26 Aug 2011

On Tuesday of this week, Kathleen Sibelius, Secretary of the U.S. Department of Health and Human Services (HHS), announced the 12 non-federal members who will serve on the Advisory Council on Alzheimer’s Research, Care, and Services.

As stipulated by the National Alzheimer’s Project Act (NAPA), the Advisory Council will help shape the National Plan for Alzheimer’s Disease and Related Dementias. NAPA calls for the National Plan to coordinate and prioritize HHS and other federal efforts to ease the health and financial burdens associated with Alzheimer’s and related dementias. It is expected that research will be a major focus. The Advisory Council seats at least 22 members. Twelve are non-federal employees; the remainder include the Surgeon General, Regina Benjamin, and at least nine representatives of government agencies, including the Centers for Disease Control and Prevention, the National Institutes of Health, the National Science Foundation, and the Food and Drug Administration.

The 12 non-federal members include two researchers: Ronald Petersen, Mayo Clinic, Rochester, Minnesota; and Jennifer Manly, Columbia University, New York. Petersen, who will chair the Council, is best known for his clinical research into mild cognitive impairment. Manly studies the epidemiology and neuropsychology of AD. The other 10 non-federal members are patient advocates, caregivers, healthcare providers, and representatives from state health departments and voluntary health associations (see the full list at the HHS website). No scientists engaged in mechanistic or drug development/clinical trials research were selected for the Council, though some had been nominated.

The Advisory Council will meet quarterly to assess government programs that affect caregivers and patients with AD and related dementias. The Council will review and recommend changes to the National Plan, identifying areas of priority concern. Annually, the Council will monitor implementation of the plan. “We need to think beyond additional funding for basic science, as important as that is, and about what is required to enhance the performance and accountability of the research and drug discovery pipeline as a whole,” council member George Vradenburg told ARF via e-mail. “Examples might include outcomes-oriented research strategies; large-scale public-private clinical trials infrastructures; robust data disclosure practices; incentives for early high-risk investment in academic spinoffs and startups; challenge-based innovation; and innovative regulatory science.”

As chair of the Alzheimer’s advocacy network USAgainstAlzheimer’s. Vradenburg prevously had been instrumental in obtaining Department of Defense funding for Alzheimer’s disease research (see ARF related news story). Vradenburg’s group is a part of Leaders Engaged in Alzheimer’s Disease. LEAD is a coalition of organizations that lobby for legislation and research funding. Alzforum is collaborating with USAgainstAlzheimer’s by serving as a conduit to solicit recommendations from the AD research community, who are essential for understanding what causes AD and finding better treatments, yet arguably are underrepresented on the Council. USAgainstAlzheimer’s and LEAD have formulated a first questionnaire by which Alzforum readers can help articulate priorities to the Advisory Council. Your recommendations are welcome. Complete the questionnaire by Monday, 12 September 2011.—Tom Fagan.