Focusing on the Alzheimer’s time bomb

Focusing on the Alzheimer’s time bomb

Sen. Bill Cassidy (R-La.) had seen the projections on Medicare costs for people with Alzheimer’s disease, and he didn’t like what he saw. 

Pressing officials from the National Institutes of Health at a hearing Thursday, Cassidy asked if it was time to shift research funding away from HIV. 

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“We’ve got this balloon note on Alzheimer’s, $200 billion and climbing,” he said. “Are we going to wait until we figure out a vaccine for [HIV] before we begin shifting to the new battle?”

Robert Egge, chief public policy officer at the Alzheimer’s Association, saw the proceedings as another sign that the cause is gaining traction. 

He is leading the charge in Congress to boost funding for Alzheimer’s research, which advocates argue is necessary to prevent Medicare from being crushed by costs related to the disease. 

“There’s an increasing recognition that this is something we have to urgently deal with,” Egge said in an interview with The Hill. 

A report from the association released in February projects that as the population ages, Medicare and Medicaid costs linked to people with Alzheimer’s will more than double by 2030 and almost quintuple by 2050, from $153 billion in 2015.

Without a treatment, the report projects, spending on people with Alzheimer’s will eat up 31 percent of the Medicare budget by 2050, up from 18 percent this year.

And there is currently no treatment for Alzheimer’s, a fatal disease that affects the brain and can lead to memory loss and the inability to perform tasks or speak.

Egge and the association have been trying to figure out how to get this message to the public. 

One way is through shock. 

The association’s ads in the D.C. Metrorail subway system show a gravestone marked “Medicare,” arguing that Alzheimer’s costs could bankrupt the program they are not addressed. 

“To the extent that we can use techniques like that to sort of dramatize the reality and make it clear, we think it’s really important for us to do that, because we haven’t had the kind of focus we need in past years,” Egge said. “We’re getting there now, but we have much further to go.”

Egge got his start working on Alzheimer’s indirectly. He was working for a commission on long-term care in the mid-2000s, an effort led by former Speaker Newt Gingrich (R-Ga.) and former Sen. Bob Kerrey (D-Neb.). 

The group kept coming back to the effect of Alzheimer’s. 

So the bipartisan pair started an Alzheimer’s commission in 2007, with Egge serving as executive director. In 2009, he moved to the association.  

“I had had, like many Americans, a family experience with Alzheimer’s, and it affected me personally in that way, but I never anticipated that this would be my professional focus until we looked at this issue from that broader perspective and realized how important it was to America, and this is something that we just have to deal with urgently,” Egge said. 

Gingrich’s involvement, and his push for more research on Alzheimer’s even in his 2012 presidential campaign, is a mark of the bipartisan nature of the cause. 

The former Speaker pointed to Alzheimer’s last month in a New York Times op-ed calling for doubling  the budget for the National Institutes of Health.

Government, Gingrich wrote, is “ultimately on the hook for the costs of illness. It’s irresponsible and shortsighted, not prudent, to let financing for basic research dwindle.”

In the entire work of the Gingrich-Kerrey commission, “there wasn’t one fault line on partisan grounds,” Egge said. 

“That’s extremely encouraging,” he said. “There’s a lot of things the parties will disagree on across a broad range of issues. Alzheimer’s has never been one of them.”

Researchers said in March that a drug being developed by the pharmaceutical company Biogen showed a promising ability to slow cognitive decline from Alzheimer’s, though trials were at an early stage.

“The Biogen results do look very encouraging to us,” Egge said. “We’re very excited about them.”

But he cautioned that previous drugs had raised hopes only to disappoint in the third phase of clinical trials, when a drug is given to a large group of people to confirm its effectiveness.

When not in the world of possible new treatments or pushing for more funding, Egge says, “I wonder where the time goes.” 

He has four children at home in Falls Church, Va. The drive into his office in downtown D.C. provides something of a respite: He can dig into his audiobook subscription.

“I have a Kindle that has 30 unfinished books on it,” he adds. 

As for the treatment he and so many others are waiting for, he says not to expect just one breakthrough. 

“It’s never been the case of just one silver bullet that solves the problem,” he said. A solution, he adds, might be to combine pre-emptive treatments — the equivalent of statins to fight heart disease — with treatments tailored to subgroups that are affected differently by the disease. 

Congress passed language in its December spending bill requiring the National Institutes of Health to submit a budget request for Alzheimer’s research based on what is required to fund the necessary science, a move that could lead to increased funding. An extra $25 million in that bill brings Alzheimer’s research funding to about $600 million, though the association hopes to ramp it up to $2 billion eventually.

Still, the goal might not be one knockout punch. 

“We’re probably not going to have that cure. That’s a very rare thing,” Egge said. “You almost name the disease and you don’t find that.”

But even just a delay in the disease’s damage can save money . 

“Even the ability to delay the onset of Alzheimer’s by five years could have profound impacts financially and in terms of the everyday lives of millions of Americans,” he said.