Posted 15 March 2004
Interviewed by Gabrielle Strobel
In 2002, Sheldon Goldberg assumed the top job at the (Alzheimer's Association) after 30 years in national associations and long-term care management (See bio [.pdf]). Prior to becoming president and CEO of the association, Goldberg led the Jewish Home and Hospital of New York. While overseeing an internal realignment of the Alzheimer's Association's field offices throughout the country, Goldberg also prepared the organization for a broad-based public awareness and lobbying campaign.
This initiative was launched last month with a press conference at the New York Public Library and full-page advertisements in national and congressional newspapers. On the heels of this initial publicity wave, the association will announce a "Coalition of Hope" at its upcoming public policy forum in Washington this March 20-23. The purpose? Nothing less than making Alzheimer's a memory. The way there? Energize baby boomers to press for more federal research funding.
ARF: In your view, just how large a problem is Alzheimer's disease?
SG: It is a huge national and international problem. There's the emotional side of what it does to families and individuals, there is what it does to our health care delivery system and to long-term care. With the gift of longevity, we are seeing a tremendous growth in the amount of Alzheimer's. And our largest generation is coming along in age. We are seeing the disease's impact today, but we ain't seen nothing yet because of what is going to happen if we don't interrupt, stop, cure it. Much of my career has been in long-term care at the national and international level, so I have seen the impact of this disease even without the added problem of the baby boomers' aging looming above our heads.
ARF: From your work in elder care, what impressions have you taken away that prepared you for your current job? What memories guide you today?
SG: My whole career has been in long-term care. At the state level, I was involved in policy; at the federal level, I headed a national association for over 16 years that dealt with federal policy, care, and issues regarding nursing homes, assisted living, retirement communities. Then for four and a half years, I headed one of the largest providers in the country. The work was about frailty, certainly, but an overwhelming part of it was about confusion, loss, dementia, even if we did not call it Alzheimer's at the time. So I saw firsthand the impact this disease has on the health care delivery system, long-term care system, and most importantly, families and individuals. I've seen what it does to the caring spouse or the family members. It's devastating.
ARF: Will it surpass the burden of heart disease?
SG: I don't want to speculate in economic terms. But keep in mind that Alzheimer's incapacitates totally. It overwhelms the long-term care delivery system in this country.
ARF: The Alzheimer's Association has embarked on a major publicity campaign. What's its main thrust?
SG: There are several main thrusts and they are of equal importance. Right off the bat is that we are committed to creating a world without Alzheimer's. That means increasing the funding for research. This includes two broad areas. One is increasing federal government funding. From the government this year, we see budgets coming forward that are woefully inadequate. The second is our own commitment. We are the second-largest funder of Alzheimer's research in the world, second only to the federal government. We intend to raise more funds to support the research efforts and the great scientists out there ourselves. We're extraordinarily committed to those things.
Number two, there is a tremendous lack of awareness in the community, specifically in the baby boomers and those older, about this disease. There's a tremendous amount of denial, too. Therefore, we want to provide as much information about this disease as possible and urge people who are concerned about it to seek help. There are things that can help in the course of this disease, both for the afflicted and the family member.
The third part of this campaign is about prevention. We are not at the point where we know things that can prevent Alzheimer's, but we strongly suspect that adopting a healthy lifestyle will increase a person's ability to withstand these diseases. I'm speaking about staying active and engaged intellectually in your community. Things that are good for your heart probably are good for your brain, as well. So we are asking people to adopt an active, vigorous involvement in life and a healthy lifestyle. We are not convinced that anyone has conveyed that, especially when it comes to brain health, to the American public.
This campaign is not a battle; it is a war, and I use this word because this is not a one-shot deal. It is going to continue for years until we resolve this disease. One initiative we include in here is the creation of what we call the Coalition of Hope. We are involving hundreds of diverse local, state, and national organizations throughout this country and the world in this coalition to raise their awareness of this disease, and to get them urgently involved in increasing research funding.
ARF: Researchers will be pleased to hear this. Is the Coalition of Hope still in the conceptual stages?
SG: No. We have enrolled organizations representing tens of millions of people, and it is expanding. There will be an opportunity to use that Coalition in a powerful way to urge our elected leaders to support research for Alzheimer's disease. Secondly, organizations that join our coalition will create a sense of awareness among their constituencies.
ARF:Other voices, for example, Bill Haseltine, who is the CEO of Human Genome Sciences, are saying that AD research has reached a point where it deserves a huge public investment in the league of what HIV and breast cancer are getting, which puts it in the billions. That would require congressional action. What is the association doing in that regard?
SG: We've always had a billion-dollar goal. We need dramatically more funds to conduct the basic science and clinical trials. The funds available are a pittance compared to what is needed, given the scope of this problem. Therefore you're going to hear from us in the loudest way possible in fighting for research.
ARF: Scientists are concerned about the upcoming NIH budget. They worry that once funds earmarked for homeland security and other issues are subtracted, the Alzheimer's budget may come out to a net loss. Will the association be able to buffer some of that loss?
SG: We can't. At the same time, no one is going to be a louder spokesperson for research at the federal level than we are. We're going to support the National Institute on Aging and the National Institute of Health to get appropriate funding.
ARF: The Alzheimer's Association is the biggest private funder for Alzheimer's research. What is the research budget this year, and the projection for next year?
SG: In 2003, our funding of scientific research reached a record $16 million. We are hoping this year to get close to $20 million. Since its founding 23 years ago, the Alzheimer's Association has awarded research grants of $150 million. It's difficult to come up with the funds—you know that. It's hard work, but we are very committed. We want to walk the walk.
ARF: Is that how you'll measure the success of your outreach campaign?
SG: Our outreach campaign has multiple facets for measuring success. You're on to the first of them. Part of it will be increased federal funding. Part of it will be our own increased funding for research. Part of it will be public awareness of this disease; that's more difficult to measure but there are ways of doing it. Finally, part of it is helping people understand that we have almost 300 points of service across this country where people can get assistance; so helping people find these points of service is also part of how we measure success.
ARF:The association has re-branded itself with a new logo. The old one depicted two people, one supporting the other; the new one shows two connected open circles, like a face and a beaker, perhaps. What does it mean?
SG: It reflects our dual purpose of serving people and support for science. We call it "People and Science."
ARF: How many grant proposals does the Alzheimer's Association receive, and how many does it fund, roughly?
SG: In 2003 we received 619 applications and funded 78; we hope to fund 80 to 90 in 2004.
ARF: How does the Alzheimer's Association distribute funds among caregiving, public policy, education, research funding, fundraising, and administrative costs?
SG: Forty-three percent of our total expenditures go toward education and support services; this includes 20.3 percent for education, 9.3 percent for patient and family services, 9.2 to fund our chapters, and 4 percent for public policy. Thirty-four percent of the total budget funds research, and 23 percent covers fundraising and administrative costs.
ARF: In 1998, before you became president, the Alzheimer's Association revised its grant review process. Now it's structured more like that of the NIA, with online peer review and invited proposals around themes. Are you pleased with how it's running, or are you planning to change it?
SG: I'm pleased with how it's running. We make the best effort to have unbiased peer review and to identify the most worthy grants. Scientists across this world support this effort with diligence and integrity. I am extremely proud of our Medical and Scientific Advisory Council (MSAC), who oversee the peer review and grants process. They are committed leaders in the field and work hard for us. They have instituted a two-tier process whereby grants are first reviewed by a customized group of three to six volunteer "peer" scientists who are drawn from a database of several thousand experts across the various areas of AD research. Then the MSAC reviews these evaluations and fine-tunes the grant portfolio to ensure that it balances established areas of research with important emerging directions. MSAC members do not themselves review grants, and they recuse themselves from discussing proposals from their institution to avoid conflicts of interest.
We try very hard to keep administrative costs down. Reviewing 600 grant applications could be enormously costly but we have worked to make it all electronic; it requires paper only after the grants have been awarded. Our overwhelming goal within the whole organization from our Board to our staff is to increase the amount of funding for research.
ARF: The national campaign—why now? Is it that the research has progressed or the size of the problem is becoming overwhelming, or the association is now ready to take it on?
SG: All of the above. The problem is enormous, the need for research funding has never been more acute, and the progress made is enormous, and now is not the time to stop. We want to continue the commitment of the federal government in a difficult economy and we need to continue our own commitment to funding research. We also know that many people are not getting health care early enough in this disease, and so there's a tremendous need for public awareness that, to be very candid, I wish the organization… The organization has in its own way been trying to do this for 25 years. This is a continuation of that longtime effort, but it's much louder. It is now shouting versus whispering.
ARF: We hear you.
SG: The goals haven't changed; we're just turning up the volume.
ARF: The association has conducted a survey about public perceptions on Alzheimer's disease. What struck you the most about its results? (See survey in .pdf format.)
SG:The pessimism. There's still a prevailing pessimism that this is natural aging. There's pessimism about the ability of science to find a treatment or cure, something to interrupt this disease process. Plus, people are not aware even about available treatments. All that makes it clear to us that the time is right now to educate the American public, the world public, and to gain their support.
ARF: Twenty years ago, people would have been right in that assessment, but not anymore.
SG: Yes, we want people to know about the scientific progress that's been made.
ARF: How are you going to reach people besides the press conference you've held, the newspaper ads…?
SG: Through a multitude of vehicles. We are advertising multiple times in USA Today, the New York Times, the Wall Street Journal, the Los Angeles Times, the Chicago Tribune, the Washington Post, Roll Call, the National Journal of the Hill, the Congressional Quarterly—you notice the last four are focused in Washington. It's going to be on radio, too, and broaden as we move forward. The Coalition of Hope will be a large part of this, as well, when we've finished building it. It will help communicate information to people and ask them for their assistance in helping us get research funds. We are very much aware of how other organizations have achieved financial support for their cause. They have created a movement, and our goal is to create a movement in understanding.
ARF: Top-flight fundraising is a sophisticated field…
SG:The greatest fundraising in the world cannot replace the role of the federal government in funding research. We're talking about a movement. It is "top-flight moving the will of the American public" to support a cause that is very, very important to so many people across this country.
But our goal is not just the federal government. As a complement, we have tried to develop scientists by being an early funder of their work, and to do this where federal funds don't go.
ARF: So it's a multi-pronged movement. I think because they care for their parents, baby boomers already are anxious about what's in store for them. After all, they are known as the generation who wants it all, including a long life with a healthy mind.
SG: Baby boomers and those 60+ are the populations we are going to target. Not only do they experience it with their parents and their loved ones, but they also have to be conscious of their own retirement and how their lives will be led.
ARF: So you foresee a broad-based public awareness like that we've developed over decades for heart disease. What to do to avoid a heart attack has really been the foremost health issue in people's minds.
ARF: American Heart Association logos are on cereal boxes. Will we see the Alzheimer's Association's new logo on food packaging and crossword puzzles?
SG: Are we going to consider cause-related marketing to raise funds for research? Absolutely. Are we going to use cause-related marketing to create public awareness? Absolutely. Our story is one of supporting science to find a cure for this disease, and we'll tell it in every way possible. We will raise money ourselves in whatever ethical, honest, high-integrity way we can, we will lobby the government to do what's necessary, we will get our message to people. So that's a yes, yes, and a yes!
ARF: Would you like to leave our audience with a closing statement?
SG: We want scientists to know that we're fighting along with their cause. We're fighting to get funding for them; we're fighting to get people to the care and services they need. We are fighting for a world without Alzheimer's, and it's only going to happen because of research.
SG: Thank you. Great talking to you.
ARF: The pleasure was mine.