By Dr. James Brewer
An estimated 4.7 million Americans aged 65 and older have Alzheimer’s disease, and this number is projected to climb to 13.8 million by 2050. As astounding as these numbers are, the earliest phases of the illness are not captured and are believed to be even more prevalent. With so many in our community afflicted with Alzheimer’s disease or caring for someone with dementia, the aggregate suffering is unfathomable.
What can be done to halt this societal scourge? The enormity of the challenge will require an “all-hands-on-deck” approach, spanning well beyond the scientists investigating the underlying molecular pathology and therapeutic targets, well beyond the entrepreneurs and chemical engineers seeking to design the next breakthrough drug, and well beyond the most innovative, risky, and disruptive ideas.
The endeavor will need to engage society into a volunteerism far broader than it has been, and to be complete, it must extend across the diversity of our community.
In this most human of diseases, the most critical piece to solving Alzheimer’s will be a broader engagement of volunteer participants in Alzheimer’s research. These heroes enable clinical research through the sacrifice of time and comfort to participate in rigorously conducted clinical trials and research studies.
You may recall public engagement in both cancer and AIDS, movements that ultimately resulted in AIDS and cancer patients living longer lives. The early clinical trial participants were the brave men and women who
began the process that dramatically reduced AIDS and cancer-related deaths.
Today, we are in sight of a new age of discovery in brain-related research and Alzheimer’s disease. We are gaining understanding about the underlying genetics and molecular pathways of the disease. Our hope and conviction are that this new knowledge will give us what we need to develop innovative and effective treatments for Alzheimer’s.
A major obstacle remains – we need efficient recruitment of volunteer research subjects. Often, we can’t find enough qualified people to volunteer, particularly in trials with extended time involvement, lumbar puncture, or commitment to brain autopsy at death, but it’s even true in simpler trials.
Advancing research will rely on altruistic and, for some of our studies, brave volunteers, so how does one motivate people to step forward and participate in today’s more involved and extensive Alzheimer’s disease clinical research?
We want to engage the 10,000 Baby Boomers and people well into their 70s and 80s – even 90s – that they can help and convince them of the tremendous value they can bring to this fight.
Without human studies, there will be no treatment and prevention. Without treatment and prevention, we can expect Alzheimer’s to bankrupt the U.S. health system along with an unbearable number of families.
The Alzheimer’s Disease Cooperative Study at UC San Diego coordinates clinical trials around the country. Early phase clinical trials are of importance as they help us diversify the pipeline of what might eventually become the cure. A trial taking place at six clinical sites right now, called Discover, is testing a new drug, Posiphen. Posiphen works differently than the drugs tested so far and the new approach by which this drug fights the disease is very exciting.
In Discover, we are asking patients with memory loss, known as mild cognitive impairment, or early Alzheimer’s disease to stay a short time in the hospital for multiple tests, including a type of lumbar puncture that allows continuous sampling of spinal fluid. Spinal fluid mirrors what is going on in the brain and we can measure changes in production of APP/Abeta, tau/phospho-tau and alpha-synuclein, the important proteins implicated in Alzheimer’s and Parkinson’s disease.
The study asks a lot of its volunteers, but we feel the fight against Alzheimer’s requires innovative, bold techniques, always with great attention given to patient safety, including rigorous Institutional Review Board monitoring.
I am convinced of this: Volunteers in trials should be viewed as heroes for a vital cause – Regardless of whether the study of their participation produces the cure, these volunteers should be credited with the eventual cure. This disease will be cured through knowledge gained incrementally, and it is almost assured that the first person cured will be a clinical trial participant. What a wonderful day that will be.
For more information on Alzheimer’s clinical trials, visit www.adcs.org
Dr. James Brewer is Director of the Shiley-Marcos Alzheimer’s Disease Research Center and Chair of the Department of Neurosciences at UC San Diego.