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Midnightwalk

(3,131 posts)
5. Some more information
Thu Dec 5, 2019, 10:45 AM
Dec 2019

I was curious so I did some searches.

First Zolgensma is a single dose gene therapy that stops the progression of SMA.

ZOLGENSMA is an adeno-associated virus vector-based gene therapy indicated for the treatment of pediatric patients less than 2 years of age with spinal muscular atrophy (SMA) with bi-allelic mutations in the survival motor neuron 1 (SMN1) gene.

https://www.zolgensma-hcp.com/?gclid=EAIaIQobChMIxun6seSe5gIVQx6tBh3YywJIEAAYAiAAEgJEV_D_BwE]

As of May 2019 the NHS had negotiated a better price on the previous drug Spinraza. Spinraza was the first and only approved treatment for SMA.
Spinraza, which is administered by spinal injection every four months, has a U.S. list price of $750,000 (£581,122) for the first year and $375,000 (£290,561) annually thereafter.

Britain’s healthcare cost agency, NICE, said in August it could not recommend Spinraza as a cost effective treatment. The rejection came despite a lower British price tag of 450,000 pounds for the first year and Biogen offering an undisclosed discount to the National Health Service.

https://uk.reuters.com/article/uk-biogen-england/nhs-england-biogen-reach-deal-on-pricey-drug-for-deadly-disorder-idUKKCN1SK2QH]

The UK was able to get the previous treatment at half the price than the US but didn’t approve it until they negotiated an even lower price. The article says the NHS wouldn’t disclose that price.

I’d think that as a one time treatment Zolgensma would be cheaper, but I couldn’t find anything about where the NHS is in the process of deciding whether to approve.

My conclusions are that Americans are clearly being gouged by pharmaceutical companies. But also any healthcare system will make decisions on what treatments are affordable. I hope the NHS decides to approve Zolgensma.

I’d also prefer to be under a consistent more rational and functional system such as the NHS even though I disagree with some here about how to get there.

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