The Utah Department of Public Health has announced that, effective immediately, all newborns born in the state will be screened for spinal muscular atrophy. This announcement makes Utah the first state to implement permanent SMA screening.
Late last year, the Utah Newborn Screening Advisory Committee recommended that SMA be added to the state screening panel. The Executive Director of the Department of Health approved the Advisory Committee recommendation, and the recommendation was followed by rulemaking to add SMA. The rules went into effect on January 29, 2018.
Minnesota and Missouri have also adopted permanent screening for SMA, though both states are still in the implementation process.
Other states, including Massachusetts and North Carolina, are or will soon start screening on a pilot basis. Pilot screening is temporary, but is often a precursor to the adoption of permanent screening. In fact, some states require pilot screening before permanent screening is adopted.
Cure SMA Advocacy and Funding Leads to this Historic Moment
Cure SMA advocates led the efforts to support newborn screening for SMA, testifying before the legislature and the Advisory Committee.
In October 2017, Cure SMA hosted a luncheon for state legislators to educate them on the science of treating SMA and to discuss state implementation of and funding for newborn screening.
Cure SMA also supported newborn screening efforts in Utah by providing a grant to assist the state lab and the University of Utah in implementing SMA screening. The state legislature is in the process of passing a new budget that will include a nominal fee increase for screening kits to support the state’s newborn screening program, including the addition of SMA. The grant from Cure SMA will cover the costs until this new budget is passed, so there is no delay in implementing screening.
“FDA approval of the first treatment for SMA in late 2016 represents a huge shift in care for patients with this devastating disease, and for the first time, offers hope that affected children will not only survive, but thrive,” said Dr. Russ Butterfield, who is the principal investigator in the Cure SMA grant. “Ongoing studies have shown that early treatment, before symptoms emerge, results in dramatically better outcomes. With the start of the newborn screening program in the state of Utah, we will be able to identify and treat all patients with SMA in the first weeks of life, before symptoms emerge. Utah has been a leader in development of these revolutionary therapies, and now becomes the first state to offer newborn screening on a statewide basis.”