After appeal by families one major insurer has reversed and will now cover the cost for Zolgensma as of mid July, 2019.
Just a few weeks ago Klal Yisrael came together and raised over $2 million dollars for Chana bas Shani a 2 year old girl who was diagnosed with a rare disease of SMA. The miracle drug Zolgensma can reverse the disease but is labeled as the most expensive drug for a single dose at a cost of $2.1 Million. Their insurance company would not cover the drug. In a race against time before the 2 year birthday Klal yisrael responded and the funds were raised and she received the drug B"H..
Other parents of young children with the rare and fatal disease were denied coverage by their insurance companies claiming they plans don't cover gene therapy and that the cost is too expensive. The drug maker justified the cost and said the one-time treatment was half the cost of 10 years of treatment with an existing SMA drug. NBC reports the only way parents can pay for it is through a hail Mary Gofundme site.
After appeal by families one insurer UHC has reversed and will now cover the cost. A spokesperson said that media attention on the families' struggles did not play a role in the decision and that it was based on evidence that the drug works.
UnitedHealthcare Group Inc. has reversed course and will now cover a $2.1 million gene-editing
therapy for some previously denied young children. The health care insurance giant said Thursday it will cover all six (four previously) coverage requests it received for the treatment that the Food and Drug Administration recently approved. The Washington Post has the story and reports on some of the families' relief from the decisions.
The drug involved is called Zolgensma and is intended as a one-time treatment for spinal muscular atrophy. Zolgensma, produced by Novartis Corp., is intended to use in children under 2 years old.
UnitedHealth Group's chief medial officer, Richard Migliori, told the Post that media attention on the families' struggles did not play a role in the decision and that it was based on evidence that the drug works. Bizjournals
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