Friday, September 20, 2013

Big win in Washington DC today, and I am so excited!!!!!!

I realize this is all really complex stuff, so to reorient you with our story and what I fight for, Noah died of a rare genetic illness that was 90% treatable. His diagnosis came in from the state health department the day after he died. Obviously, the system is broken if it takes too long to turn around vital life-saving information like this to parents.

I have spoken twice in Washington DC in front of the appropriate committee, and both times I was pretty much blown off. I went into today’s speech with a bit of a bad attitude expecting the same thing, but due to some other irons I have in the fire on this issue, I just knew that I had to do it again, and would probably keep doing it and get the same result. Crazy, huh?

I prepared my speech, and delivered it with some jangling nerves. This is a scary group of people! Much to my shock, there was discussion afterward! Three people on the committee discussed it, including the committee chair, who tasked the Centers for Disease Control (CDC) and the Association for Public Health Laboratories (APHL) with being prepared to research and present on the issue at the next committee meeting in January!!!!

So, what does that mean? Basically, the CDC published a document in 2012 that has their best practices and recommendations for newborn screening programs in the United States. You can find the full report on their website. It’s a big fifty page booklet of guidelines. I saw them present on it at the first DC meeting I ever attended a year ago, and was excited to see that they part-way address the issue (it definitely needs to be beefed up). I had a great conversation with the CDC representative about it afterward, and asked her about expanding that section. They didn’t have plans to do a revision at the time (the report was brand new at that point), but with this change, they might be pushed to do it.

Either way, at the next committee meeting in January, these folks have to be prepared to research and speak on it. I have, of course, researched it extensively myself, and I hope they are open to speaking with me on what I have found to be true. I definitely plan on reaching out to them. Sometimes these guys aren’t so open to working directly with families. That is definitely true of the APHL, but the CDC folks have so far been great when I have spoken to them before. We will see.

BIG PRAYERS that they don’t do a half-baked job. I plan to keep pushing and speaking as much as I can. I hope we end up with what I want, and what I feel would honor Noah’s life and bring meaning to our loss. Other babies are at risk in this country, and they deserve the fighting chance that my son didn’t have.

Thanks for celebrating this win with me! I am on cloud nine over here!


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