“ACLU Sues Over Patents on Breast Cancer Genes” – read the full CNN story here.
It will be very interesting to see how this case plays out as it could have a dramatic impact on thousands of diseases, including Spinal Muscular Atrophy (SMA). A 1980 U.S. Supreme Court decision about gene patenting paved the way for genetic related patents to be granted by the U.S. Patent and Trademark Office. Tests for the Breast Cancer gene, selected in the above lawsuit, SMA, and many other diseases have now been impacted by this decision. Athena Diagnostics owns the patent to the simple SMA DNA test. As a result, the test is controlled by Athena, as is the cost of the test, which means it is expensive. This has a real, direct impact on the prevalence of carrier screening and how diagnostic tests are performed — especially when you couple an expensive, protected test with the workings of a for-profit U.S. health insurance industry. Ultimately, it is argued, this has stalled the free flow of information, thus impacting the ability to make informed decisions about our health.
In hindsight, I know that the simple Athena SMA test was NOT ordered earlier for Gwendolyn for a variety of reasons, but one of them was definitely the high cost of the test and our doctor's knowledge that if she did not have SMA our insurance company would most likely not cover it. The positive SMA test dramatically changed our medical course of action and why that has to be justified to the insurance company is mind boggling. Not to mention that the majority of families diagnosed with SMA have NO prior family history or reason to proactively ask to be tested prenatally or post. Instead we rely on doctors to make recommendations, but doctors are being forced to weigh caution against cost. Gwendolyn was ultimately given the test, but with little time to spare given that her condition was deteriorating rapidly. Had we waited just two more weeks to perform this simple blood test, Gwendolyn would not be with us today. Plain and simple.
As an aside, even with a positive diagnosis, we still had to fight and fight and fight our insurance company, Health Net, to get them to pay for the full amount of the Athena SMA DNA test because they claimed we used an “out of network” provider. NEWS FLASH Health Net, Athena is the ONLY laboratory that performs the test. Trust me, having to fight Health Net for full payment of a simple DNA test that just diagnosed my daughter's terminal, degenerative disease was like rubbing salt in our wounds.
Anyway, I digress.
I know there are many arguments on both sides of this coin, pros and cons, and many factors at play. And, after all, many of these genes and tests would not have been discovered without the ingenuity of these research firms and universities and the use of their capital, both financial and intellectual. To be clear, I agree that these entities should somehow be compensated for their discoveries. But, there needs to be a middle ground between the current hyper-capitalistic approach and a more humane, people centric approach. After all, we all should be focused on saving lives and treating and curing diseases, not just what we — as individuals, organizations, and corporations — will get out of the deal.