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Update on Newborn Screening

Gretchen Alger Lin

All Eyes on Arkansas, West Virginia and Kansas

Arkansas is on the path to expanded newborn screening! Thanks to the continued efforts of CARES member Gail Blucker in Arkansas, and through collaboration with the Arkansas Department of Health, March of Dimes, Easter Seals and other stakeholders, the state is moving slowly toward the passage of mandated universal, comprehensive screening. It is expected that Arkansas will join the list of states screening for CAH in 2007.

On January 26, 2007, legislation was introduced in both West Virginia and Kansas to expand newborn screening. West Virginia CARES member Gretchen Murphy - in conjunction with the West Virginia Chapter of the March of Dimes and PerkinElmer - is working hard to make newborn screening a priority in her state. Also, Kansas CARES member Tonia Kroll is lending her voice to the cause in Kansas.

Now, more than ever, we need your support in these states! Please add your voice to ours by contacting legislators to ensure their support of expanded newborn screening by visiting the websites below:

Arkansas - www.arkleg.state.ar.us
West Virginia - www.legis.state.wv.us
Kansas - www.kslegislature.org/legsrv-legisportal/redistricting.do

New Jersey Leading the Way

On October 23, 2006, landmark legislation - co-written by Executive Director Kelly Leight - was introduced in New Jersey to further expand newborn screening and codify the process by which the lives of hundreds of children are saved each year. The 2006 New Jersey Newborn Screening Act is one of the most important pieces of legislation ever to be introduced as not only does it expand newborn screening by statute but also mandates appropriate follow-up, treatment, education, and an annual review of all aspects of the screening program by an advisory committee.

O Canada!

Ontario, Canada, is set to go live with CAH newborn screening in January 2007! 

Stem Cell Research
On January 11, 2007, the House of Representatives passed H.R. 3, the Stem Cell Research Enhancement Act, by a vote of 253-174. The Senate is expected to take up its version of the Stem Cell Research Enhancement Act (S. 5) within the next few weeks.

Show your support of GINA!

The Genetic Information Nondiscrimination Act (GINA) will benefit every American and directly improve the lives of those concerned with the misuse of their genetic information in health insurance and employment decisions. As an autosomal recessive, inherited disease the most effective route to diagnosis and successful management of CAH is through genetic testing. Moreover, diagnosis implies the existence of genetic information. The current lack of federal legal protections restricts individuals’ access to health information, clinical trials, targeted drugs and advanced treatments. In order to fully promote personalized medicine and the use of genetic information in healthcare, we must pass GINA legislation. Ask your representative and senators to cosponsor GINA!

Learn how to contact your representative:
www.senate.gov/senators/senator_by_state.cfm
 

Find Senator information at http://www.house.gov/writerep/

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