This Op-Ed was written by the NGO Santé Diabète and us. It was published in the sciences columns of Le Monde (2020/01/08) : « How dare it be claimed that there is not enough money for the staff and patients of the hospital to have decent conditions when one pays twice, and by the billions, for health products, while at the same time refusing to document the relevance of their price? »
[Translation by : Translators without borders]
The general public is rediscovering the scandal of illegitimate prices of medicines and health products via the example of Zolgensma. This gene therapy against spinal muscular atrophy is marketed by the Novartis laboratory at a price of two million euros per injection. Novartis has proposed a draw to select which babies will receive the treatment.
As if this lottery were not shocking enough, the scandal doesn’t end at this shameful strategy, which is only one demonstration of it; because Zolgensma was developed thanks to Telethon, money from tax-free donations, and public and charitable funds.
This example is far from unique. Although developed by public research in France, tools for monitoring viral hepatitis are now patented by private companies, which are the only ones to benefit from the sales profits. In the area of tuberculosis, Bedaquiline, a real breakthrough, was developed in large part thanks to public and charitable funding. For its part, Sanofi seeks to patent a combination of molecules, discovered several decades ago, and sell it at a premium price even though the initial usefulness of this combination was revealed thanks to funding from Unitaid, i.e., public money.
Sanofi receives a research tax credit of 150 million euros per year alone. This is twice as much, per year, as Agnès Buzyn’s announcement last June to hospital and emergency personnel on strike for months. And this is but a small part of the public aid it receives. However, since 2009, the laboratory has eliminated more than 2,800 research positions.
These examples, and so many others, are documented by NGOs, never by the state itself, which refuses transparency on the destination of public funding for research and development, and which accepts that we pay for drugs at least two times: first through its numerous direct and indirect financial support for research, and by the reimbursement for drugs for which pricing justification has not been evaluated.
A change was taking shape starting last May, under pressure from activists. It would have been necessary to fight for France to support a World Health Assembly resolution inviting countries to ensure transparency on the prices of medicines; it would have been necessary to fight, despite an obvious unwillingness on the part of the government, so that in November an added provision to the funding bill for the French Social Security System [equivalent to the British National Health Service] would obligate industrialists to provide details on public aid received in the development of a drug.
The measure would have permitted the public regulator to regain power in the negotiations by having a slightly clearer view of the reality of the expenses and risks taken by the industry to justify its exorbitant prices. But the Constitutional Council censured this provision, for reasons which seem to us unjustifiable and, first and foremost, politically motivated. Neither the government nor commissioner of the French Social Security System’s budget reacted to this censorship, proving by their indifference that transparency on the prices of drugs, at the heart of the Novartis scandal, is not their priority. The Minister of Health says she is simply « concerned » by the draw, and wants to be reassuring; in France, our system would prevent it. She therefore sees no problem with our solidarity system spending a fortune to pay for a drug that WE have already funded.
And since the government accepts this financial dictate from the pharmaceutical industry, it must finance it by taking the money from somewhere else. How? Through an austerity policy impacting hospitals, France’s Social Security health system, State Medical Aid, and social welfare programs. How dare it be claimed that there is not enough money for the staff and patients of the hospital to have decent conditions when one pays twice, and by the billions, for health products, while at the same time refusing to document the relevance of their price?
How dare it be claimed, as the minister does, that the lottery for childrens’ care is not relevant, when austerity measures have led hospitals in Ile-de-France to send certain newly born children out of the region for their paediatric follow-up? This raffle, whose identity is unclear, which concerns children as well as other patients struck by the consequences of austerity, has indeed been brought about by Agnes Buzyn’s policy and the government. That which Novartis offers with cynicism, the French government has determined to do.
As disgraceful as it is, Novartis’ announcement is not an aberration, but rather the product of a system encouraged by a lack of action on the part of our public authorities. It is the current system as a whole that must be fought and completely rethought. The media must finally document the extent of the problem and constantly question our political leaders on the subject. The government must ensure, by decree of law, the transparency on health products’ prices. It must reclaim OUR drugs, those for which we have already paid, including Zolgensma. Legal measures do exist, such as the compulsory license, making it possible to counter this pharmaceutical giants’ financial dictate and make health a shared asset again.
David Hacquin and Stéphane Besançon are, respectively, the president and the director of the NGO Santé Diabète [Diabetes Health]
Pauline Londeix and Jérôme Martin co-founded the Observatory on the Transparency in Medicine Policies