In March 2019, pharmaceutical company Biogen announced the halt of its global phase-three trials testing the effectiveness of aducanumab in treating Alzheimer’s disease. The trials which had only lasted for a little over a year were stopped due to poor results.
Dr. Alois Alzheimer described the condition, for the first time, in 1906. Over 100 years since then, Alzheimer’s disease and some other types of cognitive decline remain without a cure but continue to affect more people each year. Part of the reason why no treatments exist is because of our limited understanding of such diseases. The brain is a complex organ and current research cannot pinpoint what exactly causes the disease. This makes it challenging to find treatments that can target the disease at its root.
However, part of the reason is also because of the stigma which surrounds Alzheimer’s disease. A 2018 TIMES article reported that “surveys consistently show that people of all ages are universally afraid of developing the condition, yet unlike with conditions such as cancer and heart disease, there is little public discussion around it.” The impact on individuals, their families and caregivers is not highlighted enough.
As a result, research and funding in this area are slow and unable to keep up with the rate at which people are receiving diagnoses. A study published by the National Institute on Aging (NIA) in the United States showed that deaths related to Alzheimer’s disease are nearly on par with cancer deaths. Yet, while cancer research receives $5.7 billion annually, Alzheimer’s disease only receives $550 million. This is after the adoption of a national plan to address the disease in 2012 which saw the funding double. Globally, for every 1 researcher in Alzheimer’s disease, there are 4 in cancer. These statistics are not to diminish the importance of cancer and cancer research but to highlight the need to fund Alzheimer’s research in the same capacity.
To understand the status of research and funding in Sweden, SCI spoke with Ms. Liselotte Jansson, Secretory-General of Alzheimerfonden (the Swedish Alzheimer Foundation). Ms. Jansson who is a serial entrepreneur and has a background in Finance and IT joined the foundation in 2011. Her primary inspiration to serve the non-profit sector was her mother who had a diagnosis for the disease.
Alzheimerfonden was established in 1988 and primarily focuses on raising money for grants to fund research in the area. In 2018 over SEK 30 million was distributed to Swedish research and selected healthcare development projects. Alzheimerfonden is the largest provider of Alzheimer’s research grants in Sweden.
Ms. Jansson says that despite the promising numbers, the gap between the supply and demand is big. “There are few resources and a lot that needs to be done. Public funding is limited. People can only contribute so much and there are many charities which are competing for the same pool of funds.”
She continues, “Alzheimerfonden is a certified 90 account. This means that the Swedish Collection Control has measures to ensure at least 75% of donations are dedicated to research grants and other welfare initiatives. But we are a small team and we ensure that we use the bare minimum of the funds received to run the organization. We use the available resources in the most efficient way possible and dedicate the majority to research and development.”
To encourage education and innovation in the area, Alzheimerfonden has adopted a two-pronged approach to health and wellness. Ms. Jansson explains, “For healthcare workers who wish to learn more about dementia and care, we fund up to half the cost of education for a Silvia certification. In 2012 we also founded The AlzeCure Foundation to research diagnosis and treatment for neurodegenerative diseases.”
Having the reputation of a welfare state makes it challenging for charitable organizations to appeal for public funding. Given the high taxes, the idea is that the state is responsible for taking care of its people. For organizations to then ask for financial support isn’t well-received. However, speaking from her experience and knowledge of the sector, Ms. Jamsson says that “there’s absolutely too little money in Sweden dedicated to Alzheimer’s research. The welfare only comes in once a person already has a diagnosis. But few structures are in place to ensure that the person isn’t affected by the symptoms to begin with. Without money, youth innovation, and translational research, there won’t be progress in targetting the disease at its root.”
She continues, “technology can play a huge role in the progress towards finding a cure. If would be very beneficial to have a huge database with entries and case studies of people who have received a diagnosis, their lifestyles, progression, and other details. We could aid researchers in creating a diagnostic tool that people can use in their everyday lives to analyze the risk and likelihood of being affected. [Currently, no such tools exist] Evidence-based research shows that by taking appropriate risk reduction measures, there is a possibility to reduce one’s chances of being affected.”
If a website or database could tell us that accurately and precisely, it would be a lot more effective. However, to achieve this vision, we need to end the stigma around the topic of dementia and fund concrete research in the area.”
Summing up, Ms. Jansson said, “We can do a lot more in this area. But for that, we need support not only from individuals but also from the government. Our politicians need to back the agenda and highlight it in public discourse.”
On September 21st, Alzhiemerfonden will observe World Alzheimer’s Day. This year Alzheimer’s Day will be held at the Clarion Hotel in Stockholm. There will be many inspiring lectures that cover everything from current research findings to personal stories and experiences. Anybody can join the discussion and we encourage everybody to be a part of the movement.