I don’t know why this thread happened to bubble up in my memory, but I decided to do some poking around and it looks like X-linked Adrenoleukodystrophy was added to the list of required newborn screening panels by the Montana Department of Public Health and Human Services effective August 1 of this year. Not sure if you were aware or involved @dolphinboy, but that’s great news! Sometimes government really does work!
Yes, I’m very aware flurb, since I was the one who pushed to get added in Montana over the past 2 1/2 years, with the help of ALD Alliance. This testing actually started on September 1st as there was an unexpected one month delay getting it going. If it only saves one family from going through the tragedy of undiagnosed Childhood Cerebral ALD then it’s been worth it.
BTW, that makes Montana the 45th state to have ALD now as part of newborn screening, so there are still five more states to go before getting tested will have nothing to do with your zip code.
Congrats! That’s great news. Out of curiosity, what are the 5 laggard states?
Who knew that an FQ post about addressing a letter would end up with such good news! Well done, @dolphinboy !
I don’t know why this makes me so happy. Great job sticking with this for the last two and half years, and congratulation on the successful outcome!
Thanks, everyone. Based on the timestamp of my OP it’s actually been 3 1/2 years since I started pushing, not 2 1/2. I think it shows that persistence pays off, and you should never give up even if something seems hopeless.
BTW, I don’t think the governor had anything to do with it, even though I did contact him by email. The Montana Department of Public Health & Human Services (DPHHS) was who we had to convince to make things happen, although the governor also asking for it probably wouldn’t have hurt. It all came down to how they were going to pay for this testing.
For what it’s worth, I found an archive of Jeb Bush’s constituent emails from August 2000 (Florida has a very broad public records law) and I was surprised to see how responsive the staffers who read the emails were. They were rarely forwarded to the governor’s actual email, but frequently forwarded to others high in Florida government such as the Education Commissioner.
Considering that Florida has cities with larger populations than the entire State of Montana, it shouldn’t be too hard to get a letter read.