If Glen Campbell forgets the words to “Wichita Lineman” during a concert he doesn’t worry about it – the audience just continues to sing along and provides the words. They are his support group. For the more than five million other Americans with Alzheimer’s disease, there is no such group. They have to rely on family, friends, and organizations such as the Alzheimer’s Association, VNA, CVAA, or paid support providers. But all Americans and other sufferers world-wide face a grim future. Of the six leading causes of death, Alzheimer’s is the only one for which there is no good treatment or cure. There are no Alzheimer’s “survivors.”
It was for this reason that six members of the Vermont Alzheimer’s Chapter were in Washington, D.C. for the annual Alzheimer’s Forum on April 22, 23, and 24. They joined nearly 1,000 other volunteers to learn about the progress being made in research and to make visits to our congressional offices on the Hill. Of this group 600 have declared themselves as an Ambassador for Alzheimer’s to a specific Senator or Representative to help maintain their awareness of the need for more money for research and the progress toward a cure. Ambassadors are Kelly Mazza for Senator Leahy, Jeanette Voss for Senator Sanders, and Daniel Bean for Representative Welch. Other attendees were Martha Richardson, Vermont Chapter Executive Director, Susanne Shapiro, Executive Director of Valley Cares, Inc., Townshend, and Nancy Bercaw of Burlington, author of the new book on Alzheimer’s “Brain in a Jar.”
During the office visits on April 24, members of the Vermont Alzheimer’s Chapter were pleased to be able to thank all of our representatives for their support of the search for a cure. All were supporters of the “HOPE for Alzheimer’s Act” during last congressional session and have either co-sponsored or are considering it for the bill this session. All are also members of the bipartisan Task Force on Alzheimer’s which works to develop support for bills and budgets. All three members also have expressed support for the addition of $100 million for Alzheimer’s research in President Obama’s 2014 budget.
During the forum Dr. Francis Collins, Director of the NIH in Bethesda, Md. informed the attendees that he was transferring $40 million from his discretionary fund to research on Alzheimer’s grants. All of this is encouraging. Money for research on Alzheimer’s has not been a high enough priority in Congress over the past years. In 1994 the NIH’s Alzheimer’s research budget was $125 million, this year it is $485 million – before the Sequestering Act decreases. This is small change when compared to the billions for research on cancer, HIV/AID, etc.
When meeting with the member’s health advisor staff members pointed out that for every $100 spent on research, Medicare/Medicaid was spending $29,000 for care. If we could delay the onset of Alzheimer’s by five years, we could cut the costs to Medicare and Medicaid in half. Alzheimer’s is the most expensive disease in America, greater than the cost of either cancer or heart disease. And this cost will expand exponentially as more baby boomers enter their late 60s.
Progress is being made, albeit very slowly. Our representatives are doing their best to support the search for a solution but they need our support in this quest. If you would like more information or wish to join the over 1,000 Vermonters on this local advocacy program visit www.alz.org/Vermont, or call 1 (802) 316-3829. Alzheimer’s, like all other diseases, can be beaten if people have the will and make the effort.