian cancer, but it wasn’t the end of the world. There’s no ill side effects of just finding out, it was one small tube of blood for the testing, but insurance companies only see dollar signs. The insurance companies see dollar signs when looking at everything though, from a genetic test to see if you could have a greater chance of breast cancer, to the treatment in the cancer once you have it.