The following article will appear in an upcoming issue of the Alpha-1 News. Please enjoy this advance copy. Alpha-1 Association copyrights apply.
On two recent beautiful spring days, the "Ayes" went up against the "Nays." On their home fields, fans all around the country waited to hear word. Some trolled the Internet for any bit of news. A few monitored C-SPAN to see it for themselves. Some witnessed the events in person. Others went about their day unaware of the goings on. This mother went about her normal work day, but remained distracted hoping for the future of all Alphas. Eventually word began to spread.
In Congressional Stadium, history unfolded as rookies and veterans alike took a swing at passing the Genetic Information Nondiscrimination Act, known simply as GINA. At home plate, each of them answered with an aye or nay. Gradually, nearly all hit a home run to enact this historic legislation. Cheers erupted from fans all around the U.S. The “Ayes” had won the pennant.
Thirteen years after its first introduction, GINA was passed by both the Senate on April 24th and the House on May 1st. We’re in the home stretch now. President Bush is expected hit a grand slam by signing GINA into law. The goal of GINA is to protect individuals against discrimination based on their genetic information when it comes to health insurance and employment. Alphas and those, who have yet to be diagnosed, will be able to enjoy new protections for health insurance and employment.
The hope of GINA is to protect all Americans by prohibiting insurers in both the group and individual health insurance market from 1) “requesting or requiring” genetic testing of an individual or his family or 2) using genetic information to determine eligibility or establish premiums. It further prohibits employers, including employment agencies and labor organizations, from 1) “requesting or requiring” genetic testing of an individual or his family or 2) using genetic information to make hiring or promotional decisions, or when determining eligibility for training programs.
My young Alphas, Gracie and Meghan, don't understand the significance of this historic legislation yet. What they know is they've spent their whole lives growing up with Alpha-1. They understand that support group meetings, blood tests, ultrasounds, examinations, and simple protections for their lung health are normal. They love their adult and child "Alpha friends" alike. They know no other reality. GINA is a beginning for them...a beginning free from a lifetime of possible genetic discrimination. GINA is a beginning for all Alphas…and all Americans. We still have work to do, but Alpha-1 Association members are united together. Go Team Alpha-1! We’re in the home stretch now.