Skip to main content
Premium Trial:

Request an Annual Quote

For Coverage

Parents of patients with spinal muscular atrophy are pushing to get insurance coverage for the gene therapy Zolgensma, the Washington Post reports. SMA causes paralysis, breathing difficulties, and is a leading genetic cause of death among infants.

The US Food and Drug Administration approved Novartis's Zolgensma in May for children under the age of two who have one of three forms of spinal muscular atrophy, as determined through genetic testing. Novartis announced that Zolgensma, which is a one-time treatment, would cost $2.1 million.

As the Post reports, insurers like UnitedHealthcare are denying some applications for treatment. For instance, it notes Lauren Sullivan has been fighting to get coverage for her 21-month-old daughter who has type 3 SMA, a more mild form of the condition, which the Post says may be working against her as she's not as ill as other patients. "Daryn is an ideal candidate for this medication, because it could be a cure for her,'' Sullivan says of her daughter to the Post. "She may not have to be in physical therapy for the rest of her life.''

Similarly, it reports that UnitedHealthcare also denied Rajdeep Patgiri's daughter the treatment.

In an email, UnitedHealthcare tells the Post it "will continue to provide access to Zolgensma in accordance with the emerging clinical evidence for treating spinal muscular atrophy."