Four associations in Sweden, Alzheimerfonden, Alzheimerguiden, Demensförbundet, and Hjärnfonden carried out a survey to "take the temperature" regarding people's thoughts on lecanemab for the treatment of early Alzheimer’s disease in their country, as well as more generally about how people with dementia and their relatives viewed taking part in drug treatment research or taking treatments despite side effects. They carried out this survey because they had so many call in connection with the news during the summer that the Committee for Medicinal Products for Human use (CHMP) of the European Medicines Agency (EMA) had given a negative opinion on lecanemab.
This survey was completed prior to the recent news that the CHMP at the EMA had re-evaluated its negative opinion on the treatment and has now given a positive opinion on lecanemab, on 14 November 2024. Alzheimer Europe's member association Demensförbundet, which was one of the four survey organisers, has shared some information about the survey and its results: The Swedish survey was a self-recruited web form, including both quantitative summaries and open-ended responses. It was open between 12 September and 2 October 2024 and the number of respondents totalled 295. When respondents were asked to consider the risk-benefit profile of the treatment, more than 8 out of 10 (85 percent) said they believed the treatment should be approved. Nearly as many (81 percent) said they would choose to undergo the treatment themselves if recommended by their doctor.
Some of the key themes from open-ended responses were:
• Greater autonomy: Patients and their families wanted more opportunities to make informed decisions about whether to undergo treatment for Alzheimer’s disease. Many wanted to choose for themselves whether to pursue a treatment, even with the potential risks of side effects.
• More time with better quality of life is worth the risk: Many were willing to take risks to slow the progression of the disease and gain more time with a better quality of life, even if the risks are known and the side effects potentially serious.
• Frustration over inequality: There was frustration among respondents over the EMA’s restrictive judgment in this case, compared to other markets and therapeutic areas. Many believed the system should be more flexible, especially for fatal diseases like Alzheimer’s.
• Support for research and development: Patients and their families emphasised the importance of continued research and the implementation of new treatments, which also form the foundation for future research. Many called for more opportunities to participate in clinical trials to help advance the development of future medications.
