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A story... about real people medicine and law not working ... @ChrisMRiches @ellenthoen @deb_cohen
I know many people with pku who would have happier healthier lives if the could take the medication #kuvan.
This drug was launched in 2008 by #Biomarin but had been used before.
I know many people with pku who would have happier healthier lives if the could take the medication #kuvan.
This drug was launched in 2008 by #Biomarin but had been used before.
#Biomarin priced their drug highly because they said they did lots of research.
The European Union granted Biomarin a 12 year exclusive right (ie a monopoly) to reward them for developing a drug for people with a rare disease.
The European Union granted Biomarin a 12 year exclusive right (ie a monopoly) to reward them for developing a drug for people with a rare disease.
The NHS has never so far agreed to buy #Kuvan, for 12 years.
This has been a problem for people with pku as the condition can harm the brain and the existing treatment is a miserable grind.
BioMarin haven’t been too bothered as they made 2 billion dollars
selling abroad.
This has been a problem for people with pku as the condition can harm the brain and the existing treatment is a miserable grind.
BioMarin haven’t been too bothered as they made 2 billion dollars
selling abroad.
The European Patent Court has decided (after lots of very very slow procedural stuff) that BioMarin didn’t invent #kuvan and was never entitled to a patent. Well, well ...
So I wonder... why did the EU grant a 12 year monopoly for NOT inventing a drug?
What happens to all the heartache of all the people who did not get treatment?
The people who were desperate and paid their savings to buy BioMarin drugs?
Lots of suffering, lots of profit, but why?
What happens to all the heartache of all the people who did not get treatment?
The people who were desperate and paid their savings to buy BioMarin drugs?
Lots of suffering, lots of profit, but why?
