Congratulations!
On April 24th, GINA passed the senate unanimously (95 to 0). Thank you for your calls, emails and faxes to your senators. [See press release here]
This has been a long battle. For our part in the battle, in addition to numerous calls and faxes, the MLD Foundation spent a full day visiting eight western senators in Washington DC last July lobbying for this bill. There were other foundations lobbying the other 42 senators. Our thanks to those who worked for over a dozen years before us to pave the way for GINA and to prevent the misuse of genetic information.
This is a victory for all of us with genetic conditions affecting our loved ones! Discrimination on the basis of genetic information had led individuals to shy away from genetic testing and to opt out of clinical trials for fear that their genetic information would be used against them. This lack of participation has slowed the research and development of treatments and beneficial drugs. GINA also protects against genetic discrimination for life and health insurance and in hiring/firing.
GINA already passed the House in 2007 so it should be a formality to pass it there again. The President has indicated his desire to sign GINA as soon as it hits his desk.
We will be back in Washington DC again this July for another day of lobbying. We will be coordinating the focus with the other foundations in the coming months.
More info: http://www.MLDfoundation.org/gina.html
Thank you again - your actions matter to our elected officials!
[Update 4/23/2008]
GINA is finally headed to the senate for a vote on April 24th! Please contact your senator and let him know you care how they vote - and that he/she should support GINA!
GINA is the Genetic Information Nondiscrimination Act [H.R. 493, S. 358], a bill that will prohibit discrimination on the basis of genetic information with respect to health insurance and employment. i.e., if you've been tested, that information cannot be used to deny you life or medical insurance, or employment.
As technology has evolved we are now able to better understand our personal genetic make up and gene testing is becoming much more commonplace. Perhaps you or a family member were tested to determine your MLD gene mutation. This bill prevents you from being discriminated against just because you have a particular genetic status. As an example, scientists are getting to the point where they can identify a pre-dispostion to a condition that does not affect you now, but might in the future. This legislation prevents discrimination now based on a future possibility - such as adult MLD, or even breast cancer.
We encourage you to read more here:
http://www.geneticalliance.org/ws_display.asp?filter=policy.leg.nondiscrim
and to contact your senators by phone or FAX here:
http://www.geneticalliance.org/ws_display.asp?filter=policy.action.gina.alert1
or by e-mail here:
http://www.senate.gov/general/contact_information/senators_cfm.cfm
H.R. 493, the Genetic Information Nondiscrimination Act (GINA)
Summary:
The Genetic Information Nondiscrimination Act (GINA) would prohibit insurers and employers from discriminating based solely on a person’s genetic information.
Title I protects an individual from insurance discrimination. Title I applies to employer-sponsored group health plans, health insurance issuers in the group and individual markets, Medigap insurance, and state and local non-federal governmental plans.
Title II prohibits the use of genetic information in employment decisions, such as hiring, firing, job assignments, and promotions. This prohibition extends to employers, unions, employment agencies, and labor-management training programs.
Status:
* Passed in the House of Representatives on April 25, 2007 by a vote of 420-3.
* The bill has 224 cosponsors, including 95 Republicans.
* Passed in the Senate in the 108th and 109th Congresses by votes of 95-0 and 98-0 respectively.
* McConnell voted for GINA both times. McConnell has just put a hold on the bill, so we cannot get a vote in the Senate.
* Coburn voted for GINA in the 109th. He was not in the Senate in the 108th. Coburn released his long standing hold on the bill in early December.
* The President has issued 3 Statement of Administration Policies in support of the bill.
* The bill also enjoys the support of 200+ organizations.
