Wednesday, May 27, 2009

Myraid Out Of My Genes!

When patients get bad news from their doctors, they often seek second opinions before launching into frequently expensive, invasive, and painful treatments. But when I learned I was a carrier of the BRCA2 mutation, I wasn't able to access a second opinion. I couldn't send my blood out to another testing center for confirmation of the presence of the deleterious gene. Why? Because the company that tested my blood OWNS THE PATENT ON THE BRCA1 AND 2 GENES. You read that right. They don't own the patent on the technology behind the test; they own the gene.

The company in question, Myriad, based in Salt Lake City, Utah, is now being sued by the American Civil Liberties Union. The lawsuit, filed May 12, argues that gene patents are unconstitutional. In addition to hindering research, the patents allow Myriad to operate as a monopoly, setting the price of the gene test out of the reach of people who need it most. (The test costs about $3000; luckily, insurance covered most of the cost of my test because my father was already known to be a carrier.)

Needless to say, I'm thrilled about the turn of events. (Myraid Genetics had a table in the exhibits hall at the FORCE conference last week, and when a representative tried to strike up conversation with me, I snapped gleefully, "Oh! You are being sued!") Not only does the lawsuit put BRCA in the news (where, hopefully more people will learn about it and those with family histories will ask their doctors about it) but it also highlights the inequality in care available to poor and minority communities in this country. Even if I didn't have insurance, I, luckily, would have been able to afford the test. But there are so many other women out there for whom the test would be out of their financial reach. With so many uninsured women forgoing routine mammograms and other crucial screening tests, breast cancer too often kills in communities whose barriers to care are the highest. If the ACLU sucessfully argues that Myriad's gene patents are illegal, competition can drive down cost and more families can access the test, allowing them make important decisions about their current and future health.

These patents, and the lawsuit, impact everyone who is affected by hereditary cancer. You can read much more about the ACLU's efforts here. If you feel passionately that companies should not have the right to own part of the human genome, consider signing this message of support. And check out the thoughts of Joanna Rudnick, director of the documentary In the Family, over at Huffington Post. Or, at the very least, watch this video below.

1 comment:

  1. Yes!

    I just learned about this recently and at first was does one patent a gene???

    Then I got pissed. How could this happen???

    Great post, fab info -- good for you :D