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Advocacy and Community Activism: Today’s Cure to Alzheimer’s

Alzheimer’s disease is currently the 6th leading cause of death in the United States. It is the only top 10 killer that has no treatment, no cure, nor a way to slow down its progression. Pharmaceutical companies and research groups are struggling to develop treatments that make it past the last stages of clinical trials, clinical research participants are lacking in number, and physicians are struggling to detect the disease in its early stages.


Alzheimer’s disease, the silent killer. I credit the disease this nickname because millions of families and individuals are fighting face-to-face with Alzheimer’s, yet no one openly talks about it. As the nation impatiently waits for scientists to announce a treatment or cure, there is something that can be done by the community. Though we are currently not in control of who the disease affects, we have control over community activism, advocacy, and raising awareness. By advocating and rallying in support of families, caregivers, and individuals with Alzheimer’s, the community can push for changes that bring us closer to a cure.


What is Alzheimer’s?


Alzheimer’s Disease is a progressive, neurodegenerative disease that attacks the brain’s cells, resulting in changes in behavior, decline in cognition and, eventually, death. The most widely accepted theory for Alzheimer’s revolves around the formation of protein plaques and tangles that are deemed to be the cause of this horrendous disease as the build-up of these proteins lead to brain cell death. Consequently, many biopharma companies and academic research labs are working to find treatments and, hopefully a cure, by tackling these biological discrepancies.

In 2011, in response to rising mortality rates from Alzheimer’s Disease , the National Institute of Health (NIH) initiated the National Alzheimer’s Project Act. This initiative aims to expand Alzheimer’s research funding, support for families, and progress tracking efforts with the ultimate goal of finding a cure by 2025. However, the question remains: are the right steps being taken to stay on track for this ambitious goal?


Biological Complexity of Alzheimer’s Disease


Alzheimer’s Disease was discovered in 1906, just over a century ago, yet, not much is known about the disease. Though scientists have an idea of how to biologically tackle the disease, the numerous genes that are associated with Alzheimer’s, the different biological pathways, the inability to catch the disease in its earliest stages, and many more enigmas of this complex disease have been preventing the ability to find a cure. Consequently, the medical field struggles to develop therapeutics and pharmacological drugs that prove effective in even slowing down the disease. However, there is hope as there is a rise in Alzheimer’s research and an expansion of different approaches in slowing down the disease’s progression.


In 2020 alone, there were 121 pharmaceutical therapies in clinical trials for Alzheimer’s, 29 of which were in Phase 3 trials, 65 in Phase 2 trials, and 27 in Phase 1 trials. The majority of these pharmaceutical agents are involved in disease modification. Though the most accepted theory of Alzheimer’s disease formation revolves around protein plaques and tangles, there is an increase of scientists taking a different approach in targeting this disease through other biological pathways. In this review, Dr. Jeffrey L. Cummings, Founding Director of Cleveland Clinic Lou Ruvo Center for Brain Health, outlines the drug pipeline and also emphasizes the emergence of different, innovative mechanistic approaches in targeting Alzheimer’s. This may be promising steps being taken to accelerate the discovery of an Alzheimer’s cure, however, none of these drugs have been accepted by the FDA.


Aducanumab, a pharmacological therapy by Biogen Inc., has made the most progress out of the many Alzheimer's drugs in development, reaching the reviewal stage of FDA approval. This drug is claimed to slow the progression of Alzheimer’s disease and presented positive results in its clinical trials. Though its review was prioritized and accelerated, the drug was ultimately denied acceptance by the FDA. Without a doubt, this shows the biological complexity of Alzheimer’s and the high demand and urgency of research tackling this disease. It is probable that the innovative therapies targeting new pathways may be the answer to developing a therapy for Alzheimer’s disease, but only research can prove this point.


Policy Changes


To accelerate the discovery and development of an Alzheimer’s cure and treatment, there is a need to push policies that support research and enhance care for Alzheimer’s patients and their family caregivers. Though the ultimate goal is to find a cure, it is important to address the care aspect of this disease.


As the nation’s scientists urgently look for a cure, the nation also needs to actively develop ways to support families affected by this disease. The prevalence of Alzheimer’s is at 5.8 million and is projected to increase to 13.8 million by 2050 in the United States alone. With this rapid increase of individuals with the disease comes dire economic implications: approximately $244 billion worth of care is provided by family caregivers and other unpaid caregivers. Additionally, the cost trajectory of this disease is expected to bankrupt the United States’ Healthcare System by 2050 as care costs can reach $1.1 trillion. Therefore, not only is this disease an emotional, physical and mental strain on individuals and families, it has the potential to pose a lasting financial strain on the United States, thus impacting the quality of care that the nation can provide for its residents.


In acknowledgement of these challenges, non-profit UsAgainstAlzheimer’s has also proposed a Cure by 2025 plan in supporting and accelerating research. Not only is the organization involved in research, but they also created and actively advocate for the CHANGE Act, which aims to improve early detection and access to care in collaboration with Medi-Cal and Medicaid. Organizations such as LEAD Coalition also lead efforts to push federal policies to support Alzheimer’s families and improve access to care. In addition, there has been a rise in youth involvement in the movement against Alzheimer’s. Youth-led non-profit The Youth Movement Against Alzheimer’s (YMAA) leads a grassroots movement to find a cure by incentivizing youth involvement through volunteering, fundraising, and policy making.


There are more and more individuals recognizing the urgency of Alzheimer’s Disease and quickly finding ways to address this public health issue through advocacy. The power of science is unreal, yet the importance of political advocacy and awareness is unmatched.


Citations and Acknowledgements


Cummings, J., Lee, G., Ritter, A., Sabbagh, M., & Zhong, K. (2020, July 16). Alzheimer's disease drug development pipeline: 2020. Retrieved January 26, 2021, from https://alz-journals.onlinelibrary.wiley.com/doi/10.1002/trc2.12050


Global Leaders in Dementia Meet to Stop Alzheimer's by 2025. (n.d.). Retrieved January 26, 2021, from https://www.usagainstalzheimers.org/press/global-leaders-dementia-meet-stop-alzheimers-2025


NIA and the National Plan to Address Alzheimer's Disease. https://www.nia.nih.gov/about/nia-and-national-plan-address-alzheimers-disease


The Change Act of 2019. UsAgainstAlzheimers.

https://www.usagainstalzheimers.org/sites/default/files/2019-06/summary_CHANGE_04-19_0.pdf


UsAgainstAlzheimer’s: https://www.usagainstalzheimers.org/


The Youth Movement Against Alzheimer’s: theyouthmovement.org


LEAD Coalition: http://www.leadcoalition.org/