Newborn Screening Pilot Programs

thumbnailCAJ2OGZWCurrently, there are twenty three states implementing screening for SCID (August 2014).  They’re California, Colorado, Connecticut, Delaware, Florida, Illinois, Iowa, Maine, Michigan, Minnesota, Mississippi, New Jersey, New York, Ohio, Pennsylvania, Rhode Island, Texas, Utah, Washington, West Virginia, Wisconsin and Wyoming.   Arizona is doing screening at select locations.  The Wisconsin program began in January of 2008, Massachusetts implemented its program in February of 2009, California began their program on August 16, 2010, Puerto Rico began theirs in September of 2010 and their pilot ended in 2012.  They did, however, got funding and begin screening again until that funding source ran out in April of 2013.  Louisiana and New York began in October of 2010 but Louisiana is no longer screening do to lack of funding.  Michigan began screening on October 1, 2011, Colorado began November 2011, Connecticut began at the end of 2011, Mississippi is now screening and Delaware started screening all babies in July of 2012.  Florida began screening babies on October 1, 2012 and Texas began it’s screening on December 1, 2012.  Minnesota began screening in January 2013,  Iowa began June 3rd  and both Utah and Pennsylvania began on July 1, 2013.  Investigators have diagnosed cases of  SCID and other lymphocyte disorders in almost all of the states that are currently screening.    In states like CA they’re detecting several cases, in fact, the incidence there has been 1 in 32,000 and 1 in 22,000 in the Hispanic population.

*To increase the number of states and territories actively screening for SCID, the CDC is awarding 3 states a 2 year grant to begin screening.  The funding will be $100,000/state/year and funding will be awarded in August of 2013.

States that will be implementing SCID Newborn Screening Programs in the near future are:  Illinois, Maine, Maryland, Missouri, Nebraska, New Jersey, North Carolina, Oklahoma, Rhode Island, Vermont, Virginia, Washington and the District of Columbia.

 

My notes on what other states are currently doing:

May 24, 2013 the following information was reported during the monthly NBSTRN monthly SCID call; NJ has purchased the equipment and is waiting for the room to be ready, DE reported they have picked up their first baby through the state SCID screening program, VA believes they will begin screening in the next year to year and half, WA has started the process for changing regulation and anticipates screening will begin in 2013.  NC has moved into their new facility but will need to increase their fee before screening can begin.  VT will have to go through legislature but they are hoping to begin by the end of 2013 or the beginning of 2014.  Maine is also hoping to start screening by the end of 2013.

July 27, 2012 the following states reported during the NBSTRN monthly SCID call that they will begin screening statewide for SCID in 2012: Florida, Texas and Iowa! – (update) Iowa did not begin screening until June of 2013.

July 2012 Delaware officially went “live” and now ALL babies born in the state are being screened for SCID.

April 2012 I learned at the PIDTC meeting in Boston that Mississippi has begun screening all babies at birth for SCID.  Way to go MS! SCID families share their stories and push for SCID newborn screening in all 50 states click here to read the article.

December 28, 2011 Delaware is launching a pilot program to begin screening for SCID.  SCID mom,  Donna Sawyer, had an exciting opportunity to visit the state lab and share her story with SCID.  To read the article in the Delaware Online click here.

On Tuesday, March 8, 2011 the bill passed the Senate Public Health Committee in the state of Illinois.  It must now go before the entire Senate and be passed there before moving on to the House for approval.

March 2011 three states have recently turned to the legislature in their efforts to quickly achieve the implementation of SCID newborn screening.  The three states are; Connecticut, Illinois, and California.  To read more about this on the IDF SCID Initiative blog click here.

On Monday, February 7, 2011 the Illinois Advisory Committee voted unanimously to recommend the addition of SCID to the states current screening panel.  This gives the Illinois State Department of Health and the state laboratory permission to move forward with implementing newborn screening for SCID on all babies born in the state of Illinois.

Friday, January 28, 2011 I was asked to present at the Newborn Screening Advisory Committee meeting today along with Immunologist Dr. Elena Perez from All Children’s Hospital.  We were very fortunate to have Florida Representative Matt Hudson in attendance at today’s meeting.  Together, as a team, we were able to show the committee the urgency for newborn screening for SCID in Florida.  I’m thrilled to say that after our presentation we made history in FL, as the committee voted UNANIMOUSLY (I was told this is the first time that has happened) to add SCID screening to their current panel!  SCID will be the 36th condition to be included on Florida’s newborn screening panel.

Monday, November 22, 2010 Rhode Island will be moving forward with SCID newborn screening.  The Advisory Committee has voted to add SCID to their current screening panel.  When screening does begin, Rhode Island will be sending their samples to the state lab in Massachusetts for testing.

Thursday, October 14, 2010 Delaware is adding SCID NBS to its panel.  This will be implemented sometime after Jan. 2011. Today’s meeting notes. Michigan and Minnesota have also received Advisory Committee approval.  Check out the IDF blog for further details.

Wednesday, October 13, 2010 confirmation that Puerto Rico is conducting a SCID Newborn Screening Pilot program on all babies born in Puerto Rico.

Wednesday, October 13, 2010 confirmation that Louisiana is conducting a SCID Newborn Screening Pilot program on all babies born in their state.

Monday, October 11, 2010 the New York Department of Health created an emergency ruling to allow SCID newborn screening be added to their current panel.  The DOH stated, “The Department of Health finds that immediate adoption of this rule is necessary to preserve the public health, safety and general welfare.” For further information on today’s ruling.

Tuesday, October 5, 2010 the Virginia Genetic Advisory Committee and the Newborn Screening Sub Committee met and feel that moving forward with SCID newborn screening “is the right thing to do.”  They plan to follow closely the current pilot programs being conducted and it is now their definitive goal to gets things in motion so they are ready to move forward once all of the details are worked out. A parents testimony from today’s meeting.

Tuesday, October 5, 2010 the Minnesota Newborn Screening Advisory Committee met and voted unanimously to add SCID to the states newborn screening panel.  The next step is to have the Commissioner sign off on SCID screening and then get legislature to grant permission to increase the fee for screening.  Who wouldn’t approve a small increase if it means saving a babies life? Testimony from an IDF representative.

On Tuesday, October 5, 2010 the Michigan Newborn Screening Advisory Committee met and voted unanimously to add SCID to the states newborn screening panel.  It’s expected that all babies born in Michigan will be screened for SCID beginning October of 2012.  Parent testimony from todays meeting.

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, 2009Barb 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 Newborn Screening Pilot Programs

  • 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

Leave a Reply

You can use these HTML tags

<a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <s> <strike> <strong>