Update 5/9/2024: Kecia Vant Hof, the organizer behind the GoFundMe page for Eli and Easton Reed, who were initially denied life-saving treatment for Spinal Muscular Atrophy (SMA), has announced that the twin newborns will be receiving the treatment next week.
In an update posted to the GoFundMe page, she wrote, “I want to personally thank each and every one of you for being so generous during my sister and her family’s time of need. Your love and encouragement has been such an incredible blessing.
“Due to all of you, the news media outlets who shared Eli and Easton’s story, and a powerful God, Eli and Easton WILL be receiving the gene therapy NEXT WEEK!! We are so blessed and thankful that the boys will have a fighting chance and we cannot thank you all enough.”
Vant Hof said that the GoFundMe has been closed but the $400,000 that was received so far will be used for any upcoming necessary treatments the boys may need.
Update 5/8/2024: Shortly after news broke that newborn twins Eli and Easton Reed had been denied the life-saving medication Zolgensma to combat Spinal Muscular Atrophy (SMA), the company that had denied the coverage, Mosaic Life Care, announced a new fund to help pay for the treatment. Mosaic Life Care, where the mother of Eli and Easton, Amanda Reed, works, is reported to have ended coverage of the life-saving drug that Eli and Easton need just one day after the boys were born and four days before they were diagnosed with SMA.
“Children’s Mercy, because that’s where we would be going for the treatment, tried to ask them if it could be covered since they were born a day before the cut, and they were denied,” Reed said. She added that the diagnosis and denial of coverage has “been a nightmare, an absolute nightmare.”
In a May 3 statement, Mosaic Life Care announced it established a fund to support treatment for rare genetic neuromuscular diseases such as SMA. It said it contributed $1.5 million to the fund after it received a $1.9 million anonymous donation. The money is said to be immediately available for the delivery of Zolgensma.
“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),” said Mosaic Life Care CEO Mike Poore. He added, “Using our extensive government, hospital and medical connections, we have been making exhaustive efforts behind the scenes to successfully secure substantial additional support for the treatment of SMA.”
5/3/2024: An insurance company is coming under fire for denying the coverage of life-saving treatment to a set of twins who will otherwise likely die before their second birthday.
People Magazine reported that Eli and Easton Reed were born on March 31, 2024, and shortly after they were both diagnosed via newborn screening with Spinal Muscular Atrophy (SMA), a progressive genetic disorder that kills nerve cells in the brain and spinal cord. 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.
However, new hope has come in the form of a single-dose treatment of a medication called Zolgensma, which is being called a “miracle drug.”
In 2021, Live Action News reported the story of baby Joseph Crew Delia who was diagnosed with SMA after birth and was given the one-time IV infusion of Zolgensma, which targets the genetic root cause of SMA and can prevent the deteriorating effects of the condition. The life-saving medication, however, costs $2.1 million. While Crew’s insurance covered $500,000 of it, his parents raised funds to cover the rest. Today, he’s a healthy toddler.
Eli and Easton Reed each need a dose, making the out-of-pocket price tag for their parents $4.2 million — and insurance is refusing to cover any of the cost.
“Time is of the essence with this … since they don’t have symptoms as of right now,” the twins’ mother, Amanda Reed, told KMBC. “It’s best for them to receive this treatment now. Because once symptoms start, it’s un-reversible. So, time is of the essence, but we are still trying to explore all of our options.”
A GoFundMe was created to help raise money for treatment while the boys’ parents appealed the insurance company’s decision. But on April 26, the insurance company denied the appeal.
“I’m holding my heart in my hands,” the twins’ father, Austin Reed, told KMBC.
“The fact that their life is in somebody else’s hands, whether they get this treatment or they don’t, you know, then that’s somebody else’s choice and that’s hard to cope with that right now.”
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.
It stops the disease’s effects from progressing, so the sooner it is administered, the better.
