When a $2.1 Million Drug Can Save Your Child’s Life (But Insurance Won’t Pay)

Published on December 12, 2019, by Matthew Sharp

Personal Injury

When a $2.1 Million Drug Can Save Your Child’s Life (But Insurance Won’t Pay)

New gene therapies show promising cures for fatal childhood diseases, but insurance companies are denying claims and payments because of high drug costs.

The High Cost of Gene Therapy

Gene therapy drugs that alter DNA claim to cure certain diseases with a single dose, but many insurers will not cover these high-cost treatments. These powerful drugs repair faulty strands of DNA by replacing them with correct strands through injections into a patient’s cells. New gene therapy drugs have the potential to eliminate lethal childhood diseases, rare blood disorders, and serious illnesses such as Parkinson’s.

Although new gene therapy drugs show promising results, insurance companies are fighting against the high cost of treatments. Some insurers are limiting benefits or denying payments, causing life-threatening consequences to children who need the drugs to survive. Although most therapies involve a one-time injection, the cost of treatment can range from $300,000 to as much as $2 million.

Zolgensma, a gene therapy treatment for spinal muscular atrophy (SMA), is causing a stir with a whopping price tag of $2.1 million. As the first gene therapy drug approved by the FDA, parents of children diagnosed with SMA are scrambling to get the drug. One injection of Zolgensma appears to cure the muscle-destroying disease that’s often a death sentence for infants and toddlers with SMA. All major health insurers cover Zolgensma treatments, but most have restrictions on coverage and payments. Some insurers including Anthem Blue Cross Blue Shield limit access to drugs unless patients exhibit symptoms prior to 6 months of age.

In one case of an Ohio family, their 3-year-old son was diagnosed with SMA, even though he showed no systems. Doctors recommended Spinraza, the most affordable treatment option for the family. Spinraza, unlike Zolgensma, is not a one-time dose, but must be given every few months for life. The first year of treatment was $750,000, followed by annual drug costs of approximately $375,000. The family’s health plan, managed by Anthem Blue Cross Blue Shield, excluded coverage for any type of gene therapy, regardless of the patient’s age, disease, or general health condition. Access to Spinraza and Zolgensma were denied.

Injury attorneys around the country see similar cases involving health insurance claims and payment denials to policyholders for all types of high-cost medical treatments. Unfortunately, this often results in fatal consequences for infants and toddlers with SMA and adults with life-threatening conditions.