In Belgium there's yet another controversy about Soliris the trade name of Eculizumab, a drug from the firm Alexion.
Soliris is a orphan drug, effective in the treatment of two rare, life threatening diseases: PNH (paroxysmal nocturnal hemoglobinuria) and aHUS (atypical hemolytic uremic syndrome). "Typical" HUS is the result of a e-coli infection and is 10 times more common than the atypical variant, which has genetical causes.
In 2013 the media picked up a sad story: little Viktor, a 7 year old child, suffering from a rare genetic disease (aHUS) was deprived from a miracle drug which could save his life. Belgian's health system (considered one of the best in the world) did not reimburse a whopping € 234,000/year.
There were lot's of ethical questions about Alexion's lobbying techniques. They indirectly manipulated the parents. Even Pharma.be, the trade organisation for pharma companies in Belgium, condemned the practices and got into a legal quarrel with Alexion.
There was a lot of public pressure on Laurette Onkelinx, then health minister to negotiate a deal. They came to an agreement but the terms weren't made public.
In 2014 another aHUS patient, the 15 year old Elias, shared a movie on Facebook explaining his situation. Because he got a kidney transplantation and a more latent form of aHUS, other terms apply.
Belgian government has yet again to negotiate with Alexion. And perhaps not entirely coincidentally someone has leaked the one page (!!!) agreement from 2013. It seems Belgium got a poor deal: a 5% reduction to a non negotiable price. Sources speak of a blackmailish situation.
This will be a really tough case for the current health minister Maggie De Block. Let's hope for Elias sake everything will be ok.
Of course, the traditional not so effective kidney transplants and dialysis also cost a lot to the community. Pharma companies take a lot of financial risks to develop orphan drugs. Governments already recognise this and have special legislation for companies doing this research.
As far as I can lookup, the Soliris patent expires in 2020.