New York is known as a place of movement and action (from the bustle of activity in NYC to the IDF Retreat in Rye Brook in June :)) and now New York is currently a site of action on the SCID Newborn Screening Campaign!
New York State’s Health Department is making some administrative moves toward adding SCID to the newborn screening panel. This could still take an extended period of time for the administration to do research, go through the administrative process, and implement. It is important that New York residents contact the Commissioner of Health to encourage him to move this process along! Please use the sample letter to write to Commissioner Daines and ask that he show his commitment to New Yorkers’ health by including SCID in the newborn screening panel. Click for Sample letter
And, there is a new bill in the NY State Legislature introduced at the end of June, S 8408, that would add SCID to the newborn screening panel. The bill was introduced by Senator Skelos and is a taken from another piece of legislation that would have required the inclusion of SCID to the panel along with several other conditions. Sen. Skelos introduced the new bill in order to increase the chances of passing this bill and requiring the addition of SCID to the newborn screening panel.
Please use the sample letter to write to your own NY State Senator and ask for the support of this important legislation! Click for Sample letter
Some IDF advocates are already working in NY to try to make SCID newborn screening a reality in the state. Joanna Tierno and Tara Mingione have contacted the State Newborn Screening Lab to educate them about adding SCID to the newborn screening panel and contacted their State legislators in support of SCID Newborn Screening legislation. Tara also learned that the Newborn Screening Lab is planning to sponsor a conference in March 2011 on SCID screening.
Have you been working to get SCID on your own state’s newborn screening panel? Do you have a personal experience with SCID? Please COMMENT below and contact IDF to find out how to join in the efforts! firstname.lastname@example.org