Spinal Muscular Atrophy (SMA) Drugs

Spinal muscular atrophy (SMA) is a genetic disease that causes debilitating muscle weakness. In its most severe form, SMA leads to paralysis and ultimately, permanent ventilation or death by age 2. Most cases of SMA are this severe form (Type 1), but some patients may have a less severe form of the disease that progresses slower. Currently, Zolgensma^® (onasemnogene abeparvovec-xioi), made by AveXis, Inc., a Novartis company, and Spinraza^® (nusinersen), made by Biogen, are the only two treatments available for specific cases of SMA.

Blue Cross and Blue Shield of Louisiana and its subsidiary, HMO Louisiana, Inc., have a medical policy in place to cover Zolgensma and Spinraza for our fully insured customers according to strict medical necessity and prior authorization requirements.

Today, the average wholesale cost of Zolgensma is $2.125 million* for a single IV infusion per lifetime. Today’s average wholesale cost of Spinraza injections is $750,000 for the first year, then $375,000 for each year of life thereafter. Clinically, there is no known benefit to combining these drugs. Both have been shown to be highly effective in halting the effects of SMA.

Health insurance was created for situations like these. We aim to be there for our customers, providing access to this life-saving care that could otherwise be out of reach financially.

While Louisiana Blue covers these drugs for fully insured customers, self-insured employer groups make their own decisions about whether to cover these drugs for their members.

For self-insured employers, the cost of these drugs would be paid by the employer. If members or their dependents must have a drug or therapy that their self-insured employers do not cover, we encourage them to speak with their human resources department about their options.

We continuously review and make decisions based on clinical studies and other criteria as gene therapy treatments like these enter the market. Louisiana Blue medical policies are available at bcbsla.com/medicalpolicies.

*All prices are wholesale acquisition cost as of Sept. 26, 2019.