Reflections on advocacy

Treatment: How we got here and where we’re going

Disease modifying treatments for Alzheimer’s mark a fundamental change for individuals and families. These treatments are providing people with more time to live their lives to the fullest and plan for their future. This new era has brought much hope. At the same time, treatments have also marked a significant shift for research and health care fields. Even if the impact of treatments is limited to those in the early stages and, currently, is available in only a few countries, this is a moment to celebrate. It’s also a moment to reflect back, and to learn from as we work to deliver these and the next generation of treatments to more people.

So, how did we reach this moment? 

The approvals of the first disease modifying treatments in the United States, and in other high-income nations, is a result of years of advocacy, collaborative science and government action. 

Funding in science is what has helped drive the progress we have made. Behind that funding of science is advocacy. 

In the U.S., the 2011 enactment of the National Alzheimer’s Project (NAPA) Act ushered in a new era, changing the way our nation addresses Alzheimer’s and all other dementia. This landmark law led the way for additional policy victories, including the first National Plan to Address Alzheimer’s Disease. A year later, the U.S. enacted the Alzheimer’s Accountability Act, which ensured that Congress hears directly from National Institute of Health (NIH) scientists on the resources needed to achieve the goals of the National Plan. Today, annual federal funding is more than $3.8 billion. During the same time, private funding has also increased, fueling research progress at every stage — from identifying bold ideas to raising and investing dollars in high impact projects with the potential to change the field.

Prior to NAPA, the U.S. did not have a comprehensive plan to address Alzheimer’s, but since then the U.S. government — thanks to the advocacy efforts of organizations such as the Alzheimer’s Association and USAgainstAlzheimer’s — has taken dramatic action, passing vital, unprecedented federal research funding increases, implementing a crucial public health infrastructure and improving access to quality care. 

A similar story can be told in many other countries, where advocacy has drawn attention to the urgency of the cause. This has driven greater investment, and that global effort has gotten us to this point. 

Disease-modifying treatments have been approved by regulators in the U.S., Europe, the UK, Japan, and a number of other countries, with applications for approval elsewhere. But regulatory approval has not always been followed by payer approval, meaning even where regulators have said treatments are safe and beneficial, the patients early in the disease trajectory are not benefiting.

The availability of disease-modifying treatments brings with it the challenge of access and equity. While approvals represent progress, ensuring that all patients who need these treatments can access them remains a significant hurdle. At the same time, this development shines a spotlight on the critical issue of timely diagnosis. As with many other diseases, diagnosing Alzheimer’s early can make a profound difference in treatment efficacy and quality of life. However, public policy challenges remain in navigating early diagnosis, securing access to treatment, and effectively managing patients through healthcare systems.

Beyond these practical challenges, there is also a strategic challenge in how we talk about dementia. For decades, advocacy efforts have focused on care and support, but the introduction of treatment medicalizes the disease in new ways. How we communicate about dementia, how societies perceive it, and how we frame the public narrative will all evolve. The role of advocacy coalitions is critical in driving this change, ensuring that the conversation remains patient-centered and inclusive.

The WDC is hosting a global dialogue on 27 February to bring together leaders to share thinking and begin to develop recommendations for this next era of advocacy, treatment and government action. 

Dr Joanne Pike, President and CEO of Alzheimer's Association and George Vradenburg, chair Davos Alzheimer's Collaborative