My father had dementia. His illness and death made me feel helpless, and left me with a lot of questions. In the two years since Dad died, I’ve been talking with Alzheimer’s researchers, looking for answers.
I’m especially interested in the research in my home state of Florida. An estimated 450,000 Floridians have Alzheimer’s disease, more than any other state except California. And because the population is older, we have a high prevalence of Alzheimer’s here in the Sunshine State. With the large number of Alzheimer’s cases here, what better place for research on prevention and treatment of the disease?
When I went to the grand opening of the new Byrd Alzheimer’s Center and Research Institute here in Tampa Bay a couple of weeks ago, I was pleased to hear about their plans to expand Alzheimer’s research in Florida. In addition to its own research projects, the Byrd Institute provides an infrastructure for collaboration among researchers statewide, as well as administrative services for Florida’s only federally funded Alzheimer’s Disease Research Center. Most of the work will be carried out in the new building, which has lab space, computers for patient databases, and a clinic for seeing patients. The Institute also has employees in Memory Disorder clinics around the state.
State Funding Cuts Threaten Progress
But as I toured the new facility, state budget cuts were announced. The latest proposal would cut funding for the Byrd Institute in half – from $15 million to $7.5 million. Yes, Florida has budget problems, and they’re likely to get worse. But the state’s budget will not drop fifty percent, like the proposed Byrd funding. Maybe this over-sized cut is due to politics and personalities. Or maybe it’s just that cutting funding for a start-up Alzheimer’s research institution is relatively painless. For obvious reasons, people with Alzheimer’s are not active lobbyists, and their families are too busy caring for them to take the time to advocate on their behalf.
Without adequate startup funding from the state, the Byrd Institute’s labs and clinics will sit empty. Private donors are unlikely to write checks to support a vacant building.
Ultimately, this lack of support is part of a larger problem: the disconnect between medical research and patients. Few Floridians know anything about the research going on in labs around the state, and many researchers do not interact with people who have the disease. More citizens affected by the disease should be key players in Alzheimer’s research at the Byrd Institute and other facilities.
Nationwide, there is a trend towards greater patient and consumer participation in research and health care. In some cases, patients and their families now have a say in how research is prioritized, funded and managed. With donations of time and money, they also support that research.
For scientists to find ways to prevent and treat Alzheimer’s, we need this kind of two-way relationship between research facilities and the community. But it takes time to establish this kind of cooperation. Maintaining startup funding levels for the Byrd Institute will give Alzheimer’s patients all over the state increased opportunities to work with researchers, participate in clinical trials and receive treatments based on the latest science. This should increase Floridians’ direct support of Alzheimer’s research, and over time, lessen the Institute’s reliance on state funding. More than 17 million people live in Florida. If each of them eventually donated just one dollar per year, there would be no need for the state to allocate startup funding.
What You Can Do
If you live in Florida, please call, write or email your legislators and let them know you oppose funding cuts for the Byrd Institute. Give the Institute time to recruit researchers and doctors and work with the community before startup funding is cut off. If $15 million dollars sounds like a lot of money, consider the $155 million the state allocated last year to bring the Burnham Institute for Medical Research to Orlando, or the $310 million of state funds spent to create Scripps Florida.
Then find the Alzheimer’s research facility nearest you, and ask for a schedule of events. Learn more about the work they’re doing, and make sure you meet their scientists. Contribute what you can. Chances are their work will benefit someone you love.