A life-saving treatment can take years to be discovered. Then, it takes more time — years, even decades — to go through clinical trials in order to gain FDA approval. Sadly, that approval means nothing if your insurance company denies you access to the right treatment.
That’s the story with Duchenne muscular dystrophy access to treatment.
Insurance giant Anthem says it plans to deny patients with Duchenne muscular dystrophy access to the only FDA-approved treatment for the rare disease. According to Anthem, the only treatment option for thousands of boys is “considered investigational and not medically necessary.”
We’ll say that again: Anthem thinks the only treatment for patients with a rare and fatal disease that results in progressive muscle deterioration and weakness is “not medically necessary.”
As our executive director Terry Wilcox wrote earlier this year, “This treatment on trial before the F.D.A. Advisory Committee proved optimistic to the few boys able to enroll in the small trial, and yet it is only for 13% of Duchenne’s patients. Depending on what statistics you read, that’s less than 3000 boys in the U.S.”
For more background on the long fight over this treatment, check out our post from September.
Anthem’s opinion that the only FDA-approved treatment is ” not medically necessary” is contradicted by doctors. You know — the people who are trained to make medical decisions.
Earlier this year, Stat News reported that 70 percent of neurologists who treat Duchenne are “fairly convinced that the drug is sufficiently effective to justify its use, and 82 percent expect their patients to start experiencing a benefit within six months.”
If a treatment is approved by the FDA and has the overwhelming support of neurologists — how can an insurance company deny a treatment? This is exactly what we’re fighting against. We believe every patient should have access to the right treatment prescribed by their doctor.
By the way, Anthem reported second quarter net income of $780.6 million, with $21.46 billion in revenue. Patients paid billions of dollars to an insurance company in order to receive health coverage. Not denial letters.
“We hope that insurers will understand the unmet need in Duchenne and will allow physicians to use their professional opinions to prescribe and monitor the benefits of all approved drugs.”
— Debra Miller, CEO of non-profit organization CureDuchenne, which provided Sarepta early funding to develop the drug, in an interview with Reuters.
Fortune’s Sy Mukherjee explains the significance of Anthem’s decision and why it “could prove to be a major barrier to patients and their families.”
As one of the country’s largest insurance companies, Anthem denies coverage and erects barriers to access for more than 38 million patients.
Rather than viewing Anthem’s size as a negative, we see it as a positive. That’s 38 million patients who can potentially speak up. The fight for FDA approval was the result of patient engagement. Patients spoke up, and to its credit, the FDA listened. Now, it’s time to mobilize that same patient engagement with Anthem.
“Our voices, our children’s voices, were heard through our advocacy, our unwillingness to stand down, and our irrefutable defense of a safe drug that has the potential to save lives,” the Jett Foundation, a nonprofit that raises money for Duchenne Muscular Dystrophy research, said back in September. “We are still foot soldiers in this war, there is so much work left to do and so many battles left to win.”
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