A family said they had to fight for their daughter’s life after her healthcare provider denied coverage for a drug known as the world’s most expensive drug.
The family said doctors told them the one-time infusion, which costs more than $2 million, was their daughter’s best hope.
Aniya Porter was born with a rare genetic condition called spinal muscular atrophy (SMA).
SMA gradually kills motor neurons, nerve cells in the brain stem and spinal cord that control essential functions like speaking, walking, swallowing and breathing.
The disease is degenerative. Aniya’s parents, Will Porter and Hailey Weihs, said that with each passing day without the $2.1million treatment, Aniya could lose more of these essential life functions.
After working with a lawyer in Chicago and the NBC 5 Responds team in Dallas, things got better.
To read the full story and learn more about the treatment, click here.
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