Pharmaceutical Accountability Foundation

We believe medicines must be priced fairly

Access to medicines is a fundamental human right. But high drug prices can be a serious obstacle to ensuring that right is met. We take on pharmaceutical companies who set unreasonably high prices for medicines and medical technologies, holding them to account for abusing their market position.

Our Mission: Access to medicines

The Pharmaceutical Accountability Foundation serves the public interest by striving to ensure access to medicine. Medicines and medical technologies are made available in a socially responsible and sustainable manner. We attach a value to fair pricing and distribution in accordance with European and international legal standards, and therefore take action to combat unjustifiable price gouging by companies abusing market monopolies. We seek to achieve our objectives through the provision of advice and information and legal proceedings. Our Articles of Association (in Dutch) can be found here [pdf].

Our History

The Pharmaceutical Accountability Foundation was created in July 2018 in response to unethical gaming of the pharmaceutical incentive system that betrays the public trust, harms patients and prevents access to medicines. Our first case was the complaint against pharmaceutical company Leadiant in September 2018. This company was granted exclusive rights to market an old medicine called CDCA as a treatment for a rare metabolic illness, cerebrotendinous xanthomatosis (CTX), and promptly increased its price 500-fold. CDCA had been on the market since 1976 as a gallstone treatment, and had since 1999 been prescribed off label to treat CTX at a cost of € 0.28 per capsule or € 308 per treatment-year in the Netherlands. After Leadiant obtained exclusive marketing rights, it increased CDCA’s price to € 140 per capsule or € 153,300 per treatment-year, imposing a crippling new price on CTX patients. The company had also bought and removed less expensive versions of this medicine from the EU market, so that CTX sufferers would be completely dependent on their over-priced version. Unfortunately, this kind of behaviour is not isolated. Pharmaceutical companies are increasingly taking advantage of regulations intended to incentivise the creation of new, needed medicines in the public interest to instead ratchet up prices to levels that keep those medicines out of reach. And often this is done without any new innovation at all – as was the case with CDCA, a medicine which had been in use to treat CTX for two decades before Leadiant’s price hike. The Pharmaceutical Accountability Foundation has been taking action against Leadiant – and will take action against other companies that similarly abuse their exclusivity rights.

Our Governance and Advisory Boards

The Foundation consists of a Governance Board as well as an Expert Advisory Board.

Governance Board

Wilbert Bannenberg

Chairperson

Wilbert is a physician and public health consultant, with over 35 years of experience in improving pharmaceutical systems in developing countries.

Eline Visser

Treasurer

Eline is a financial specialist with over 15 years experience in financial control and budgeting, including as a former small business owner.

Katrina Perehudoff

Secretary

Katrina is a health scientist and legal scholar with over a decade of experience in pharmaceutical policy, with a specialisation on access to medicines.

Expert Advisory Board

Prof. Dr. Brigit Toebes

Chairperson of the Advisory Board

Brigit is Professor of Health Law in International Perspective, University of Groningen.

Prof. Dr. Huub Schellekens

Advisory Board Member

Huub is a Professor of Pharmaceutical Sciences at Utrecht University.

Tom Buis Msc

Advisory Board Member

Global health advocate at Wemos.

Dr. Ellen ’t Hoen, LL.M.

Advisory Board Member

Ellen is a lawyer and public health advocate, and the director of Medicines Law & Policy.

Dr. Jennifer Sellin

Advisory Board Member

Jennifer is Assistant Professor of International and European law at the University of Maastricht.