Family says coverage for specialized treatment for twins with rare condition obtained before hospital announcement of specialized fund
By JoBeth Davis & Dennis Evans
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SAINT JOSEPH, Missouri (KMBC) — Days after the story of newborn twins from St. Joseph, Missouri, born with a rare condition, went viral nationally after they were denied life-changing treatment, the family says they’re in the process of securing coverage for that treatment.
The source of that coverage has been, and continues to be, a pain point for the family of Eli and Easton Reed.
The boys graduated from the neonatal intensive care unit at St. Luke’s Hospital in Kansas City and headed home to St. Joseph earlier this week.
Days after they were born, Eli and Easton were diagnosed with a rare condition.
The condition is one that, without proper treatment and medication, means their life expectancy is less than two years: spinal muscular atrophy.
SMA is a genetic condition that affects nerves and muscles, causing progressive weakness and wasting.
A gut punch for any new parents, the matter was made worse when they discovered a recent insurance policy change meant the boys were denied coverage for a treatment that could potentially stop the disease in its tracks.
That insurance policy was through Amanda Reed’s employer: Mosaic Life Care in St. Joseph.
More frustration came after an appeal was denied.
“I’m holding my heart in my hands and just the fact that their life is in somebody else’s hands,” the boys’ mother, Amanda Reed, told KMBC on Monday. “Whether it be that they get this treatment or they don’t, you know, and that’s somebody else’s choice. And it’s just hard to cope with that right now.”
Support for the family poured in from across the country as people donated to a GoFundMe hoping to help raise part of the $4.2 million that would have been needed for Zolgensma, the life-changing gene therapy treatment needed by both twins.
Family members learned this week that they would be able to obtain coverage for Zolgensma for Eli and Easton, though they don’t yet have the treatment in-hand.
Family members tell KMBC 9 News that they were in the process of securing coverage for the twins before an announcement was made by Mosaic Life Care in St. Joseph, Friday.
In a statement from CEO Mike Poore posted to Facebook Friday, the hospital announced the creation of a $3.4 million philanthropic fund for the purpose of supporting genetic treatment for rare neuromuscular diseases like SMA.
Officials said the funds come from a “heroic” $1.9 million anonymous donation, along with a $1.5 million gift from Mosaic Life Care.
While the Reed family was not mentioned in the release, the statement from Poore and Mosaic went on to say, “These funds are available for the timely delivery of the gene therapy treatment Zolgensma.”
Poore’s statement was posted to social media in what the hospital called “an important time of need.”
The statement went on to say that every penny of the fund will benefit SMA gene therapy treatments. If, for some reason, the funds were not needed, they would be returned to the respective donors.
The hospital added that the administration of this particular fund helps protect patients and their families from tax liability.
Regardless of the source of the coverage for the treatment, the family told KMBC 9 News they are grateful for the support of the community, which gave them hope that help would be found.
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