To the Editor:
I would like to graciously thank everyone involved in making
The Commonwealth of Virginia the 30th state to screen all newborns for
Severe Combined Immune Deficiency (SCID), commonly known as the bubble
boy disease. Babies with SCID appear healthy at birth, but without early
treatment, most often by bone marrow transplant from a healthy donor,
these infants cannot survive. It has taken the efforts of many to
finally reach this historic moment for the Commonwealth, and all those
who have been involved richly deserve to be applauded.
The Virginia Genetic Advisory Committee and its subcommittee, the
Virginia Newborn Screening Committee, approved the addition of SCID in
2011, subsequently sending the recommendation to the Commissioner of
Health. A SCID Planning Workgroup began preparing all additional facts
required by the Commissioner in 2012 after which a Notice of Intended
Regulatory Action (NOIRA) was signed by the Commissioner and approved by
the Board of Health. The progression for the NOIRA was, by statue, a
lengthy and arduous process which required that it be reviewed by the
Offices of Planning and Budget, the Attorney General, the Secretary of
Health, the Cabinet Secretary and the Governor on three different occasions.
During this time, the NOIRA had to cross the desks of two different
governors, requiring a new approval each time.
Mandating screening for SCID will prevent infant fatalities and avoid
potential expensive lifelong care that places an enormous burden on
families and society. This law takes a huge step forward for Virginia
healthcare policies, and I am grateful that all Virginia babies will now
have the chance at a healthy life. It is my hope that every state
includes SCID on their newborn screening panel immediately to save
lives. Thank you all for making this day a reality here in the
Commonwealth.
Barbara L. Ballard
Clifton