In an attempt to understand the scope of Alzheimer disease (AD) research and clinical care for the growing number of people with the disorder, the federal government signed into law the National Alzheimer's Project Act (NAPA) earlier this year and has now announced the dozen non-federal members who will attempt to determine the state of AD affairs.
The Advisory Council on Alzheimer's Council on Alzheimer's Research, Care, and Services non-federal working group will be chaired by Ronald C. Petersen, MD, PhD, the Cadieux Director of the Mayo Alzheimer's Disease Research Center and the Mayo Clinic Study of Aging in Rochester, MN. Ten federal members have also been appointed to the council.
Health and Human Services (HHS) Secretary Kathleen Sebelius is charged with overseeing NAPA. The first public advisory council meeting will be held Sept. 27 when scientists, health care experts, patients, and family members will have an opportunity to address their concerns about AD research and care.
The committee is charged with pulling together an inventory of all federal, statewide, and local activities around research and care for AD and related dementias to determine any gaps and develop a national agenda to address present and future needs. Separate subcommittees will focus on research, clinical long-term care, and support.
A SHOT-ON GOAL
Dr. Petersen said it was premature to describe a more specific agenda as there is a lot to do and the group has not yet come together. But he described the group's interests — using a hockey sports analogy — as being vested in a “shot-on goal.” Just as a hockey coach puts his team in a position to win by encouraging his players to bombard the goal with good shots, the committee will increase the initiative's chances for success by exploring multiple promising approaches to AD.
AD experts estimate that approximately $183 billion is spent on care for AD compared with about a half-billion dollars on research, Dr. Petersen said. If the group can change that trajectory — increasing the money for research to gain more resources and knowledge that gets at the solutions to this disease — there is a greater likelihood for reducing the incidence of AD as well as the financial burden of the disease, he said.
“It's a huge challenge,” said Dr. Petersen, whose work in understanding the earliest clinical signs of mild cognitive impairment (MCI) has shaped a new way of diagnosing the disease. “A lot of cards are on the table,” said Dr. Petersen. “Our initial task is to do an inventory of what the federal government is doing to address Alzheimer's. We are going to look at the entire landscape and figure out what is needed to develop new treatments and address the multiple needs of patients and their caretakers. We will develop recommendations based on our analysis.”
Dr. Petersen noted that NAPA does not have money to fix these problems but an aerial view could shape future allocations of federal funds. “It's not the best fiscal time but these are the cards we are dealt. Congress will need to address funding needs,” he said.
The neurologist said that when he received a call from HHS Secretary Sebelius asking whether he wanted to chair the committee, he did not pause to think about the answer.
Dr. Petersen is one of two AD scientists on the council; Jennifer Manly, PhD, an associate professor in the Cognitive Neuroscience Division of the Columbia University Taub Institute for Research on Alzheimer's Disease, is the other. Other members include clinicians, individuals from advocacy groups, health care workers, and caregivers. [“See “Advisory Council Members.”]
The Advisory Council will meet quarterly to help officials at the HHS, Veterans Affairs, Department of Defense, and the National Science Foundation address the development of a national plan. The council members will serve a four-year term.
Colleagues in the field are not surprised that Dr. Petersen was appointed to chair the non-federal members of the Advisory Council.
“Ron Petersen is an outstanding choice,” said Richard J. Hodes, MD, director of the National Institute on Aging (NIA) in a telephone interview with Neurology Today. “He is at the forefront of clinical and translational research and understands the human aspects of this disease.” He said that Dr. Petersen is also on NIA's National Advisory Council.
Dr. Hodes said that the NIA has already begun to collect information on the full spectrum of AD supported by the NIH. “NAPA has reinforced what we are doing now and this act will accelerate and expand this process,” he said. “This committee will provide a more explicit structure of where we are and where we need to be.”
Dr. Hodes is one of the 10 federal employees who will also serve on the NAPA Advisory Council. Others in the group will include HHS representatives from the Office of the Assistant Secretary for Planning and Evaluation, Office of the Assistant Secretary for Health, Centers for Medicare and Medicaid Services, Centers for Disease Control and Prevention, Administration on Aging, Health Resources and Services Administration, Agency for Healthcare Research and Quality, Substance Abuse and Mental Health Services Administration, Food and Drug Administration, Indian Health Service, and Administration for Children and Families.
Dr. Hodes said that he hopes the new council will “further refine our judgments about research.” For instance, the NIH agency has just started to fund research on induced pluripotent stem cells to study AD. He said that there will be a strong effort made to design studies to begin treating at the earliest signs of disease, even before symptoms develop.
Dr. Petersen said he is ready to get to work. “We now understand that Alzheimer's is multi-factorial. We are beginning to figure out what the different biomarkers mean to every stage of the disease. We do have gaps in knowledge. We need to know the cascade of events that take place and how it unfolds. As far as treatments, what works at 65 may not be enough at 85.”
NATIONAL ALZHEIMER'S PROJECT ACT ADVISORY COUNCIL (NON-FEDERAL MEMBERS)
- Ronald Petersen, MD, PhD, chair of the National Alzheimer's Project Act Advisory Council, professor of neurology, and the Cadieux Director of the Mayo Alzheimer's Disease Research Center and the Mayo Clinic Study of Aging in Rochester, MN.
- Anita Albright, director of the Office of Healthy Aging and Disability in the Massachusetts Department of Public Health.
- Laurel Coleman, MD, attending physician at Maine Medical Center and Central Maine Medical Center's Palliative Care Team.
- Eric J. Hall, founding president and chief executive officer of the Alzheimer's Foundation of America Inc.
- David P. Hoffman, MEd, director of the Bureau of Chronic Disease Prevention and Control, Long-Term Care Restructuring, and Partnership within the Office of Long Term Care in the New York State Department of Health.
- Harry M. Johns, president and chief executive officer of the Alzheimer's Association.
- Jennifer J Manly, PhD, associate professor in the Cognitive Neuroscience Division of the Columbia University Taub Institute for Research on Alzheimer's Disease and the Aging Brain and the GH Sergievsky Center.
- Helen M. Matheny, MS, director of the Alzheimer's Disease Outreach and Registry Program at the Blanchette Rockefeller Neurosciences Institute.
- David Hyde Pierce, actor, whose grandfather had AD and who shared care-giving duties with his siblings when his father developed dementia.
- Laura Trejo, general manager of the Los Angeles Department of Aging and founder of El Portal: Latino Alzheimer's project and a local provider of long-term services and supports, including Older Americans Act programs.
- George Vradenburg, chairs the national advocacy network USAgainstAlzheimer's and the Geoffrey Beene Foundation Alzheimer's Initiative.
- Geraldine Woolfolk, former teacher who served as a caregiver for both her mother and father, and has been caring for her husband for the past 11 years.