Title: Advocating for the Future Generation
Subject: Meryl Comer
In Alzheimer's we have no survivors, and the natural advocates are the caregivers, but we’re by the bedside just trying to get through the day and too tired to protest. I couldn’t have people come in to help me, friends come by, because he was too difficult. So, you become isolated with the patient as the disease progresses and part of the advocacy is really to step out of the shadows and begin to talk about the disease and that’s how I became an advocate.
I like to say that advocacy saved my life. It helps you find your voice, find a community that shares your passion in the fight for a cure. It empowers you to face the daily burden of care with a purpose to make it better for the next family, for the next generation. I have spoken out in public testimony, both the Senate, before the FDA. Science deserves to rule on safety and efficacy of new therapies. But there's an arbitrary value to what time is worth when a disease has no cure. And I think many advocates want it to stop. The patients and families that we advocate for, they don't have years to wait. They must today, before it’s too late, have the chance to determine with their doctors whether any new disease-modifying treatment might be right for them and worth the risk.
We also all learned a lesson in the pandemic. We watched Operation Warp Speed and the expedited creation and adoption of vaccines that demonstrated the ability of the life sciences and healthcare industries to function more rapidly when faced with a public health crisis. Well, Alzheimer's disease is a public health crisis, and it has magnified the question many ask when handed a diagnosis, why is it taking so long to get a drug developed? I don’t know anyone in our space who isn’t interested in helping clinical trials move faster. So, the bottom line is, depending on the urgency of the issue, people are willing to take greater risks for a chance for a longer life and the Alzheimer's community is that patient population.
We all live in the hopes of becoming a memory and I think that’s what upsets me most about Alzheimer's. It interrupts the generations. It robs our children and grandchildren of the stories that we had to tell or the insights we might’ve shared. And that to me is one of the great heartbreaks of Alzheimer's disease.
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