SCID Newborn Screening Timeline

 

On Thursday, January 21, 2010 the Advisory Committee on Heritable Disorders in Newborns and Children voted to add SCID to the newborn screening panel and has passed on their recommendation to the Secretary of Health and Human Services, who has the final say.  She has 180 days to decide whether or not to agree with the committees recommendation for approval.  This is HUGE for those of us who have been struggling to get this passed.  Once it’s passed, which we feel it will be, and on the panel, our next goal will be to have it established in each of the 50 states.  Again, this is wonderful news and we look forward to the journey ahead! IDF Press Release

On February 26, 2009 Barb was at the meeting today where the advisory committee voted on whether or not to add SCID to the panel for newborn screening. Unfortunately, they voted NO. However, Barb did say that we shouldn’t give up hope. “For now they voted against recommending SCID to the Secretary for newborn screening. BUT, they want to see if certain criteria can be met and then they will revote. A group of committee members are supposed to work out the criteria tonight and tell the committee in the morning exactly what they want to see. One thing they want to see is if either the Wisconsin or Mass pilot programs find a SCID baby. Neither one has, although they’ve found 2 DiGeorge babies that wouldn’t have been picked up yet and Wisconsin found a baby with a neutrophil defect that is so rare that it’s only the 2nd case diagnosed. They reported that the baby has now had a successful transplant. That child wouldn’t have lived if it were not for the Wisconsin pilot study.”

I’m so sorry that I don’t have better news to report for now.  Hopefully the re vote will come back as a YES.  Like my husband John said, “How can anyone in their right mind vote No on this?”

On November 24, 2008 the Advisory Committee on Heritable Disorders in Newborns and Children held their sixteenth meeting.  This meeting was done via WEBCAST and I had the opportunity to speak to the committee during the Public Comments section.  At that time I read our personal story and experience with SCID and shared with the committee why I feel this inheritable disease should be added to the committees recommended uniform newborn screening panel.

The committee did not make a decision during the last meeting and plans to have further discussions along with a vote during their February 26th & 27th meetings in Bethesda, MD.

4 comments to SCID Newborn Screening Timeline

  • melissa bornheimer

    Hello,

    My name is Melissa Bornheimer. My son Dawson was the baby that was born in Wisconsin who’s life was saved because of the SCID newborn screening. He will be turning 3 in June and is doing absolutely wonderful! If there is ever anything that you guys need help with please don’t hesitate to ask. Wisconsin is up in arms with our new Governer and there is talk that our newborn screening for SCID could actually get cut because of budget issues. We are putting together a task force to try to nip this in the bud. So far there is no news yet….so we wait. I am always looking for any way that I can be a help, so again, if you ever need anything please let me know.

    Thank you so much for all that you do!
    Melissa Bornheimer

    dawsonbornheimer@hotmail.com

    715-212-3421

  • cindy

    i was born a carrier of SCIDS.. and i am currently pregnant with my first.. he is a boy and i was tested and it came back positive.. i watched my brother die from it back in 1994, he was only 4 when he passed and i’m terrified that i will have to watch my son die :*(.. is there any advise you can offer to me.. I’m talking to my doctor and a specialist at the university of utah.. but I feel so helpless and unsure what i should do.. i am trying to find out as much as i can!!! but stressed and so alone in this process that i feel like im lost… so any help would help!!! i don’t really know where to go from here…

  • Heather

    Hi Cindy,
    I’m sorry to hear that your baby boy will be born with SCID. I know how scared you must be feeling right now, as I felt the same way. Please know you are not alone! Knowledge is power and you are doing the right thing by gaining as much right now as you can. Please feel free to email me at Heather@SCIDangelsforlife.com anytime and we can “talk” further.

  • Heather

    Melissa,
    So nice to “meet” you! I’m so glad to hear that your son is doing so well, that’s wonderful!!! I certainly hope that when the pilot program is done in Wisconsin, newborn screening for SCID will continue. Please, let’s keep each other posted on this issue and thank you again for contacting me. You can email me anytime at Heather@SCIDangelsforlife.com

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