NAPA and the National Plan—Is Your Input Getting Through?

27 January 2012

The promise of the National Alzheimer’s Project Act(NAPA) unleashed a flurry of calls for researchers to weigh in on how the Department of Health and Human Services (HHS) should tackle the growing problem of Alzheimer’s disease. Leaders Engaged on Alzheimer’s Disease (LEAD), The Alzheimer’s Association, USAgainstAlzheimer’s, the Alzheimer’s Foundation of America (AFA), The Alliance for Aging Research...an alphabet soup of organizations has appealed to researchers to lobby for a variety of efforts. These range from enactment of the act to swaying the Advisory Council on Alzheimer’s Research, Care, and Services (see ARF related news story), to calls for budget increases. Most recently, researchers have been asked to submit ideas on the draft framework of the National Plan to Address Alzheimer’s Disease (see ARF related news story). In addition, people can share their thoughts directly through the HHS. With all this letter writing and commenting going on, readers might well wonder where best to spend their ink. Does one appeal carry more weight than another? Is anyone co-coordinating the effort to make researchers’ voices heard? And what happens to your opinion once you submit it?

It turns out that there is some organized coordination going on behind the scenes. As the acronym might imply, LEAD has taken on a primary role. “One reason LEAD was formed was to obtain a consensus among the major players in Alzheimer's advocacy, research, and care, and provide recommendations to the NAPA Advisory Council,” wrote Bruce Lamb, Cleveland Clinic, Ohio. A network of more than 40 different organizations, LEAD has four subcommittees overseeing different aspects of advocacy. The Research Workgroup, chaired by Tim Armour of the Cure Alzheimer’s Fund, recently launched an appeal for scientists to weigh in on the first of five goals outlined in the draft framework for the National Plan, that is, to prevent and effectively treat Alzheimer’s disease by 2025. Daniel Perry of Accelerate Cure/Treatments for AD (ACT-AD) and the Institute for Aging Research chairs the Drug Development committee. Howard Fillit of the Alzheimer’s Drug Discovery Foundation chairs the Clinical Care committee, and Gail Hunt of the National Association of Caregivers heads up the Long Term Care and Services committee.

With regard to the research aspect of the draft framework for the National Plan, LEAD and the Alzheimer’s Association are coordinating two main funnels of comment, George Vradenburg, CEO of USAgainstAlzheimer’s and co-convener of LEAD, told ARF. Vradenburg is one of 12 non-federal members on the Advisory Council on Alzheimer’s Research, Care, and Services (see ARF related news story). While the two efforts both target mainly researchers, they each have their own focus.

According to Vradenburg, the Alzheimer’s Association is working with a group of researchers to devise a budget for advances in AD research. “Their first rough draft, reported by Bill Thies at an Advisory Council meeting, is $2.3 billion,” said Vradenburg. Currently, the council is working to understand and refine this figure, essentially trying to define budgets needed in order to achieve the goals, said Vradenburg.

For its part, LEAD is looking at other, related issues in clinical care and long-term service. The LEAD Research Workgroup subcommittee complements the Alzheimer’s Association drive, but is not considering a budget. Instead, the LEAD drive focuses on action steps necessary to accelerate the research and the research pipeline, said Vradenburg.

Other advocates coordinate appeals with each other, as well. Sue Peschin, COO of the Alliance for Aging Research, told ARF that they almost always consult with other groups. In their recent drive to lobby for increased appropriations for research by way of a letter to Francis Collins of the NIH, the Alliance worked with Friends of the NIA, yet another group to which the Alliance for Aging Research, the Alzheimer’s Foundation for America, and USAgainstAlzheimer’s belong.

Researchers who have thoughts about how the National Plan’s research goals could be achieved can submit their ideas to Tim Armour of LEAD through Patrick Fritz of the consulting firm Booze, Allen and Hamilton. Fritz was hired to coordinate efforts on LEAD's behalf. Researchers can also write directly to the HHS to voice their concerns about the National Plan.

“I encourage all individuals to submit directly to HHS as well as through other appeals,” Lamb wrote to ARFthough he emphasized that the more consistent the message, the better chances are that the NAPA Advisory Council and HHS will include recommendations in the final plan. “I think the most impactful strategy would be to have LEAD Research Workgroup recommendations as well as individual comments that (hopefully) have common themes and messages,” wrote Lamb.—Tom Fagan