Mom wins fight for $2 million medicine for infant with neuromuscular disorder

INDIANANAPOLIS, Indiana -- A mother in Indiana refused to give up on her infant son suffering from a neuromuscular disorder, even when an insurance company and a $2 million price tag stood in her way.

Baby Anthony was born four months ago. For most of his life, he has been hooked up to machines at Riley Hospital in Indianapolis.

Mom Louise Johnson only makes trips back home to Evansville every two weeks as her son fights spinal muscular atrophy. It's the number one genetic cause of death for infants.

"We were not given an exact timeline of his life but we said up to two years is what we were told," she told WXIN-TV.

The disease robs people of physical strength, taking away the ability to walk, eat or breathe.

"Not knowing when we were going to say our goodbyes or how long we would have with him, if we would have his first birthday with him," said Johnson.

For the Johnson family, treatment options were limited and expensive. One dose of medication that could help him live longer and improve his quality of life costs more than $2 million.

"No mom wants to bury her child, so I just want to see him grow up with his brothers and play with his brothers," said Johnson.

After she says Indiana Medicaid denied her claim, she fought and filed an appeal and the program approved it.

Anthony recently received his medicine through an IV. Now, they just have to wait and see if it will work.

"Does his respiratory function improve? Is he able to work more fully without as much ventilator support?" said Dr. Larry Walsh, Pediatric Neurologist.

Dr. Walsh says he's optimistic.

"Where we do help his respiratory function when he does not need to be in a ventilator things like that, that would be a tremendous win for him and his family," he said.

Anthony's family is nervous about the unknown, yet his mom hopes her son's future includes leaving the hospital soon with a second chance at life.

"It is a chance at life, with a better quality of life," she said.

The FDA approved Zolgensma in 2019, the first gene therapy approved to treat infants with spinal muscular atrophy.

Indiana Medicaid said prior authorization is based on clinical evidence only and cost is never a factor.