What Is Spinal Muscular Atrophy?
A hereditary disease that progressively destroys nerve cells in the spinal cord and brain stem is known as spinal muscular atrophy or SMA. Essential muscle activities like swallowing, breathing, walking, and speaking are affected by SMA. Human beings have a gene that produces a survival motor neuron protein to maintain normal functioning of our neurons. SMA causes defects in both copies of this gene. Other types of gene mutations can cause less common forms of SMA. When an individual has only one mutated gene, they can be a carrier of SMA, yet asymptomatic. There are four types of the most common form of SMA:
- SMA Type I, Werdnig-Hoffman disease, is evident prior to six months of age; the infants may have been less active prior to birth and may also be born with significant breathing difficulties. These difficulties can potentially result in death within the first year of life when there is no treatment.
- SMA Type II is an intermediate form of SMA. Symptoms generally manifest between 6 and 18 months, although in some instances the symptoms can appear earlier than six months. A child with Type II SMA may be able to sit up on their own but are rarely able to stand or walk without assistance. As with Type I SMA, respiratory difficulties are common. Whether the child receives treatment for SMA can determine the progression of the disease.
- SMA Type III, (Kugelberg-Welander), typically becomes apparent when the child is older than 18 months old and walking on their own. The child may begin having difficulty rising from a chair, climbing steps, or running. While Type III individuals may suffer from respiratory infections, most can lead a normal life with SMA medications.
- SMA Type IV strikes individuals over the age of 21. The individual may suffer muscle weakness (mild to moderate), as well as certain other symptoms.
The first drug to treat SMA was approved by the FDA in 2016. This drug, Spinraza, is administered into the fluid surrounding the spinal cord. When started early, the benefits of the drug are greatly increased.
FDA Approved Drugs Used for Treating Spinal Muscular Atrophy—and Their Cost
In addition to Spinraza, marketed by Biogen, other approved therapies for SMA include Evrysdi, marketed by Genetech/Roche, and Zolgensma, marketed by Novartis Gene Therapies. According to Forbes, Zolgensma was the most expensive drug in the United States in 2021 at a cost of $2.1 million for a one-dose treatment. Evrysdi (risdiplam) costs about $27,339.33 per month and Spinraza is an injectable drug that costs about $125,000 per injection. Injections are required every two months, resulting in a cost of $750,000 per year, and $375,000 per year after the first year (injections every four months).
Can Your Insurance Company Deny Treatment for Your Spinal Muscular Atrophy?
Unfortunately, due to the high cost of Spinal Muscular Atrophy drugs, insurance companies may deny the drugs, claiming they are still experimental, or not medically necessary. In 2019, a Business Insider report found that at least four parents of children born with SMA reported they were fighting health insurers like Aetna and Anthem to secure access to Zolgensma. One adverse decision made by UnitedHealthcare, was later reversed on appeal. The parents saw the drug as their children’s only hope, saying the barriers to receiving the drug created further inequities in the healthcare system for those with genetic diseases and disabling conditions.
In these specific cases, Aetna and Anthem later changed their coverage policies for Zolgensma. According to Bloomberg, gene therapies like Zolgensma are bringing out the best from our American healthcare system—and also the worst. Since Zolgensma appears to cure SMA in infants and toddlers in one shot, parents understandably want their insurance companies to pay for an otherwise financially out-of-reach drug.
Only about 400 babies per year are born with the most severe form of spinal muscular atrophy but left untreated this disease can be fatal before the child turns two. If you or a loved one have been denied one of these SMA drugs, you may feel frustrated, angry, and overwhelmed. The following insurance companies may have denied your prescription for Evrysdi, Spinraza, or Zolgensma:
What Should I Do if My Health Insurance Company Won’t pay for My Spinal Muscular Atrophy Treatment?
According to Policy Net, as of 2019, eleven of the thirty major insurers had specific policies related to Zolgensma. While those eleven did cover the gene therapy, there were limitations placed by some of the insurers related to age, or whether the patient was symptomatic. As an example, Anthem set out six months as the maximum age for treatment, stipulating infants must show symptoms or have at most, two copies of a related gene (SMN2). (Neither of these additional criteria is upheld by FDA labeling).
New Jersey and Nebraska Blue Cross Blue Shield required infants to be younger than two in order to receive Zolgensma. Nine insurers would not allow concurrent treatment with Spinraza, while HealthNet required patients using Spinraza to prove their disease had progressed before agreeing to pay for Zolgensma. Some insurers only allow for coverage when the patient is symptomatic—even though symptoms may not always be present at a young age.
If your insurance company is denying coverage for one of these SMA drugs, you may wonder what you should do. It can be insulting to know that the people you’ve paid to protect you and your loved ones have turned their backs during a time of need. While you may feel like giving up—don’t. Having one experienced person who cares enough about you and your case to go to battle on your behalf can make all the difference. Attorney Scott Glovsky is that person.
How Can an Attorney Help if I’ve Received an Insurance Denial for Spinal Muscular Atrophy Treatment?
Attorney Scott Glovsky understands what you are going through and will help you get the treatment you need for you or your loved one. At the Law Offices of Scott Glovsky, Scott, his colleagues, and his support staff contribute to your success as they work together as a cohesive legal force. Scott and his team understand the outcome of this insurance denial can impact the remainder of your life and the lives of your loved ones. Attorney Scott Glovsky will do everything in his power to obtain every shred of justice the law allows. Contact the Law Offices of Scott Glovsky today.