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].
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.
Wilbert is a physician and public health consultant, with over 35 years of experience in improving pharmaceutical systems in developing countries.
Hans has been working on board level in the automotive industries for over 30 years. Now that he has retired, he is dedicating his time to a healthier world.
Sabina VoogdBoard Member
Business Owner 3 Star Lobby: Coaching and Training on Lobby. Until May 2021: Lobbying for fair access to Covid-19 vaccines and C-TAP for Wemos.
Tegan is a human rights lawyer (LL.M.) with a focus on global health and children's rights. She is a Project Researcher for Protect Children (Suojellaan Lapsia).
Expert Advisory Board
Prof. Dr. Brigit ToebesChairperson of the Advisory Board
Brigit is Professor of Health Law in International Perspective, University of Groningen.
Prof. Dr. Huub SchellekensAdvisory Board Member
Huub is a Professor of Pharmaceutical Sciences at Utrecht University.
Tom Buis MscAdvisory Board Member
Global health advocate at Wemos.
Richard van SlobbeAdvisory Board Member
Advisory Board Member
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 SellinAdvisory Board Member
Jennifer is Assistant Professor of International and European law at the University of Maastricht.
Katrina PerehudoffAdvisory Board Member
Katrina is a health scientist and legal scholar with over a decade of experience in pharmaceutical policy, with a specialisation on access to medicines.