Fall 2007 Newsletter

CARES Foundation, Inc.

EVERY NEWBORN IN THE UNITED STATES TO BE TESTED FOR CAH BY JULY 2008!

Victory in Arkansas and Across the Nation!

On July 11, 2007, the Arkansas Department of Health publicly committed to expanded newborn screening including testing for CAH by July 2008. A huge day for families across the nation, CARES member Gail Blucker appeared on the evening news to share the story of her SWCAH-affected grand- daughter and to congratulate the state on making a dream reality: As of July 2008, every baby born in the United States will be tested for CAH at birth. Thank you Gail as well as Governor Mike Beebe, the Arkansas Board of Health, the Arkansas Department of Health and other advocates who worked so hard on this initiative.

Canada Nearly Halfway There

Alberta started screening for CAH in April and British Columbia plans to start soon. Joining those already screening for CAH (Manitoba, North West Territories, the western part of Nunavut and Ontario), now five and a half of the 13 provinces have committed to expanded newborn screening including testing for CAH. If you live in a province that does not currently screen for CAH and would like to join CARES in advocating for expanded newborn screening in Canada, please contact Gretchen Alger Lin at gretchen@caresfoundation.org.

List of CountriesWhere CAH Newborn Screening is Available

ARGENTINA
AUSTRIA
BELARUS
BELGIUM
BRAZIL
CANADA
CHILE
CHINA
COLOMBIA
COSTA RICA
EQUADOR
FRANCE
GERMANY
GREECE
GUATAMALA
INDIA
ISRAEL
ITALY
KOREA, REPUBLIC OF
LIBYA
LUXEMBOURG
MACEDONIA
MEXICO
NETHERLANDS
NEW ZEALAND
PERU
PHILIPPINES
PORTUGAL
QUATAR
RUSSIAN FEDERATION
SAUDI ARABIA
SOUTH AFRICA
SPAIN
SWEDEN
SWITZERLAND
TAIWAN
THAILAND
UNITED ARAB EMIRATES
UNITED KINGDOM
UNITED STATES
URUGUAY

Source: Perkin Elmer

Newborn Screening Worldwide

We need Your Help

While we are celebrating victories for babies across North America, the fate of newborns affected by CAH around the globe remains ominous. Testing is available in 39 countries outside of the United States and Canada with Saudi Arabia being the most recent to begin CAH newborn screening. Screening is being done under a pilot program in Finland and a similar program is in the works for 2008 in Denmark and possibly Australia. Mandated testing for CAH however remains uncommon and often is not universally available even in those countries where testing has begun. For example, in Brazil, only the private sector is offering testing and in the United Kingdom, every infant is not being screened for CAH at birth, nor does the government require it. The time has come to change this. CARES is working on an advocacy plan for these countries: reaching out to our members, professionals and other advocacy organizations. If you would like to join us in our efforts, please contact Gretchen Alger Lin at gretchen@caresfoundation.org.

MAKE SURE YOUR FAMILY IS PROTECTED AGAINST GENETIC DISCRIMINATION,TELL THE SENATE TO TAKE ACTION ON GINA NOW!

As a part of CARES Foundation’s continual advocacy efforts, over the past several months CARES Foundation and our members have been working on initiatives related to the Genetic Information Nondiscrimination Act of 2007 (GINA) and funding for the NIH and State Children's Health Insurance Program (S-CHIP). 

WHAT IS GINA?
The Genetic Information Non-discrimination Act of 2007, (S.358) is a bill that will prohibit discrimination on the basis of genetic information by health insurers and employers. (see http:// thomas.loc.gov/cgibin/bdquery/z?d110:SN00358:@@@D&summ2=m& for a summary) For 12 years, the United States government has been trying to pass legislation making discrimination based on genetic information illegal.  

HOW DOES GENETIC DISCRIMINATION AFFECT PEOPLE WITH CAH?
Genetic testing is particularly important in families with a history of CAH. Testing in the parents allows for early detection and treatment in the child. However, some people may fear discrimination by health insurers and avoid testing for CAH. The Genetic Non-Discrimination Act of 2007 would prevent insurers from dropping coverage or charging higher rates for families known to carry mutations for CAH. It also would prohibit employers from making decisions related to hiring, firing, promotions or training based on your CAH status.  

WHAT CAN YOU DO?
Right now, GINA is waiting to be brought to the Senate floor for a vote. Legislation like GINA has been introduced again and again over the past 12 years and never passed. It has been approved by the House; we just need the full Senate to vote on the bill to get it to the President’s desk! Tell your Senator to help bring GINA to the floor for a vote immediately. Go to www.senate.gov to contact your senator.  

Pass it on! Tell your friends, family, coworkers, and other CARES members to take action now. We must make a big impact on this issue, and if every senator is contacted multiple times, we can make it happen!  

NIH BUDGET
As an orphan disease, there is very little money available for research for better treatments and eventually a cure for CAH. Without proper funding of the National Institutes of Health, much of the research that is being done on CAH will suffer. Unfortunately, presidential budget requests over the past few years have continually fallen short of prior budgets thereby threatening the very research vital to our community.