The update revises the criteria for Spinraza in the treatment of onset of SMA-associated signs and symptoms to children younger than 21 months old. The previous policy limited treatment to babies six months or younger who showed onset of symptoms.
This decision carries important implications for families looking at private insurance policies for babies affected by the disease. Anthem is one of the largest private health insurance companies in the U.S., listed as second only to United Healthcare by Forbes.
The nonprofit Cure SMA organization began an insurance coverage and payment policy project in 2016 due to the high price of Spinraza treatment. At $125,000 per vial, the cost of the first year of treatment varies between $625,000 and $750,000 for five or six injections. After the first year, three injections are usually needed.
Cure SMA’s project educates the public, along with private and government stakeholders, on the necessity for drug access, health insurance, and general payment of SMA care and treatment.
The association welcomed the expansion in insurance coverage to families of children with the disease.
“We commend Anthem for listening to our community’s advocacy, and expanding their policy for Spinraza,” said Kenneth Hobby, president of Cure SMA. “We will continue to work with Anthem, other commercial insurers, and state Medicaid boards to press for coverage of all ages, types and stages of SMA.”
Anthem’s updated insurance policy emphasizes the need to discuss insurance and reimbursement for SMA care, and to ensure that treatment is available to all SMA patients, regardless of their age, disease type and stage.
Cure SMA published a booklet, the Choice and Connection to Care: A Health Insurance Roadmap for People Living with Spinal Muscular Atrophy (SMA) and Their Caregivers, to help families understand and become familiar with the most common issues and questions concerning insurance coverage and payment.
Spinraza is the first U.S. Food and Drug Administration (FDA)-approved treatment for SMA. The drug is not a cure, but the results of the ENDEAR clinical trials showed that a significant number of SMA babies (40 percent) given this treatment significantly improved their motor capacities, including head control, sitting, the ability to kick in supine position, rolling, crawling, standing and walking.
Cure SMA encourages families to apply for insurance regardless of their insurer’s policy, because their application may be eligible for other programs funding Spinraza treatment. Families applying for insurance can give feedback to Cure SMA about their application status.