Our mission is to ensure affordable access to medicine for all. Learn more about us below.
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 to governments, stakeholders professionals and the general public. If that does not help, we achieve our objectives through the possible legal action around excessively high priced medicines. Our Articles of Association (in Dutch) can be found here.
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.
Annual Reports
Governance and Advisory Board
The governance of the Pharmaceutical Accountability Foundation consists of a Governance Board and an Expert Advisory Board. The Governance board is responsible for the policy and implementation of the Foundation’s activities. Both boards work on a 100% voluntary basis and make their knowledge, skills and experience available to the foundation entirely without interest.
Governance Board
Wilbert Bannenberg
ChairpersonWilbert is a physician and public health consultant, with over 35 years of experience in improving pharmaceutical systems in developing countries.
Sabina Voogd
Board MemberBusiness 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.
Expert Advisory Board
Hans Smits
TreasurerHans 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.
Tegan Insoll
SecretaryTegan 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).
Prof. Dr. Brigit Toebes
Chairperson of the Advisory BoardBrigit is Professor of Health Law in International Perspective, University of Groningen.
Tom Buis Msc
Advisory Board MemberAs a global health advocate at Wemos, Tom focuses on advocacy to strengthen health systems worldwide and to ensure that medicines are affordable.
Richard van Slobbe
Advisory Board MemberRichard is a Dutch registered public pharmacist specialist.
Ella Weggen
Advisory Board MemberAs a lawyer and senior global health advocate, Ella focuses on the realisation of equitable access to affordable medicines and other medical technologies worldwide.
Edwin de Voogd
Advisory Board MemberWith 35+ years of experience in the pharmaceutical industry, Edwin has also worked at the intersection of private sector and humanitarian organisations, and assists FtV in its mission for fair pricing. Edwin is also active as a freelance consultant, is responsible for the African Region at PUM and is on the board of Quamed.
Aart Hendriks
Advisory Board MemberAart is professor in health law at Leiden University, in the Netherlands.
Dr. Ellen ’t Hoen, LL.M.
Advisory Board MemberEllen is a lawyer and public health advocate, and the director of Medicines Law & Policy.
Dr. Jennifer Sellin
Advisory Board MemberJennifer is Assistant Professor of International and European law at the University of Maastricht.
Katrina Perehudoff
Advisory Board MemberKatrina is a health scientist and legal scholar with over a decade of experience in pharmaceutical policy, with a specialisation on access to medicines.
Anna Laskai
Advisory Board MemberAnna is a criminologist and assistant professor at the University of Utrecht. Her research interests lie within the field of white collar, corporate crime, and organizational criminology.
Andre den Exter
Advisory Board MemberAndre is a lecturer in health law at the Erasmus University Rotterdam. His research focuses on human rights and health care access, pharmaceutical law, health insurance law, European health law, and international treaty law and health care. He is also a founding member of the Erasmus Observatory on Health Law.
Mahboebeh Alipour
Advisory Board MemberMahboebeh is an attorney specialized in food and administrative law with a background in health and competition law.
Staff
Emily Dowdalls, MSc
Projectcoordinator (on leave until July 2022)Emily is a non-practicing pharmacist and a trained community organizer with experience in the climate movement. She has dedicated her time to (climate) justice in healthcare.
Rosalind Turkie, LLM
Human rights consultant/Acting project coordinatorRosalind is a human rights lawyer (LL.M.) with a background in languages. Her current focus is on promoting access to medicines through the right to health. She has also conducted research on using human rights to promote healthier and more sustainable food systems.
Partners & Resources
There are many organisations aside from Pharmaceutical Accountability Foundation doing important work and creating valuable resources to further the capacity of governments and others to ensure that all benefit from the universal right to health. Some we work closely with (our partners), and others are those we find to be valuable sources of reliable, expert information. Links to these organisations are below.
Partners
Resources
