April 23, 2013
Alzheimer's Association Advocacy Forum keynote speaker Dr. Francis Collins, director of the National Institutes of Health (NIH), provided attendees at Tuesday's General Session with a dose of good news for Alzheimer's research during a time when optimism about financial resources may be in short supply.
Collins announced — in what he termed a unique step — that he has designated $40 million from his fiscal year 2013 director's budget for Alzheimer's research by scientists who recently submitted applications at the request of the National Institute on Aging.
In addition, Collins pointed out that President Barack Obama's FY14 budget would add $80 million for Alzheimer's research "over and above what's being supported for any other condition, again reflecting the way this administration prioritizes this disease."
"I so wish it could be more," he said. "But I hope you hear in this kind of a commitment the way in which we at NIH see this as an opportunity and a responsibility. We also hope that moving forward we can put medical research back on the stable track that is needed in order to support the research and the researchers."
Despite the budget uncertainty, Collins spelled out a number of current developments related to Alzheimer's research. These include the recently announced Brain Research through Advancing Innovative Neurotechnologies (BRAIN) mapping project; the Alzheimer's Disease Neuroimaging Initiative (ADNI); the discovery of 10 new genetic variants; animal models, such as a new rat model featuring both plaques and tangles; more than a dozen Alzheimer's clinical trials under way; and the repurposing of drugs not originally meant to treat the disease.
"The sense that we have in the research community of accelerated momentum in Alzheimer's research is palpable," Collins said. "It would be fair to say that 8 to 10 years ago, people were feeling a little frustrated, a little discouraged — it seemed as if progress was really slow. Now, researchers in this field are energized because of a variety of new things that have come along, many of them in just the last couple of years, that give us a sense that we're finally beginning to get a real handle on what causes this disease and what to do about it."
Collins closed his remarks by conveying the sense of hope that he and the NIH feel about the future of Alzheimer's research.
"I'm reminded of a quote that I'm fond of because it applies to medical research," he said. "It's from Peter Levi: ‘Hope in every sphere of life is a privilege that attaches to action. No action, no hope.' We at NIH, we're all about action. The Alzheimer's Association is about action; that's why you're here. Together, I believe we can do great things."
Barrick Wilson, of Wichita, Kan., saw his wife diagnosed with Alzheimer's in 2008 at age 64 and took early retirement to serve as her caregiver before placing her in a care facility this year. He was pleased to hear Collins talk about the potential of, and progress in, Alzheimer's research.
"I'm very enthusiastic about it," he said. "I took away a good, positive message that things are headed in the right direction."
Bill McInturff, co-founder and partner, Public Opinion Strategies, worked with the Alzheimer's Association to develop messages that resonate not only with Congress but also the public. He spoke about using personal connections to Alzheimer's and the impact the disease to drive support of the cause.
When speaking to legislators about Alzheimer's, "Establish an emotional connection by explaining the human cost on the (person with Alzheimer's) and the family," he said. "The messages need to educate people about the prevalence of this debilitating disease that has no treatment or cure."
McInturff added that while emotional messages work because it helps personalize the issue, there has to be a cost attached to the messages in order to sway legislators who deal with numerous appeals. One statistic he cited said, "In the last 30 minutes, Alzheimer's has cost the United States over $11 million, and 26 more people have developed the disease."
"As one (Hill staffer) said to us in a focus group, ‘I was having lunch, and during that lunch 26 people heard really bad news,'" he said. "This is a powerful way to remind people of the cost of inaction."
A lead sponsor of the original Health Outcomes, Planning, and Education (HOPE) for Alzheimer's Act and who Alzheimer's Association President and CEO Harry Johns introduced as "a true champion" of the cause, Sen. Debbie Stabenow (D-Mich.) spoke with passion about her dedication to fighting Alzheimer's and her admiration for advocates on the frontlines.
"This is a powerful, powerful movement, and it wouldn't be happening without all of you," she said. "We are so fortunate to have so many advocates. We are in a fight not just to make sure that people who are diagnosed and their caregivers have support today — which is absolutely critical — this is about finding a cure. This is about hope for the future."
Convincing her fellow legislators to increase, not slash, money for Alzheimer's research is crucial — ‘We should not be talking about cutting research funding, it makes absolutely no sense," Stabenow said — but it's not the only message lawmakers need to hear. Stabenow wants advocates to encourage sponsorship of the HOPE for Alzheimer's Act.
"Ask every single senator you meet with, as well as House members, why they're not a co-sponsor if they're not," she said. "We need 100 percent sponsorship of that bill…If they say they support it, the next question is, ‘Will you be a co-sponsor?' That's how you show support."
Stabenow echoed the sentiment that advocates sharing personal stories can help sway senators and representatives to show that support.
"The time to win, the time to act, is now," she said. "Keep spreading your message. Keep sharing your stories. There is nothing more powerful than your personal story. Step by step, we will find a cure. I'm very proud to be working with you along the way."
During the lunch program, Stuart Rothenberg, a nonpartisan reporter and columnist, shared his views on the current political landscape and how it affects asking legislators to back a cause.
"It's like a football game — two yards and a cloud of dust," he said. "The way things are in this town, it's difficult to even get two yards. Money's tight, folks are angry, members (of Congress) are defensive, and there are a lot of groups coming to town who want to do good and who deserve support. All you can do is make your case in as personal, effective way as possible."
Among other issues, Rothenberg discussed a "right direction, wrong track" poll in which respondents are asked, "Is the country headed in the right direction or off on the wrong track?" The question doesn't address specific policy matters. The most recent results: 31 percent right direction, 61 percent wrong track. He suggested advocates could use such numbers to their advantage.
"When you go up to the Hill, you're going to find members who understand there is dissatisfaction," he said. "Members are sensitive to opinion. You can have a very personal impact."
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