Friday, July 25, 2008

Some good News

FROM the Cystic Fibrosis Foundation's website:

Genetic Non-Discrimination Act and Newborn Screening LawsPass Congress
May 1, 2008

Basically this article is saying that the new law will make it illegal for employers and insurance companies to deny employment and health insurance based on genetics. The new law, called GINA, will protect people with CF and also those who carry the gene but have no symptoms. President Bush is supposed to sign the bill into law soon.

Five States Step Up Efforts to Screen Newborns for Cystic Fibrosis
More Than 40 States Now Provide Routine Testing for Life-Threatening Disease
July 11, 2008

So far there are 40 states, and now 44 with the addition of West Virginia, Kansas, Maine and Arkansas, that require newborns to be screened for CF. New born screening of CF makes the chances of that child living a more normal and longer life that much more plausible. Utah will also begin screenings in 2009, making the total number of states 45.

New born screenings can save hundreds of thousands of dollars on testing and doctor/specialist appointments when the child is known to have something wrong but the cause is not known. It will also save hours of restlessness and heartache for the parents who don't know what is wrong and don't know how to help. Though a CF diagnosis is not the best thing in the world it is better to know from the get go then to spend years trying to figure out what is wrong. Knowing right away can give the child the best possible care.

PA is NOT on the list yet!!! We can change that by writing our congressmen and asking them to fight for it. So if you are interested do it!!!!!!

If you live in Bucks you want to write to Patrick Murphy:

Or check out your local reps page so you can write him/her!!!!

1 comment:

  1. I see you wanted to a cf tattoo.. well.. i have Cf and i am 19 yrs. old and me and my mom got matching cf tattoos. its a purple rose, purple being the cf cure ribbon color, and above it is says 65 and under it is written roses. mines on my foot and my mom got hers on her arm.