Thursday, January 31, 2013

Mrs. Wilkerson goes to Washington (Er…well…sort of) again!

The committee I spoke to last time meets once a quarter, so here we are again a few months later, and it’s now time to do this whole thing again. Fortunately/unfortunately, they decided to do this as a virtual meeting. It is good because I don’t relish spending time away from Aaron at all. Given what I went through with Noah, to say that I have separation anxiety when it comes to being away from Aaron is a bit of an understatement. It is nice to just do our usual routines, but I can still go to the meeting. Unfortunately, not being onsite with everyone means that there is no networking, which quite frankly is probably the most valuable part of being there. It is a much different prospect trying to sell someone on an idea when you are face to face rather than over the internet. Nonetheless, this is how it is, and again it is an opportunity too good to pass up. (And, a HUGE thanks to the Save Babies Through Screening Foundation for making this happen!!)

To follow up on the outcome of last September’s meeting, not much has changed with the committee. They haven’t made any broad sweeping policy changes based on my heart-felt speech. I didn’t expect them to. It was hard for us to get changes made at the state level. To do it on a federal level is something else entirely, as you can imagine. I have a few irons in the fire though, and if I have learned anything from doing things at a state level, it is that you have to make yourself a squeaky wheel  before they pay attention to you. I am therefore following the same logic and through a few things I have going, I am working on making myself a squeaky wheel to this group. It is amazing how I know some of the players now. They are starting to know me. It is pretty cool.

I wanted to share my speech with you. Some things that I knew better this time that I didn’t know last time were:

    • These guys are the top level of geneticists. I don’t need to spend time explaining Noah’s illness. Since I have a whopping two minutes to give my speech, I need to skip going into details there. They already know.
    • You really have to watch how emotional you make your story. If you get too passionate, crying, over the top, it doesn’t go over well (I don’t really do that anyways if I can help it.) Just stick to the facts Jack.
    • Thanks to a recent project, I am beginning to have some real data to speak about. More will be coming soon. I think this group responds VERY well to that, so that’s my focus going forward.
    • Going to say again, I have only two minutes. They are very stingy with time, so I have to make my point clear and quickly.

    Given that, here’s what I presented today:

    Hello. My name is Sarah Wilkerson and I am here as a parent, and a board member for the Save Babies through Screening Foundation.

    This is my second time speaking to you all about my son Noah. Noah lived for only a few precious days in 2009 before he unexpectedly slipped into a coma and passed away. A day later, his newborn screening test came back indicating that he had MCADD.

    In the years since his passing, I have committed myself to speeding up the turnaround time of Newborn Screening test results, since even seemingly innocuous delays can mean life or death to babies like Noah.

    Previously, I spoke to you about the policy changes I was able to help enact in my home state of Colorado, including the mandatory use of courier services to deliver test samples to the lab. Prior to these policy changes, Colorado had no set method of shipping Newborn Screening test samples, and hospitals commonly would use the US Postal Service. We have succeeded in changing this policy in Colorado, but it is still a condoned practice in at least 30% of states, including:

  • Alabama

  • Arkansas

  • California

  • Idaho

  • Indiana

  • Kansas

  • Kentucky

  • Louisiana

  • Minnesota

  • Nevada

  • Pennsylvania

  • Tennessee

  • Texas

  • Utah

  • Washington

  • Wyoming

  • Frequently, it is hospitals in the more rural areas of the country that use this method, and test results are batched together, to wait until there are enough to warrant sending a package to the appropriate state lab through snail mail. This can add days to the screening process - days that babies like my son Noah just don’t have. The Save Babies through Screening Foundation was even started because of the death of our founders’ son 14 years ago in Georgia, due to batching.

    Therefore, where possible in your projects, I urge you to consider sensitivity to the timing of tests and encouraging the use of a courier service to expedite delivery of specimens to the appropriate state labs.

    At the end of the day, each state can test for everything under the sun, but if test results are not turned around in a fashion that allows for prompt identification and life-saving treatment to begin, the test may as well have not been run at all.

    Thank you for your time and consideration.


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