On Thursday, September 29, 2011 IDF Volunteer and Co-founder of SCID, Angels for Life Foundation, Heather Smith, traveled to Tallahassee for a meeting with the Florida Surgeon General, Dr. Frank Farmer. She was joined by Audrey and Kyle Harden, parents of a SCID baby who passed away in February 2011, whom are now pregnant with their second child. Heather and Audrey took turns sharing their stories with SCID, emphasizing that their tragic losses occurred because neither of their children had been screened at birth for this treatable disease. Although Heather’s story took place almost 18 years ago, before newborn screening for SCID was even an option, she has witnessed firsthand how early diagnosis and treatment can save a child’s life, like in the case of her second SCID child, Taylor, who has been treated with a bone marrow transplant and is living a full and productive life.
Back in May of 2011 Florida Governor Rick Scott line item vetoed the bill that would allow the Florida DOH to begin screening all newborns at birth for SCID, keeping them compliant with the HHSA federal recommendations. Currently, FL screens all newborns for 34 conditions but until they begin screening for SCID, the 35th condition, they are considered to be non-compliant with the federal recommendation made by Secretary of Health Kathleen Sebelius back in May of 2010 when she added SCID to the core panel of conditions to screen for.
As Heather and the Hardens continue to try and secure a meeting with the Governor, this meeting with the Surgeon General was certainly a step in the right direction. Although Dr. Farmer doesn’t have the authority to override a veto from the Governor, SCID is now on his radar and he now understands the importance of this program. He has promised to support SCID screening and now every time he hears the word SCID, he will think of the stories that were told about Brandon and Annabelle and how their lives were cut short by this cruel condition.
Unfortunately, implementing newborn screening for SCID in Florida isn’t going to happen overnight but this is a prime example of how you can’t let a stumbling block get in your way or stop you from achieving your final goal. Use every opportunity you’re given to educate others on the importance of universal newborn screening for SCID and together we’ll see this happen in all 50 states!