Insurance Company Backtracks, Will Cover Cost of Lifesaving Care for Newborn Twins

An insurance company recently announced it is changing course and setting up a special multi-million dollar fund in support of a family whose newborn twins need a life-saving treatment, the costs of which the company previously said it could not cover.

Newborn twins Eli and Easton Reed were born on March 31 at St. Luke’s Hospital in St. Joseph, Missouri. Just days later, doctors informed the twins’ parents, Amanda and Austin Reed, that Eli and Easton were diagnosed with spinal muscular atrophy (SMA), “a progressive genetic disorder that kills nerve cells in the brain and spinal cord,” according to LiveAction:

The National Institute for Neurological Disorders and Stroke states that there are different forms, including Types I, II, III, and IV with Type I being the most severe.

Without treatment, most children with Type I will die before the age of two as they progressively lose the ability to walk, swallow, and breathe.

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There is a new single-dose life-saving treatment with a medication called Zolgensma, created by the pharmaceutical company Novartis, that can stop the disease’s effects from spreading. However, the medication costs approximately $2.1 million per patient, making the costs of the life-saving treatment for the Reeds $4.2 million.

“Without the treatment, the deteriorating effects of SMA could set in within six months, causing the boys to never be able to sit independently and likely die of respiratory failure by age two. SMA is progressive and Zolgensma can’t undo damage that is already done,” LiveAction reported. “It stops the disease’s effects from progressing, so the sooner it is administered, the better.”

The Reeds began appealing to their insurance company, Mosaic Life Care in St. Joseph, for help covering the costs of the life-saving treatment.

Amanda Reed’s stepsister, Kecia Vant Hof, started a GoFundMe for the family on April 18 which has since raised over $400,000.

On April 26 Mosaic Life Care denied the parents’ requests for help and refused to cover even some of the costs of the treatment.

However, the situation turned for the better on May 3, when the insurance company announced the creation of a special fund that will assist in covering the costs of the life-saving medication to treat SMA.

“We are pleased to announce the creation of a $3.4 million dollar philanthropic fund through the Mosaic Life Care Foundation for the purpose of supporting genetic treatment for rare genetic neuromuscular diseases such as Spinal Muscular Atrophy (SMA),” stated Mosaic Life Care CEO Mike Poore on the company’s Facebook page.

“These critical funds are the result of a heroic $1.9 million dollar anonymous donation and a $1.5 million dollar gift from Mosaic Life Care. These funds are immediately available for the timely delivery of the gene therapy treatment Zolgensma,” the statement continued.

Poore added that Mosaic Life has been striving extensively “behind the scenes to successfully secure substantial additional support for the treatment of SMA.” Poore added that the company hopes the efforts will lower the cost of the treatment overall.

Any of the funds that are not needed for the treatment of SMA will be returned to the donors, the statement noted.

Just a day before the insurance company’s announcement, Vant Hof told news outlet KQ2 that people both locally and from across the country have continued to rally around the Reeds.

“Everyone is just reaching out from across the country and wanting to help any way they can, whether it’s with donations or support groups or linking us to people who have children who also have been diagnosed with SMA,” Vant Hof said.

“My family, in particular, has stayed very strong in their faith,” she added. “And you know, we’ve been praying and reaching out to our church groups and everything like that. And so, I’m just hopeful that these boys have a bright future, and they can spread their story and their love to the rest of the world too, as they grow up.”

Vant Hof reiterated her hope for the twins’ future in an update posted to the GoFundMe on May 3.

“We had paused the go fund me a couple of days ago, but many people have continued to reach out wanting to continue to donate for the boys and their medical futures even if we are able to get the gene therapy covered. So for now, people can continue to donate if they feel led to do so,” the update reads.

She expressed gratitude for the ongoing donations that will go towards future medical bills for the twins, adding, “Many powerful people in the state of Missouri are working so hard to make sure the boys get the medication they need and we appreciate any support/encouragement as we continue this process. Again, thank you all so so much.”

LifeNews Note: McKenna Snow writes for CatholicVote, where this column originally appeared.

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