Dear Friends,

Sitting in the Central Jury Room at 100 Center Street, fulfilling my civic duty and looking at the 150 others in the room, some reading, some knitting, some working on their laptops, I wonder how many are touched by dementia or will be in the near future if we don’t find a way of stopping this tidal wave in its tracks.

Recently, I attended the National Alzheimer’s Association Public Policy Forum in Washington, D.C. The news from the Forum was both distressing and heartening. Distressing, because conditions are right for the “perfect storm”—aging baby boomers living longer and no drugs to prevent the disease, stop the progression or a cure for the disease at this time. With up to 5.1 million Americans affected, The National Institute on Aging (NIA) has steadily decreased research funding, which peaked in 2003 at $658 million. 2007 funding is $643 million—a major decline, without factoring in inflation.

In the Senate Hearing, where Senator Barbara Mikulski (D- Maryland) introduced the Alzheimer’s Breakthrough Act of 2007, Richard Egge, Director of the Alzheimer’s Disease Project at the Center for Health Transformation at the NIA talked about the two main goals in research and made a stunning analogy to Hurricane Katrina.

“...in less than 25 years Medicare will be spending almost $400 billion...”

“We have two fundamental objectives with respect to Alzheimer’s. One objective, is to find therapies that will derail this disease. The second objective is to support those coping with Alzheimer’s devastating impact. The first is to deliver a decisive medical solution. The second is to help reduce the pain and exhaustion, however inadequately, until medical advances make AD caregiving no longer necessary. Both are essential goals and one might reasonably assume that the federal government is putting roughly comparable resources behind each of them. In fact, however, the imbalance in investment is startling. For every dollar the government spends through Medicare and Medicaid to help Americans cope with Alzheimer’s impact, it invests less than a penny to find a cure through the work of the National Institutes of Health and the Food & Drug Administration. This penny-on-thedollar approach might be called America’s Katrina strategy for Alzheimer’s disease. As we now know, policymakers long neglected funding the work required to repair and strengthen the levees that might have saved New Orleans from the worst of Katrina’s impact. And so, after the hurricane, a hundred-fold more had to be spent to rebuild the devastated city after the levees failed.

So long as the government’s current, reactive posture continues, we are repeating the tragic misjudgment of Katrina every 72 seconds as another American braces against their personal hurricane with no levees to shield them. Far from sensationalizing the present situation, in one very significant regard this Katrina analogy understates the deficiency of our current federal approach toward AD. For, however slowly, the fact remains that New Orleans is now being rebuilt. That city is recovering from the mistake of neglecting its levees. But until effective therapies are in hand,we simply have no way to even begin to restore the lives of those now gripped by Alzheimer’s.”

In that same hearing, Sam Gandy,M.D.,PhD., Director, Farber Institute for Neurosciences, Thomas Jefferson University, Philadelphia, PA, and Chair, Medical and Scientific Advisory Council, Alzheimer’s Association, spoke passionately about another serious consequence of diminished funding; draining the “brain trust.”

“The slowdown in funding is already having an impact in the Alzheimer research community. NIA is funding less than 18% of the most highly rated investigator-initiated projects it receives—down from a 30% success rate in 2003. This means that most scientific opportunities are left on the table, and the successful ones are being seriously under-funded. It also means that some of the most promising clinical trials—the way to translate basic research findings into effective treatments—will be delayed or scrapped altogether. And I can say with certainty that we are losing a generation of scientists.… These brilliant minds are our greatest resource, and we should be applying them to our most difficult problems.

Only money will bring them back.

These budget cuts are not just killing research projects. They are killing the minds of millions of Americans. And they are killing your chances of getting health care spending under control. If we let the disease continue on its current trajectory, in less than 25 years Medicare will be spending almost $400 billion on 10% of its beneficiaries— those with Alzheimer’s. That is almost as much as we are spending in the entire Medicare program today. Medicaid will be spending another $50 billion on people with Alzheimer’s disease.

We can cut that spending in half—saving over $200 billion annually— with treatments to delay the onset of Alzheimer’s and slow its progression. And we can also save millions of families from devastation. By 2030, there would be 1 million fewer cases of Alzheimer’s in the United States than there are today—in spite of the rapid aging of the baby boomers. And among those of us who would still get it, most would never progress beyond the mild stages of the disease and could continue to live productively with our families in the community.”

The heartening news is that there are nine drugs in the pipeline that appear to hold some promise and some of them might be diseasemodifying, rather than the modestly effective symptomatic treatments currently available.

However, the challenges of coping with dementia and its devastating effects are there for the over 200,000 New Yorkers and their families who are living with this disease every day. Many family members tell me that they wish they had known about the supportive services of the NYC Chapter earlier in their caregiving experience. Many struggled in isolation, having trouble finding accurate, helpful information.

So, if you are sitting in a jury room, or in a house of worship, or at a business lunch, and find out that someone is coping with AD in their family, please make sure they know about the NYC Chapter. Give them our 24-hour Helpline number,
800-272-3900, and our Web site, www.alznyc.org. Encourage them to attend an “Understanding Dementia” meeting, or to call one of our care consultants for more individual help and guidance. We know dementia, and we are here to help.

— Jed Levine
Executive Vice President,
Director of Programs & Services

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