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Alzheimer’s Advocates Fight for Piece of Research Pie

Advocates for the roughly 5 million Americans with Alzheimer’s and their families had something to cheer when the recent fiscal 2014 spending bill was signed into law. The measure included hard-fought funding to help address the disease at a level that the Alzheimer’s Association called unprecedented.

In the grand scheme of things, however, advocates acknowledge that those funds are only a modest step toward their goal of finding a cure. The top barrier to developing treatments is the level of investment, they say, and they plan to continue to push for additional money.

Some are also lining up behind the idea of establishing a global fund for Alzheimer’s modeled after international efforts to address HIV and AIDS, tuberculosis and malaria. Rep. Christopher H. Smith is putting together a bill that would seek to establish such a fund, which he hopes to bring forward in a few weeks.

“If there’s a cure out there, that kind of global urgency and interest and scrutiny of all things that lead to Alzheimer’s will make a difference,” the New Jersey Republican said.

The lack of a cure — or even a way to stop its progression — has made Alzheimer’s the sixth leading cause of death in the nation, according to figures from the Alzheimer’s Association. One in 9 Americans age 65 and older has the brain disease, the group said, while the ratio jumps to 1 in 3 for those 85 and older.

Alzheimer’s “slowly destroys memory and thinking skills and, eventually even the ability to carry out the simplest tasks of daily living,” in the words of the National Institute on Aging. The agency, which is part of the National Institutes of Health, said the disease is the most common cause of dementia among the elderly; symptoms typically first emerge after age 60.

The $1.1 trillion omnibus spending bill (PL 113-76) included $1.2 billion for the National Institute on Aging, which Senate appropriations aides said is a $131 million increase over actual fiscal 2013 spending. In the explanatory statement accompanying the bill, appropriators said they expect a “significant portion” of the boost to go toward research on Alzheimer’s, leaving the specific amount to the agency to avoid what they described as politicizing the peer review system.

The bill also included funding to support caregivers of those with Alzheimer’s, training for health professionals and outreach activities.

“This is a significant, much-needed investment in Alzheimer’s research,” said Robert Egge, the Alzheimer’s Association’s vice president of public policy. “We were pushing very hard for the increase.”

George Vradenburg, chairman and co-founder of USAgainstAlzheimer’s, said the lawmakers’ move is a signal that they recognize the problem.

But he also called the funding level inadequate and said he would be pushing for an increase in the fiscal 2015 budget that lines up with a Senate resolution (S Res 303) sponsored by Maine Republican Susan Collins. The resolution calls for doubling U.S. spending on Alzheimer’s research in fiscal 2015, which Vradenburg said would bring spending to $1 billion, and setting a path over the following four years to get to $2 billion a year.

Cynthia Bens, vice president of public policy at the Alliance for Aging Research, said the direct U.S. costs of caring for individuals with Alzheimer’s and other dementias illustrate the urgency of the situation. According to the Alzheimer’s Association, those costs were estimated to be $203 billion in 2013, including $142 billion in Medicare and Medicaid costs.

“It’s one of those diseases that, you know, we can’t care to ignore anymore,” Bens said. Her group is one of the leaders of a coalition called Friends of the National Institute on Aging that asked for a $300 million increase over fiscal 2012 levels for Alzheimer’s and aging research in fiscal 2014.

Under the current fiscal constraints, some laudable research projects are falling off the table, an NIH leader said. At a House Foreign Affairs subcommittee hearing last month held by Smith, he asked National Institute on Aging Director Richard J. Hodes if Congress and other countries are appropriating sufficient money for Alzheimer’s research.

Hodes said the scientific opportunities “far exceed” his agency’s ability to fund all meritorious ideas. The current success rate for applications is about 15 percent, he noted, but nearly 30 percent are seen as meritorious.

Vradenburg and Smith view a global fund as a way to achieve the scale of change necessary to take on Alzheimer’s and dementia. Both use the term Alzheimer’s to represent all forms of dementia.

“The idea of a global fund for Alzheimer’s disease would, I believe, almost exponentially move the mitigation and someday eradication of Alzheimer’s disease,” said Smith, who is co-chairman of the Congressional Task Force on Alzheimer’s Disease.

The problem, after all, is a global one. Alzheimer’s Disease International estimated 44 million people worldwide were living with dementia in 2013, and that number is expected to jump to 135 million in 2050.

Vradenburg said the idea came up at the G-8 summit on dementia in December, where the British announced they would appoint a global dementia envoy whose role would include exploring the development of a global fund.

While he thinks the concept received a positive reception at the congressional hearing, Vradenburg also said he thinks the fund is “a ways away.” And he acknowledged that competition from advocates for other diseases is inevitable.

“I am confident that the shifting of that much resource will produce a number of arguments from others who think that they are entitled to a global fund or others who think that they ought to be the recipient of investments from the global fund,” he said.

Smith said he sees parallels between the international momentum that led to the Global Fund to Fight AIDS, Tuberculosis and Malaria and the movement around Alzheimer’s. But advocates also acknowledge that Alzheimer’s faces some unique challenges as it competes for medical research dollars.

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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