I would suggest calling your state representatives and congressmen/women and let them know about how important it is to keep this testing. Look up your state health department and get on a letter writing campaign to the decision-makers. Maybe ask your doctors to do the same. Even volunteer to write the letter for the doctor and just get their signature if they balk at you. Contact the March of Dimes in your region and tell them what you’ve learned and see if they can do something for you, too. In your letters, back them up with lots of numbers and stats. The fact that 1 in 50 people are carriers and CAH impacts 1 in 15,000 births - I think these numbers may be good reasons to keep the screening. You might also see if you can find some statistics on what undiagnosed birth defects cost the state in health care. There may be some stats somewhere about this. Maybe contact the Magic Foundation or the state newborn screening to see if they have any figures.

Ask your relatives and friend to do the same. Let me know if you have questions. Good luck.