Alzheimer's is one of the top six causes of death in the United States, but it's the only one that has no prevention, cure, or way to slow the disease, according to Harry Johns, CEO and president of the Alzheimer's Association. New research suggests 500,000 people die with it every year.
"There is really nothing else like it in terms of its impact that has so little done about it at the federal level," Johns said. "There is a clear correlation between making those investments and seeing those mortality rates go down."
Much of the forum—run the same week as the Alzheimer's Association International Conference—circled back to the need for federal investment in research and the role public pressure plays in achieving that.
Years ago, cancer wasn't much discussed. But "once it was important for the public, things changed ... When research funding changed, cancer changed," Johns said.
Private donors and not-for-profits can help provide some monetary support, but to actually succeed, federal funds are imperative, speakers said.
"It takes all three sectors to make it work," Johns said, which is why the Alzheimer's Association dedicated huge efforts to sparking a national discussion about the disease.
"Raising public awareness is absolutely critical to getting the kind of support that we need," Collins said. And in recent years, more public figures have stepped up to speak out—which is starting to pay off.
Attitudes are changing, Collins said. No longer are symptoms attributed to someone simply going "senile."
Recently, the Senate Labor, Health, and Human Services Appropriations Subcommittee approved a 60% increase—the largest ever—in Alzheimer's disease research funding, and the House subcommittee approved a more than 50% increase. As part of a $2 billion year-over-year funding increase for the National Institutes of Health, the National Institute on Aging would receive $350 million for such research.
But more must be done, the speakers said, and the public must push the government to do it.
Sen. Dick Durbin (D-Illinois) urged audience members to share the way Alzheimer's affected their families with Congressional representatives and staffers.
"There is a dollar sign at the end of this too, but before you reach the dollar sign there is a very human element," he said. "Never stop telling the stories."