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Medicines play an important role in healthcare. They can increase survival rates, reduce symptoms and improve quality of life. But new medicines are often expensive, and it is not always clear how effective they are and for whom. How justified are high prices? How much of taxpayers' money and health insurance premiums should go to new drugs, and how much to other care? To find out what citizens think about this, researchers at Radboudumc organized the Citizens' Forum on Expensive Drugs over two weekends. On Sunday, November 3, the final day of the forum took place at the Soesterberg.
Lively discussions during meetings
In the citizens' forum, 24 participants with different backgrounds and beliefs spoke out about socially acceptable prices and spending on expensive medicines. Several cases were discussed during the meetings, including the treatment of a rare disease, a form of cancer and a common chronic condition. For each case, participants were given explanations about the disease, its severity, possible treatments and the price of medication, among other things. They also had the opportunity to question experts in the field of expensive medications. Each of the discussions addressed the question of whether the price of the drug is acceptable, and what considerations are important.
Professor of health evidence at Radboudumc, Rob Baltussen, is project leader of the citizens' forum. He looks back on the two weekends of the citizen's forum with satisfaction and is pleased with the discussions that took place: “I noticed that the participants were quickly able to have a good discussion, apparently this is a topic that concerns citizens and in which it is fairly easy to form a picture of whether or not they think a price is reasonable and what their considerations are in this regard.”
Criticism of high asking prices for minor customizations
In doing so, citizens often noted that drugs can be of great benefit to sick people and those around them, but at the same time there is much uncertainty: how well do the drugs work, in whom do they work, and how long do the effects last and what does it mean for the patient in life. They also wondered with several drugs whether the price is justified given the development costs incurred by the manufacturer. They were especially critical when it came to drugs that were not entirely new but where high prices are still being asked, even if it is only a minor modification, a different indication or a different form of administration.
Debbie (age 37) is a participant in the citizens' forum. The following strikes her: “I always knew that some drugs are expensive but in this citizen forum I found out that some cost as much as a million euros or more, and why that is. It bothers me that so much profit is made on things that people care about so much. We really need to do something about that.”
Results to be sent to minister
On the last day of the forum, participants compiled a list of their main considerations regarding drug pricing. They also worked on a manifesto summarizing the main conclusions of the forum. These results, together with additional research, will be used by MAUG to advise the Minister of Health on a new framework for socially acceptable drug prices and expenditures. This advice is expected to follow in the summer of 2025.
Citizen's forum is initiative of government parties
The citizen forum is an initiative of program 'Maatschappelijk Aanvaardbare Uitgaven Geneesmiddelen' (MAUG) and is conducted by Radboudumc in collaboration with research firm Motivaction, which is responsible for recruiting the participants and moderating the discussions during the weekends. MAUG is a collaborative program of the Consumer & Market Authority, the Dutch Healthcare Authority, Zorginstituut Nederland with support from the Ministry of Health, Welfare and Sport.
More about Radboudumc's role in the Citizen's Forum can be found here (in Dutch).
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