The SACHDNC is the only national venue where parents can contribute their experiences and perspectives to the public deliberations on newborn screening. In addition, the Committee needs to complete its deliberations on Pompe Disease so that babies' lives will be saved. It is vitally important the Committee's term be extended until Congressional reauthorization occurs. Any gap in the Committee's activities could lead to babies' lives in this country being needlessly lost.
Any concerned individual can sign this petition. Please sign and share as we need these signatures by Sunday, February 17, 2013. Read the letter below and add your signature to this letter by signing this petition.
The Honorable Mary K. Wakefield, PhD, RN
U.S. Health Resources and Services Administration
5600 Fishers Lane
Rockville, MD 20857
Dear Dr. Wakefield:
As a group of concerned parents, individuals and organizations representing families of those who have been identified by newborn screening or who have conditions amenable to identification by newborn screening in the future, we are extremely concerned by recent developments regarding the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC). We strongly urge you to ensure that this vital Committee continues its essential work without interruption, so that babies do not needlessly die from candidate conditions that could otherwise be detected and treated if they are included in the Recommended Uniform Screening Panel (RUSP).
The SACHDNC began its work in February 2003, and many of the undersigned have been active participants in the open meetings of the committee, we understand the work that has gone into developing protocols for condition review and decision-making to add conditions to the RUSP. If the Committee is allowed to cease functioning, there is a risk that these efforts will be significantly disrupted and that key individuals who support this system will move by necessity to other tasks. Most critically, this could have immediate impact on the nomination of Pompe disease to the RUSP, a process that is nearing completion and was scheduled for a vote at the May 2013 SACHDNC meeting. Consideration of other conditions, including spinal muscular atrophy and Duchenne muscular dystrophy, stands to be delayed by years if the SACHDNC charter expires. As parents, we think this is an unconscionable resolution to this difficult situation. It is time that babies do not have to wait!
In addition to expanding the list of conditions for which screening is now recommended, the SACHDNC has provided the vital impetus for creating equity and justice for families across the United States and for guiding states through this process. Prior to 2003, some states screened for four conditions while others screened for as many as 36. Further, addition of conditions to state screening panels lacked the rigorous systematic review currently provided by the RUSP process. Where a family lived mattered a great deal when it came to saving a child’s life! Now, the majority of states (44 and the District of Columbia) require screening for at least 20 of the 31 recommended conditions, and work is underway to both bring parity to states and to add the newly recommended conditions to state screening panels. There is no question for parents these developments are absolutely critical, especially for the over 12,500 babies born each year in all of our 50 states who are affected by one of the RUPS conditions.
As parents, individuals and organizations supporting families, we urge you to understand the following issues that have or will impact our lives, and to address them by ensuring that the SACHDNC continues its essential functions beyond April 24, 2013:
• Maintain the SACHDNC - the only national venue where parents can contribute their experiences and perspectives to the public deliberations on newborn screening. Numerous parents and organizations have contributed public comments since the inception of the SACHDNC, providing impetus to move conditions through the deliberative process.
• Ensure that the SACHDNC meets before April 24, 2013. Let the Committee complete its’ deliberations on Pompe disease so that, if nominated, states can begin deliberation and implementation of screening for this condition so that babies lives will be saved
• Extend the SACHDNC term until Congressional reauthorization occurs. It is our understanding that Secretary Sebelius has the authority to extend the term for up to 2 years pending reauthorization, and that, in addition, there is ample support within and beyond Congress for reauthorization.
• Appoint a new Designated Federal Official before the end of February 2013. As Dr. Copeland steps down, allow for continuity between her work and that of her successor so that no gaps in committee work occur. Further, as parents, we support that appointment of an individual who is well-informed about newborn screening programmatically and from the patient and parent perspective of management and treatment of identified conditions.
We personally know about the success of newborn screening and applaud the Department of Health and Human Services and CDC in acknowledging it as the major public health program that it is. In 2013, we enthusiastically celebrate 50 years of newborn screening, and want to see another 50 years and more of a coordinated, thoughtful and scientifically sound program that benefits all babies and families. As your allies in saving the lives of children through newborn screening, we unreservedly urge you to implement our requests by ensuring that the SACHDNC can meet before the end of April, extend its terms, fill the DFO position and retain the ability of the public to speak out. If we can provide further information, answer questions or facilitate discussion with any of the undersigned individuals and/or organizations, please contact Jill Levy-Fisch , President of the Save Babies Through Screening Foundation at email@example.com or 914/588-1127.
cc. Administrator Michael C. Lu, Maternal and Child Health