Which states require CAH screening for newborns?
After checking each states web site, and following up with phone call to the ones that
didn't verify that they test for CAH on their web site, the following data was gathered.
(Where applicable, state names link to the page that verifies that they do screen for CAH)
States that screen for CAH
Alabama, Alaska, Arizona1, Colorado,
Connecticut2, Delaware3, Florida,
Indiana4, Iowa, Maine5, Maryland6, Massachusetts, Michigan, Minnesota,
Mississippi, New Jersey, New Mexico, North Carolina,
North Dakota7, Oregon,
Pennsylvania8, Rhode Island, South Carolina,
Texas, Virginia, Washington, Wisconsin
States that do not screen for CAH
Arkansas, California, Idaho, Kansas, Kentucky, Louisiana, Missouri, Montana, Nebraska, Nevada,
New Hampshire, New
York (not yet), Ohio, Oklahoma, South Dakota, Utah, Vermont, West Virginia, Wyoming
|1. Confirmed via phone, 4/15/2002 by Bill Slanta, Chief,
Office of Microbiology, Newborn Screening Laboratory, Arizona Department of Health
2. Confirmed via phone, 4/16/2002 by David Worsley, Supervising Biologist,
Connecticut State Department of Public Health Laboratory
3. Confirmed via phone, 4/15/2002 by Betsy Voss, Birth Defects/Newborn Screening
Coordinator, Delaware Department of Health
4. Confirmed via phone, 4/15/2002 by Weilin Long, Director of Newborn Screening
Programs, Indiana State Department of Health
5. Confirmed via phone, 4/16/2002 by Christina Armstrong, Screening Coordinator,
Maine Bureau of Health
6. Confirmed via phone, 4/16/2002 by the office of Dr. Susan Panny, Director,
Office for Genetics and Children with Special Health Care Needs, Maryland Department of
Health and Mental Hygiene
7. Confirmed via phone, 4/16/2002 by the office of Karen Oby, MPH, LRD, Maternal
and Child Health Nutrition Coordinator, North Dakota Department of Health
8. Confirmed via phone, 4/16/2002 by Barbara Kandro, Supervisor, Pediatric
Biochemistry Section, Pennsylvania Department of Health, Bureau of Laboratories
How do I get my state to screen newborns for CAH?
Simply put, you lobby. Below are some web sites that can provide information on the
process, regulations and legalities of lobbying. While these sites may be focusing on other
issues, the methods they teach are applicable in your efforts to change the laws in your
Where do I get medical bracelets?
Many people with CAH use Medic Alert (http://www.medicalert.com/).
You get not only a bracelet or necklace (with a number of styles to choose from) but a 24
hours toll free number for emergency responders to call for whatever medical information you
feel they need to know. Currently it's $35 to join (which includes the cost of the bracelet or
necklace) and $20 a year after that to renew. And you can renew online.
There are other companies that offer medical bracelets, (http://www.medids.com/, http://www.escopes.com/, http://www.fifty50.com/,
http://www.childsid.com/) but do not
offer the 24 hour phone backup.
Are there any support groups for adults with CAH?
I guess that would depend on what you mean by support group. If
you mean an actual, face-to-face group that meets on a regular basis, no. CAH is rare enough
that there generally are not many people within any city or even county to make a support
group of that kind. That's why the internet has become the arena for CAH support,
education and information sharing. On the People and Support Groups page you will find several
web pages listed. For the most part message boards have served as the meeting place for people
supporting each other. Most message boards either focus on CAH in general, Late Onset CAH or
as on this site, location or topics. While we have a Kid's Board, the responses regarding a
possible Adults-with-CAH board have been emphasizing the need for fewer boards with more
traffic. There are many adults with CAH who post on our main board as well as some of the
boards on other sites. So far they seem to find this more than adequate in their need for
communication and support.