Insurance Denies Newborn Twins Life-Saving Treatment for Fatal Genetic Disorder: 'Hard to Cope' (2024)

Although health insurance is costly, it’s intended to help families cover more costly medical bills. However, in a heartbreaking tale, they’ve denied coverage for life-saving treatment for twins Eli and Easton Reed.

Born with a Rare Condition

Eli and Easton Reed were born in St. Joseph, Missouri on March 31, 2024. Sadly, they were born with spinal muscular atrophy, a rare but often fatal genetic condition. Although there is no cure there are numerous treatment options including a medication called Zolgensma. The treatment is a one-time medication that could inhibit the progression of the condition, and “targets the genetic root cause of spinal muscular atrophy,” according to the medication’s website.

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Health Insurance Cancellation

Oddly, the family’s health insurance stopped covering the medication the day before the twins were born. The health insurance company then “called an emergency meeting to review all of the information to decide whether or not they will allow their insurance to cover the gene therapy the boys need.” The family’s GoFundMe page explained. However, on April 26th, the appeal was denied. As a result, the family started the page after learning they would need to pay out of pocket, and that the life-saving medication is “between$1 million and $2.5 millionper child.” The page added. “A daunting amount that we are striving to secure through insurance appeals and your continued support.”

Distressed Parents Address Concerns

“Time is of the essence with this … since they don’t have symptoms as of right now,” the twins’ mother, Amanda Reed, toldKMBC.“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.“

Meanwhile, their father added: “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.”

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Understanding the Condition

According to Medical sources, things don’t look good for the twins if they’re unable to afford the treatment and their health insurance coverage doesn’t change. For example, Cleveland Clinic explains that “infants with type 1 SMA“, symptoms that appear in the first 6 months of life, “usually die before their second birthday.” Meanwhile, the National Library of Medicine notes that “Patients less than six months of age at disease onsetwill never sit independentlyand will likely die of respiratory failure before two years of age.”

The disease is so rare that only 1 in 6,000-10,000 children are diagnosed. And roughly no more than 25,000 adults in the U.S. are currently living with the condition. Although the disease is rare, the genetic mutation is not. As many as 1 out of every 50 Americans carry the gene but in cases where both parents have the gene, the likelihood that a child will be diagnosed becomes 1 out of 4. Moreover, there are 4 types of the disorder ranging from mild to severe, with the 4th, becoming prominent in adulthood.

Health Insurance Crisis

Health insurance is difficult to navigate because it’s becoming more costly. In fact, health insurance was predicted to hit a 10-year high in 2024. This means families will continue to struggle for necessary and life-saving treatments. Meanwhile, employers’ health insurance costs will rise to about 8.4%, more than 3% more than last year. Experts deem the cause a culmination of medical inflation and a higher demand for certain prescriptions and “cellular therapies“. While the Reeds have health insurance, their coverage has changed, another problem for families in the U.S. Despite having health insurance, many families are also facing higher co-pays and costs for prescriptions while fewer of their treatment options are covered.

Other countries have impressive healthcare models that include healthcare for all citizens. Furthermore, healthcare treatments and medications are also less costly, presenting the idea that America views healthcare as a business endeavor rather than ensuring the health and well-being of its citizens. A recent update regarding the twins’ condition came from their aunt, who shared that the boys will be getting the treatment that they need, and the GoFundMe page has racked up nearly half a million to help increase the odds of the boys making it to their second birthday.

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