Heartbreak in Tennessee: 6-Year-Old Boy Denied Life-Saving Gene Therapy by Insurance Company
Athens, Tennessee — Cooper Wood, six years old, was diagnosed with Duchenne muscular dystrophy earlier this year. When his parents sought for a one-time gene therapy infusion for Cooper, which is medically permitted, Blue Cross Blue Shield of Michigan denied the treatment in a single day.
“Blue Cross Blue Shield is just letting our children have a death sentence without a second thought,” Cooper’s mother, Kaylin West, stated.
Duchenne muscular dystrophy is a rare genetic illness that causes muscle weakness and damage owing to abnormalities in the dystrophin gene, which is required to maintain muscle cells intact.
Cooper’s current treatment is steroids, which simply halt the muscle atrophy. The sickness progresses to the point of death.
When asked about Cooper’s future with only these steroids, his parents replied, “In a wheelchair.” His capacity to approach an adolescent. During his teen years, his organs will be further impacted, and most youngsters do not live until their twenties.
There is one alternative option: Elevidys, a $3.2 million one-time gene treatment that Cooper has received medical approval for.
The family has insurance via BCBS of Michigan because that is where their job is based. They applied for this treatment on August 20, but on August 21, the insurance company denied it.
“He deserves more than one day of deliberation,” Kaylin explained.
Blue Cross Blue Shield of Michigan informed Kaylin that Elevidys is considered experimental for all indications due to a lack of data demonstrating benefits from its use. However, in June, the FDA approved this medication for anyone aged four and up who had a proven DMD gene mutation. Part of the approval was based on findings from numerous studies including 218 male Duchenne patients.
Vanderbilt Hospital has filed an appeal against the insurance company’s decision, but time is key.
When asked for a statement, BCBS of Michigan responded, “There is insufficient evidence that Elevidys provides a clinical benefit in patients with Duchenne muscular dystrophy.”
Cooper’s parents have launched an email asking for anyone with a similar tale to send any resources that could help him fight for this treatment.