July 25th, 2007


Please help - Genetic Information Non-Discrimination Act 'on hold'

I know I have friends on my list that are in OK. I would like to ask you to help, as this is something very near and dear to me. To sum it up, there is a bill being passed around right now called GINA - The Genetic Information Non-Discrimination Act. GINA protects those of us who choose to get genetic testing from being discriminated against by employers, insurers or others based on our results.

To give you an example - I had genetic testing and was found to have a BRCA2 genetic mutation that increased my chance for breast cancer. Based on my family history, along with this mutation, there is nothing that really protects me from my insurer (who covered the test) deciding I was 'high-risk' and refusing to cover me were I to get breast cancer. My employer could have gotten that information and decided I wasn't a good bet for a long-term employee.

Thankfully, my insurance company was helpful, and while they did NOT pay for any of the genetic testing (which is damn expensive) they DID pay 100% of my decision to go ahead with prophylactic measures to avoid ovarian and breast cancer in the future. Many may not be so lucky, especially if they are in lower-income jobs with minimal health insurance.

Here is the information from FORCE (Facing our Risk for Cancer Empowered - a group for individuals who are high-risk for breast or other cancers):

I received the following update and alert on the Genetic Information
Nondiscrimination Act! Please read below and take the appropriate
action (if you live in Oklahoma call Senator Coburn and if you live
elsewhere call Senators Lott and McConnell). This is unbelievable that
we are so close yet so far. We need your help, please act today!!!!

Your phone calls to your senators resulted in almost all senators
agreeing to vote yes for GINA! But Senator Colburn of OK has placed a
hold on the bill, which means it cannot be voted on until he releases
his hold.

If you are from OK (please pass this on to OK residents too):
Call Senator Colburn and ask him to release his hold, and to vote YES
for GINA:
Tom Coburn (R-OK) Phone 202.224.5754
Fax 202.224.6008

Everyone else else, please call the Republican leadership in the Senate
- Trent Lott (MS), Republican Whip and Mitch McConnell (KY), Republican
Leader and tell them you want to see the bill come to the floor today,
and you'd like them to ask Senator Colburn to release his hold.
Trent Lott (R-MS) Phone 202.224.6253
Fax 202.224.2262
Mitch McConnell (R-KY) Phone 202.224.2541
Fax 202.224.2499

Thank you all for your work. I know this is a great deal to ask after
yesterday, but we are almost there. Please turn up the heat right away
so that the Senate can pass GINA!! After all, it passed it unanimously
twice before, and this time the language has been agreed on by all of
the members (Democrats and Republicans) of all of the committees of
jurisdiction in both the House and the Senate. We have a bipartisan
bill with unanimous support, except for this hold. Let's get it done!