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!

Washington DC Speech - Sept 2013

Thank you. I’m Sarah Wilkerson. I am here to speak to you today as a mother, and as a member of the board for the Save Babies Through Screening Foundation.

As some of you already know, my son Noah died at a few days old from undiagnosed MCADD. His diagnosis came in a day after his death – too late for my husband and I to be able to do anything to save him. Upon further investigation, we learned about a number of delays that are allowed for in the current system in many states across the country, and I urge you to consider creating clearer guidelines for how test samples should be handled, so that babies like Noah don’t slip through the cracks.

These guidelines would include:
  • Limit the window of time that hospitals have to take the initial blood sample to 24-48 hours of life.
  • No longer allow the use of the US Postal service to send in samples. A courier service must be used. As many as 16 states still allow for snail mail. This adds a couple of unnecessary days to the process right there.
  • Prohibit batching, which still happens in the more rural areas of the country where less is known about newborn screening. Better education in these areas is sorely needed.
  • Encourage labs to use their funding to keep the labs open on Saturdays. Or, at least vary shifts in the lab so that it is continuously staffed. 26 states are completely closed on weekends, and babies are born every day of the week, regardless of weekends or even holidays.
There is time and emphasis from the committee spent on treatment options, education and so forth, but the prompt turnaround of newborn screening test results is so important to consider as well, since without proper identification of these illnesses in a timely fashion, all of the follow-up steps don’t matter.

My husband and I would have given anything to have had the opportunity to care for our son the way that he deserved with the very well established treatment plan for MCADD children. It is our hope that you understand this as well and are willing to empower parents with the life-saving information that they deserve to have about their children in a timely fashion.

Thank you for your consideration.