A decade ago, when Florida resident Ellen G., then in her 40’s, developed breast cancer, her private insurance company refused to pay for her to have genetic testing.
Because she could not afford to pay for the $3000 test herself, she didn’t know that she had a mutation in the BRCA1 gene, putting her at a higher risk than average not only for breast cancer, but for ovarian cancer as well.
Sadly, just a few weeks ago, she learned that she has stage IV ovarian cancer and will require radical surgery and chemotherapy.
It is very likely that Ellen’s lifespan will now be significantly shortened since less than 10 percent of patients experience long-term survival following standard treatment. This is because Stage IV ovarian cancer is difficult to completely remove with surgery and the currently available chemotherapy is unable to eradiate all of the remaining cancer.
Had Ellen known she was at a high risk for ovarian cancer through the genetic testing, she might have opted for a prophylactic oophorectomy (surgical removal of her ovaries).
Now, with the implementation of the Affordable Care Act (ACA), most women like Ellen will not have to make the same choice - to test or not.
Because the US government considers these tests to be preventive services, under ACA, private insurance plans will be required to cover all costs, including co-pays, for testing the breast cancer genes BRCA1 and BRCA2. This change will potentially save the lives of women who need the test.
Insurance plans that existed on or before March, 23, 2010, the date the Affordable Care Act was enacted, are considered “grandfathered” and therefore exempt from having to pay for the test. In 2012, about half of Americans who received health insurance from their employers were enrolled in grandfathered insurance plans.
Factors that put women at high risk for breast cancer, making them candidates for the test, include having two first degree relatives who have been diagnosed with breast cancer, with one developing the disease before age 50; or being of Ashkenazi Jewish heritage and having a first degree relative with breast or ovarian cancer.
The cost of testing can range from $300 to $3,000, depending on how much of the genome is analyzed.
One reason for the high price is that there is no competition. Myriad Genetics, a private corporation, owns the patent to the two genes as well as a monopoly on the method of testing.
On April 15th, the Supreme Court will hear oral arguments in a case arguing that human genes cannot be patented because they are classic products of nature. It remains to be seen how the US Supreme Court will rule, but in a similar case in Australia, the Federal Court ruled that isolated genetic material is patentable in Australia because the isolation involved requires skills and expertise that make it akin to manufacturing a product.
For more information: read more about the Supreme Court case for and against patenting genes
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