Page 18 - Mobility Management, November/December 2021

ATP Series
SMA: What’s Next?
scores,” Wexler said, though a 14-year-old patient who experi- enced a 59-day delay in receiving the nusinersen dose did show “a marked worsening of scoliosis,” the research said.
Researchers did evaluations after the children received their second infusion treatments during the pandemic lockdown; the second infusions were not delayed and were given four months after the previous infusions. Researchers found that 10 patients (40 percent) “showed a reduction in the functional score, whereas eight patients (32 percent) showed an improvement.”
Study results suggested that caregiver support significantly impacted the children’s functional scores in at least some cases. The children with the greatest reductions in functional scores were a patient who’d experienced the 59-day infusion delay and presented with significantly worsened scoliosis; a patient with “a single and fatigued parent as a sole caregiver”; and a patient “with a difficult social situation and parents who experienced depres- sion due to loss of their jobs.”
Parents were asked about changes in their children’s muscle strength, swallowing and breathing functions. Forty percent of parents whose children experienced loss of function said those changes “are mainly due to the suspension of outpatient physio- therapy,” while 24 percent of parents said their children’s loss of
function was due to delays in receiving nusinersen. Researchers concluded that a child’s support system at home
during the pandemic lockdown was crucial. “Children who had both parents caring for them and helping each other during the lockdown showed the best improvement in motor function, while in the presence of social issues, above all in single-parent families, children suffered a lack of home institutional help,” they said. “The great worsening [in function] was seen in both the short- and long-term evaluations and cannot be attributed to the delay in infusions but to a difficult family situation of the patients.”
A Third Treatment Is Now Available
In August 2020, the U.S. Food & Drug Administration approved Evrysdi (risdiplam) to treat adults and children with SMA who are at least 2 months old. An Aug. 7, 2020, announcement by Cure SMA said the treatment “showed clinically meaningful improvements in motor function across two clinical trials in people with varying ages and levels of disease severity, including Types 1, 2, and 3 SMA.”
Evrysdi works “by helping to make and maintain more SMN protein,” according to Genentech USA, the manufacturer. It’s taken once daily in liquid form orally or through a feeding tube,
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