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Over the past several months, huge strides
forward have been made in the area of newborn screening; though, of course,
there still is a great deal of work to be done.
Victories
In the United States, only three states now remain that do not test for CAH.
As announced in May 30, 2006, letter from the Louisiana department of health (http://www.dhh.louisiana.gov/offices/miscdocs/docs-263/EXPANDED.SCR.LETTER.5.30.06.pdf),
the state expanded testing to 27 conditions, including CAH, effective August 1,
2006. Special thanks go out to members across the state that assisted CARES in
both our advocacy and media-based efforts there.
Advocacy Continues
Advocacy work continues in Arkansas, Kansas and West Virginia.
Thanks to the efforts of CARES member Gail Blucker in Arkansas, CARES is
actively involved in efforts to expand newborn screening. All branches of
government have agreed on the need to expand and to include CAH in all of those
plans. CARES has placed the leaders of this effort in contact with several
experts in the field of CAH newborn testing to make sure Arkansas creates an
efficient and effective testing program.
Stumbling Block
The stumbling block, it appears, is funding for follow-up. When an infant
comes back with a positive result, the state needs to have people and systems in
place to inform the physician of the positive test result, conduct confirmatory
testing and make sure the family gets the support and services they need. CARES
is collaborating with the Arkansas Department of Health, March of Dimes, Easter
Seals and other stakeholders in the state to encourage the crafting of
legislation to mandate universal, comprehensive screening that is properly
funded. Please contact legislators across the state
www.arkleg.state.ar.us to ensure
their support of expanded newborn screening.
Outside the US
Outside of the United States, momentum is building in the area of newborn
screening. In early 2006, expanded newborn screening, including testing for CAH,
began in Russia. In May, Canada celebrated the opening of an expanded newborn
screening center at Children’s Hospital of Eastern Ontario (CHEO). With a
commitment of $7 million per year, the government will implement comprehensive
testing for 27 disorders, including CAH, by the end of this year. As of July
1st, financial coverage of expanded infant testing including screening for CAH
began in Taiwan. At the Sheba Medical Center in Israel, universal, comprehensive
testing will soon begin. |
