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Alzheimer's Advocates Fight for Piece of Research Pie

Tom Williams/CQ Roll Call File Photo
Smith is putting together a bill that would seek to establish such a fund, which he hopes to bring forward in a few weeks.

For one thing, Vradenburg said, Congress has moved away from investing in specific diseases to a focus on boosting NIH funds overall. The effect, he said, is that the relative allocations today still echo disease priorities from before the turn of the century.

“Newer disease conditions that now affect more and more people, primarily Alzheimer’s but also diabetes, are simply not on the funding line,” Vradenburg said.

There’s also the nature of Alzheimer’s disease itself. Vradenburg said that those with dementia are unable to advocate for themselves and that the progression of the disease is slow compared to HIV and AIDS. Bens also pointed to the challenge of bringing Alzheimer’s patients and caregivers to Capitol Hill for advocacy efforts.

Failed drug trials and a lack of public outcry over the disease have played a role as well, Bens said. According to the Alzheimer’s Association, Alzheimer’s is the only one of the top 10 national causes of death without a way to cure it, prevent it or slow its progression.

“It’s been a little hopeless up until this point,” she said.

Still, Egge said he thinks the recognition made years ago that without action, HIV and AIDS would be an unsupportable burden on the country is now being echoed with Alzheimer’s. He also highlighted the role of those who fought to make HIV and AIDS research a priority, maintaining that the Alzheimer’s community is following suit.

That’s a constituency that can be expected to grow as the baby boomer population continues to age and a cure remains elusive.

“More people will suffer from this,” Smith said. “We need a Manhattan Project ... where the best minds set out to find a solution.”

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