I went to the Oklahoma Department of Health’s Genetic Advisory Counsel meeting today in Oklahoma City. This is the counsel that offer advice and suggestion to the Oklahoma Commissioner of Health on genetic issues. I had wanted to be more prepared, and have info on CAH and the stats from other states that include it in their newborn testing, but the date snuck up on me. It turns out it’s just as well I didn’t

I got to meet Pam King, the State Genetics Coordinator. A very nice lady. In fact she came up and introduced herself to me. It seems the meetings are usually attended by the members (well as many of them that show up) and some people that have been invited to share some expertise, so an uninvited visitor is something special. While it’s open to the public, and they certainly treated me with exceptional hospitality, apparently there’s not an abundance of enthusiasm on the part of the general public to be involved in such things. I was able to briefly discuss the possibility of adding CAH to the list of conditions screened and Mrs. King shared my concerns. In fact two of the items on the agenda were about expanding the list of conditions. She introduced me to Shari Kinney, the Director of Screening and Special Services. I was able to talk with Shari for awhile before and after the meeting. It seems that they are all set and ready to add CAH, as well as several other conditions to the NBS list, but state law (I was unaware of this) only allows for screening of conditions that cause mental retardation. The State Bill 750 would expand that to allow the Department of Health to add other conditions, but some of the legislators don’t want to add any more drain to the state budget, which is currently in trouble. They were able to talk the legislators into adding an amendment making the law provisional on funding, which means the state wouldn’t have to pay for it. The next hurdle then would be funding. Billing the patient creates a problem since quite a number of patients are "indigent" and the hospitals are required by law to absorb the medical costs. So the hospital weren’t thrilled with that, and they lobby just like everyone else. It was being proposed that uninsured minors with congenital conditions automatically be allowed to receive Medicare, which could pull in some Federal funding, but that’s still in the proposal stage.

All in all I was really impressed with the work they are doing. The attention and dedication is there, but the realities of the state’s current budget shortfalls are posing a significant hurdle.

The next meeting is not until September, but there are other, sub-committee meeting between now and then, and several of the people there promised to keep me up to date on things.

It was about a two hours trip there and another two hours+ back (through evening rush hour) so I’m ready to go veg and watch Survivor and CSI. I’ll keep y’all up to date how any new developments (in the screening stuff, not Survivor or CSI)