07-05-2025
Nevada looks for way to continue ARPA-funded expansion of rare disease screenings for newborns
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Nevada two years ago began using American Rescue Plan Act dollars to expand screenings of newborns for rare diseases. With the end of that federal funding in sight, state lawmakers are looking for a way to keep providing early detection of rare but treatable diseases.
Their proposed solution has been met with opposition from hospital groups who say they shouldn't have to bear the additional cost of the screenings.
Sponsored by Democratic state Sen. Julie Pazina of Clark County, Senate Bill 348 would increase the fee hospitals pay the Nevada State Public Health Lab for a newborn screening panel to $150. The current fee is $81 and has been since it was established in 2014.
That year, the Nevada State Public Health Lab at the University of Nevada Reno began screening newborns for 29 heritable conditions. In 2022, lawmakers awarded the lab $3.9 million in ARPA funding, leading it to expand screening by an additional three conditions the following year.
States must spend their ARPA dollars by the end of next year.
The increased fee proposed in SB348 would allow the state lab to continue the ARPA-funded screenings and add an additional four conditions. Those changes would put Nevada in alignment with the U.S. Department of Health and Human Services' accepted national standard for newborn screening, known as the Recommended Uniform Screening Panel (RUSP).
SB348 passed the full Senate 16-5, with three Republicans joining Democrats in support. The bill received an Assembly committee hearing Monday.
UNR School of Medicine Dean Paul Hauptman told state lawmakers RUSP includes conditions that have an effective treatment or where early diagnosis is crucial.
According to the U.S. Centers for Disease Control and Prevention, 1 in 300 newborns is diagnosed with a condition detectable through newborn screening.
Among the RUSP conditions added for screening in Nevada in 2024 was spinal muscular atrophy, which affects motor neurons in the spinal cord and can lead to severe physical disabilities.
'The public health lab has recently diagnosed several newborns with this condition, meaning treatment has been or can be initiated,' Hauptman said. 'Clearly newborn screening directly impacts the lives of young children and their families.'
He added, 'The only question that remains is who pays.'
The Nevada Hospital Association and Nevada Rural Hospital Partners are opposed to SB348, arguing that hospitals shouldn't bear the cost of the additional screenings.
'We believe that the state should fund the state lab,' said Patrick Kelly, lobbyist for the Nevada Hospital Association. 'Or if that's not feasible, insurers should cover the cost.'
For patients, newborn screenings are covered as part of a global labor and delivery fee, which is typically paid by their insurer to the hospital. Kelly said this means hospitals cannot easily pass on the additional fee to insurance companies or patients.
Stephanie Van Hooser, administrative director of the state lab, testified to lawmakers that Oregon's state lab, which Nevada outsourced newborn screenings to prior to 2014 when UNR became the sole provider, has increased their fee from $81 to $175 in the past 11 years.
Newborn screening fees range from $30 in Louisiana to $259 in Rhode Island, according to data from the Association of Public Health Laboratories.
Nevada Medicaid has proposed amending SB348 to include language allowing the state to separately reimburse for newborn screenings. That reimbursement, which could be up to the full $150, would be dependent on available federal and state funding, said top administrator Stacie Weeks.
Weeks added that a fiscal analysis found it would cost the state less than $200,000.
Blayne Osborn with Nevada Rural Hospital Partners said the Medicaid amendment might get the group out of opposition because the majority of their births are covered by Medicaid.
'Tough bill for us to be opposed to but for us it is just that math problem,' he added.
Medicaid covers approximately half of all births in Nevada.
Kelly added that Nevada Medicaid's proposed amendment is 'creative and very appreciated' but that everyone 'has to be realistic' about the state of the program's funding at the federal and state level.
Congress and the Trump administration are looking to cut federal spending, which could lead to severe cuts to Medicaid.
Nevada's newborn screening program has also been supported financially by funding from the DHHS's Health Resources and Services Administration, which is also being targeted for federal cuts.
The Trump administration last month also terminated the Advisory Committee on Heritable Disorders in Newborns and Children, the committee that makes RUSP recommendations to the U.S. Health and Human Services Secretary.
One mom's story
According to Every Life Foundation for Rare Diseases, 13 states have adopted federal RUSP alignment legislation. Nevada is not one of them.
Pompe, a glycogen storage disorder affecting 1 in 40,000 newborns, was added to the RUSP in 2015. But it is not part of Nevada's screening panel. Pompe is one of the conditions state health officials are hoping to screen for in the next few years, with the help of SB348.
But it's too late to help Summer Webb's family.
'Although I love living in Las Vegas and raising my family here, I can't help but regret moving here and having my child here,' the mother of six wrote in a letter to lawmakers. 'I must live knowing that if I would have had my son in California, he would have been screened for Pompe at birth and would have been monitored and receiving treatment sooner.'
Instead, her son went undiagnosed until he was 3 years old.
'What followed was 5 months of life support, ICUs, air ambulances, leaving my other children, complete physical regression, and irreversible damage as he fought for his life waiting to be diagnosed,' recalled Webb, who also testified in person during the bill's committee hearing.
Webb estimates her son's initial diagnosis came with $2 million in medical costs, including hospitalization in Utah and Los Angeles after local hospitals couldn't help. His ongoing care, which includes long-term physical, occupational and speech rehabilitation and weekly enzyme replacement therapy, are around $400,000 annually.
'All of which could have been prevented with a single blood spot test at birth,' she added.
In her letter, Webb criticized the pushback on the bill.
'The math–and the morality–simply don't add up,' she wrote. 'Frankly, it is shameful that any hospital in this state is pushing back on this fee.'
