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Web letter by Jana Powell: Alzheimer’s research underfunding must be restored

It was an honor to return to Washington, D.C., for the recent 25th Alzheimer’s Association Advocacy Forum. This year the forum was attended by more than 900 people from across the U.S. In two days of meetings we were provided updates regarding the progress being made to someday celebrate the success of treating, preventing and curing this illness.

The speakers were many; and the messages were those of the obstacles impeding the path to success and the hope associated with the latest efforts in reaching the goals of the National Alzheimer’s Plan released one year ago. Francis Collins, director of the National Institutes of Health, was one of the speakers. He, as well as other scientists, is optimistic that the research being done now may lead to a breakthrough in the near future. However, that optimism is tempered with a long-standing problem of an inexcusable lack of funding.

While investments made in research funding for cancers, heart disease and HIV/AIDS have proven effective in reducing deaths in all of those major illnesses, there has been a paucity of funding for Alzheimer’s. It is now the sixth-leading cause of death in the U.S., and there has been a 68 percent increase in deaths from 2000 to 2010. At the same time, spending for care-giving related to Alzheimer’s is rising. The 2013 projected Medicare and Medicaid spending for those with Alzheimer’s exceeds $140 billion, but the 2013 budget for research funding was only $484 million. That amount was decreased in the sequestration, which reduced NIH funding across the board. Collins reported he was able to allocate $40 million from the director’s discretionary fund to help supplement research funding for Alzheimer’s.

When we visited Capitol Hill, our message to Sen. Joe Donnelly, who met with us personally, Sen. Dan Coats’ legislative correspondent and Rep. Marlin Stutzman’s legislative assistant was to reverse this underfunding in the 2014 fiscal year budget and support the additional $80 million for NIH Alzheimer’s research funding that is in the president’s budget proposal. An additional $20 million is also in the budget to support education of health care providers and caregivers.

We asked each of our congressmen to write a letter to the Appropriation Committee chair and ranking member, seeking approval of the budget request. The numbers of those affected by Alzheimer’s will be growing in the next 35 years from the current 5 million Americans to 16 million by 2050. The costs will also be increasing to a predicted total of nearly $900 billion in Medicare and Medicaid costs by 2050.

If these numbers are alarming to you, I ask you to contact the offices of our senators and representatives and add your voice to the other advocates who have spoken. Funding research now is imperative to reduce the number of people affected and to decreased health care costs. For additional information on how you can advocate for change, visit or call 800-272-3900.