SCID added to Newborn Screening Panel!

OK, do I have your attention? On Friday, May 21st, 2010, Secretary Sebelius approved the recommendation to add SCID newborn screening to the universal core panel.  So, where you’ve always heard about the 29 core diseases that HRSA and March of Dimes recommends, there will now be 30 recommended diseases and SCID is number 30!


You can find a copy of the letter here.  It is in PDF format.




Well, the individuals states will need to adopt testing and that won’t just happen. In many states it requires legislative action to add a new test to the state’s panel of tests.  This is where we are going to need the help of all of you! Heather and I have been working with IDF to put together a “tool kit” or set of fact-sheets about SCID.  We need to help educate our own state newborn screening labs and our state legislators about SCID.  Here’s the page on the IDF website.  You can download these 4 fact sheets from here.  There’s also a link there under Take Action to the National Newborn Screening and Genetics Resource Center. That site will help you find the contact person for the screening lab used by your state.  Some states use their own lab, some use a regional lab, and some states use a private lab.  The first step is to try and contact someone from your state’s lab.  Offer to help them learn about SCID.  Find out if legislative action is required in your state.  We cannot find a list which tells us which states require legislative action and which states can just add a test.  Most require legislative action, so assume it will be needed.  Go to your state government page and find out who your state representatives are.  Find out if they sit on the Health Committees for your state.  Make contact with their office by sending an email to introduce yourself.  A short email stating who you are, where you live, what you want (your state to add SCID newborn screening to its panel), and why you are interested is enough to get things started.  You’ll probably get a letter back from someone in that office.




Currently, there is legislation pending in NY.  Anyone in NY should contact their state representative and assemblyman and ask them to support the bill.  Here’s the info on the NY bill: They are: Bill S.6656  is currently under consideration by the Senate Committee on Health, and A.9791  by the Assembly.  Contacting your local state legislator could be productive at this point to find out their stand on the bill and perhaps to find out the actual status of what is happening.  Also, NY residents can contact both Senator Thomas Duane, Chairman of the Senate Committee on Health and, Assemblyman Richard Gottfried, Chairman, NYS Assembly Committee on Health.


WI and MA:


I’m not sure what will happen in WI and MA.  The pilot studies were being funded from sources outside the state.  They may require legislative action to continue testing.  Anyone in those states should find out more.


If you make contact with ANYONE from your state, please report back to me, Heather, and IDF  We need to know who is working on this, who you’ve made contact with, what progress is being made, etc.  IDF is going to work as the clearing house of information and put up info that will help encourage others to do the same thing, but they can’t do it if you don’t report it to them.




States will not adopt the test immediately.  First, the test being used by WI and MA will require many states to purchase new equipment. This is not the only test that would ultimately use this equipment, but it could prove to be a hurdle in some states. That means state budgets have to approve it.  Many states are having budget deficits as it is.  This will take some work and lobbying.  There’s another test being developed that could use a technology that many of the states are already using.  More testing is needed on that one, but if it proves accurate that would be good.  Don’t be surprised if you hear labs tell you that they want to see more results on what test to adopt.  There are a few states, we’re hearing 2 to 4, that could be getting a grant to run more pilot tests.  I hope to hear more about that soon and will let you know when we know more details.


The thing to begin doing now is finding out more about your state’s newborn screening program.  A handful of us have worked for years to get us to this point, but it’s going to take all of us to bring this to each state.  Are you ready?