63 Anti-Genetic Discrimination Bill

http://www.usatoday.com/news/washington/2008-05-01-genetic-discrimination_N.htm

The Senate approved it 95-0. On May 1, 2008 the House approved it 414-1. President Bush is expected to sign it into law and "it" is an anti-genetic discrimination bill. The lone dissenter was Republican Ron Paul of Texas. Boo, Ron Paul! What principle could you have been standing up for that would make you vote against this legislation?

What does this anti-genetic discrimination bill mean? Here is what I've read coupled with my interpretation through filters of personal experience:

It means that insurance companies would not be allowed to set premiums or determine eligibility based on someone testing positive for BRCA1 or BRCA2 (the BReast CAncer genetic mutation that severely increases the odds of getting breast cancer and ovarian cancer). It means that employers wouldn't be allowed to use that information to affect hiring or firing decisions.

It means our legislation is taking another baby step towards protecting people so that the fear of what discrimination does to the pocketbook is removed from the equation of whether or not to seek genetic testing. It means more people getting tested helps scientists determine links sooner. It means that organizations are finding some success with trying to fight cancer by using politics to remove certain blockades.

To me, this bill means another spark of hope for finding a cure sooner rather than later.

Thank you, activists, for keeping up the struggle to make a positive difference. Thank you, policitians in Washington, for voting for something that makes sense. Thank you, opponents of the bill, for being less organized or not as well funded so that you lost this particular battle.

Now, you put-the-profit-into-the-shareholders'-pockets insurance companies, stop throwing up the blockades to people taking genetic tests! We NEED to study the connections so we can learn more about cancer causation and we DON'T need your concern about money getting in the way.

As you might recall from earlier postings, I took the BRCA test and my results were negative. Like most people, the causation of my breast cancer remains a mystery because this particular genetic mutation is not behind it.

A special committee had to meet to decide whether my insurance company would pay for it or not. They took over a month to decide so that I had to get the necessary blood for the test drawn a second time. The original sample would have been valid material for the test, but the insurance company wouldn't approve using the original sample because it was drawn before the purpose for the sample was approved so I had to submit to getting my blood drawn a second time. Talk about stupidity and inconvenience to the consumer for the sake of red tape!

The cost of the test was $3,150, but I paid $0 because I had already maxed out my deductible and out-of-pocket expenses for the year. I had to call my insurance company to get it straight, however, because somebody initially misplaced the piece of paper that said the test had been pre-approved so the EOB statement I first received from my insurance company indicated that the entire cost was to be my burden and I had to investigate with an agent for them to make the connection and reverse that billing decision.

Still, with all of that drama, that was a stack of minor irritations compared to the rigors of chemotherapy.

As a cancer survivor, I'm pretty much married to group health insurance for the rest of my life now. If I ever decided to be self-employed I would find the cost of health insurance unaffordably high. If I ever allowed my group coverage to lapse for too long of a period between jobs, I would find any new breast-cancer related expenses denied for at least the first year of new coverage as it would become a pre-existing condition. I could rant about the general poor state of the insurance system in my county another day.

For the moment I want to complain about how the same insurance company that allowed me to get the BRCA test because of my relatively young age at diagnosis has rejected the requests of two of my co-workers for the same test.

One co-workers has been through breast cancer, a metastatic recurrence, and has a mother who is a breast cancer survivor. The insurance company doesn't think this mother/daughter connection is enough to merit paying for the test. She has a young daughter and they wonder if she has the genetic mutation and if she has passed it on to her daughter or not. I have a second co-worker who has had breast cancer. She would like to know if she has the mutation because she wonders whether to have her ovaries removed or not. That's a big decision and it's hard to make if you don't know your BRCA status. $3150 is a lot of money to shell out of your own purse, however.

Maybe with this change in legislation preventing insurance premiums from being used as a penalty for people who test positive, then maybe more people will be inclined to take the test. Maybe if more people get tested then the economic laws of supply and demand will kick in and the cost per test will go down. Maybe if the cost per test goes down then insurance companies will be less reluctant to pay for the test.

Maybe. If.

I'm not going to focus on how bitter I feel about these "ifs" and "maybes" probably not going anywhere anytime soon. I'm going to focus today on the glimmer of hope it gives me that enough somebodys cared enough to get this issue going a direction that will utimately help people. And if anyone knows a valid strategy for twisting the arm of an insurance company to pay for my co-workers' BRCA tests, please pass the tips along.

Angela

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