UPDATE: Insurance Approves $2.2 Million Treatment for Fargo Child
UPDATE – Zoya’s family says it has approved medication for their child.
“Today, we have approved Zolgensma in an expeditious and responsible way because we recognize its lifesaving potential for members who need such therapies. We remain member-focused and will continue to work to cover the best-in-class therapies available for our members,” Sanford Health Plan said in a statement.
Zoya’s family will still have to raise $2.2 million for treatment.
A GoFundMe account has raised more than $8,300. You can donate by clicking here.
FARGO, N.D. – Zoya Pandey’s first name means life. Right now, her parents say they are doing everything in their power to give their daughter the best one possible.
Smriti Bista and Binod Pandey say their daughter was perfectly healthy when they brought her home from the hospital. Six weeks in, they noticed she could only slightly move her head, fingers and toes.
Zoya has spinal muscular atrophy, a rare genetic disease causing severe muscle loss.
In May, the FDA approved a gene therapy treatment that would create the protein Zoya is missing to help her muscle function, but it costs $2.2 million and her parents were denied insurance coverage.
“Someday, we certainly want her to see her crawl if not walk and live an unassisted life if she is able to live in a wheelchair. We can work with that but she needs to live. She needs to have that life she deserves,” Bista said.
In a letter, Sanford Health Plan says Zoya was denied coverage because the treatment is not considered a “covered benefit.” The insurer has 180 days to review new treatments before it can be considered.
Zoya’s parents say they tried to file an appeal through their doctor and Sanford has told them they are trying to review the new treatment sooner.
Sanford was not available for comment.
According to the National Institute of Neurological Disorders and Stroke, infants like Zoya who have SMA type one usually die by the age of two because of respiratory failure.