IDF President and Founder Marcia Boyle advocates for the inclusion of SCID newborn screening in Maryland with an opinion piece published in the Baltimore Sun –
A Routine Test Could Save Babies Born with ‘Bubble Boy Disease,’ Yet the State Repeatedly Fails to Budget for It
By Marcia Boyle
12:36 p.m. EST, February 10, 2014
Maryland is justifiably proud of being a leader in many health care initiatives. Yet when it comes to adopting a simple policy that would save the lives of babies, Maryland policymakers are sadly behind much of the nation. While more than half of babies in the U.S. are routinely screened as newborns for Severe Combined Immunodeficiency Disease (SCID), no babies in Maryland are screened for the condition. As a result, babies born with SCID in Maryland will be at a severe disadvantage, and some of them will die.
SCID is commonly known as “bubble boy disease” after David Vetter, a young boy who lived in a germ-free bubble for 12 years. Often called a pediatric emergency, SCID is a treatable but serious disease in which babies fail to develop a functioning immune system. Infants appear healthy at birth but cannot survive without early treatment, most often by bone marrow transplantation. If a baby is screened, diagnosed and treated early, generally within several months of birth, there is more than a 90% chance that a SCID baby will be effectively “cured.” Without treatment, a baby will most likely die.
Because 18 states are currently screening newborns for SCID, experts now estimate that one in every 40,000 to 70,000 babies is born with this condition. In Maryland, with approximately 75,000 births per year, it is likely that one to two babies are born with SCID annually. According to the Department of Health and Mental Hygiene’s 2013 report to the Maryland General Assembly, the cost of not treating this disease early is nearly $700,000 per baby (some reported cases show costs of more than $2 million per infant).
By comparison, DHMH reports that the cost of treating a baby with SCID who has early newborn screening and diagnosis is only $220,000, resulting in a savings of nearly $500,000 per infant when SCID newborn screenings are in place. Given this data, it seems “penny wise but pound foolish” for Maryland to continue to postpone funding SCID screening.
In 2010, Secretary of Health and Human Services Kathleen Sebelius recommended that SCID be added to the uniform newborn screening panels in all 50 states and territories. In June 2011, Maryland’s Advisory Council on Hereditary and Congenital Disorders concurred with the federal recommendation and unanimously recommended adding SCID to the Maryland newborn screening panel.
However, the failure to include funds in the previous two state budgets has prevented SCID newborn screening from being implemented in the state. And regrettably, the FY15 budget that was recently submitted by Gov. Martin O’Malley does not include funds for this $750,000 investment.
We implore both the legislature and Governor O’Malley to find the funds to correct this oversight as they go through the budget process, which can be accomplished by ensuring that they are included in a supplemental budget.
These funds will purchase supplies and instruments to make newborn screening for SCID a reality and to literally save the lives of Maryland babies. Saving one or two Medicaid babies, for which Maryland is financially responsible, will more than cover the initial expense of purchasing and setting up the lab equipment to do the screening.
Some 18 states are already screening for SCID, with another nine states scheduled to begin screening this year. Where is Maryland?
It’s not yet too late. I urge Governor O’Malley and the legislature to save babies’ lives by finding the funds in the fiscal 2015 budget for the equipment and operating funds to perform SCID newborn screening tests. Make newborn screening for SCID a priority and show that every life is worth saving.
Marcia Boyle is President and Founder of the Immune Deficiency Foundation based in Towson. Her email is idfscidInitiative@primaryimmune.org
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