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Parliamentary questions
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14 January 2020
P-000202/2020
Priority question for written answer
to the Commission
Rule 138
Emmanuel Maurel
 Subject: Spinal muscular atrophy (SMA) — Zolgensma — Novartis

Spinal muscular atrophy (SMA) is a genetic disorder that results in the loss of motor neurons, causing patients to choke and reducing their life expectancy. Children with the condition can be cured by administering a new medicine, Zolgensma. This medicine, which was developed mainly as a result of French public research into the genome at Necker Hospital and Telethon donations, is being marketed by the multinational Novartis. That laboratory has decided to make the medicine available free of charge to 100 children chosen by drawing lots, and to market it for EUR 2 million.

Quite apart from the abject nature of this approach, which is making the lives of sick children the subject of a lottery, this is the outcome of a disgusting form of capitalism which profits from a pharmaceutical trade partly financed by public research work.

What measures will the Commission take to ban such lotteries?

How long will it be necessary to wait before a system of automatic or compulsory licensing is introduced, which will enable public authorities, for reasons of public interest, to allow third parties to exploit a patent without the owner’s consent?

How does the Commission intend to quickly resolve the serious problems caused by the current methods by which prices are set for medicines? On what basis does the Commission intend to force pharmaceutical traders to set more transparent, objective and binding prices?

Last updated: 16 January 2020Legal notice