Tens of thousands of Americans are calling on the government to correct "dramatically underfunded research" for Alzheimer's disease and to improve diagnostic tools and treatments, according to a report released Monday by the Alzheimer's Association.
"There really needs to be a transformational change to how we approach the disease," says Harry Johns, president of the Alzheimer's Association.
The association hosted 132 public sessions in 42 states and the District of Columbia, plus three national sessions over the summer to gather public opinion for the formation of the National Alzheimer's Project Act, signed into law by President Obama last January. The first draft of NAPA will be completed by the end of the year, according to Don Moulds, deputy assistant secretary for planning and evaluation for Health and Human Services.
Johns is hopeful new public faces for Alzheimer's will raise the national focus on the disease and eliminate the stigma associated with it. Both Tennessee women's basketball coach Pat Summitt and singer Glen Campbell announced this year they have Alzheimer's and are continuing to work. Campbell is being saluted at Wednesday's Country Music Association Awards.
"We haven't really had anyone go public with Alzheimer's since Ronald Reagan, and when he announced it, we didn't see much of him anymore," says Johns. "After Betty Ford told the world she had breast cancer, it made a big difference in how the disease was treated. I think Pat and Glen will help immensely."
According to the report, the sentiment expressed at the meetings was that an Alzheimer's diagnosis is even worse than a malignant cancer diagnosis, since an Alzheimer's patient has no hope of beating the disease.
"By making Alzheimer's a national priority, the United States has the potential to create the same success that has been demonstrated in the fights against other major diseases. Federal leadership has helped lower the number of deaths from conditions such as HIV/AIDS, cancer and heart disease," the report's authors write.
Alzheimer's is the sixth-leading cause of death in the USA. It is the only cause among the top 10 without a way to prevent, cure or slow its progression of robbing the brain of memory.
In 2011, the government will spend about $502.5 million on research for Alzheimer's and related dementias. About $450 million of that will come from the National Institutes on Aging budget. NIA's director, Richard Hodes, says Alzheimer's "is the disease on which the NIA spends the most."
Some diseases have separate agencies within NIH. The National Cancer Institute will spend about $6 billion in 2011 on cancer, with additional funding allocated for breast, brain and lung cancers.
Nearly 70% of U.S. respondents said the government should increase spending for Alzheimer's research, according to a recent Harvard School of Public Health survey.
"I can't speculate on that (possibility)," says Moulds. "Funding is obviously an important question. It is part of the secretary's decision making as she works out 2012 and 2013 budgets.''
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