LEAD Group of Influential Stakeholders Develop Framework to Defeat Alzheimer's

Patient Expert

Who ever said collaboration is dead? Forty major stakeholders including advocacy groups, major pharmaceutical companies, foundations, and higher education have worked together under the name of Leaders Engaged on Alzheimer's Disease (LEAD) to develop A Framework for a Transformative National Plan to Defeat Alzheimer's Disease. "The strength of LEAD is its capacity for a vibrant exchange of information and promotion of outcome oriented strategies utilizing our collaborative strengths," the report states. "Our goal, simply stated, is to stop Alzheimer's disease by aggressively supporting policies and strategies known to be both effective and innovative."

Participating organizations include AHAF Alzheimer's Disease Research, Alliance for Aging Research, Alzheimer's Drug Discover Foundation, Alzheimer's Foundation of America, Alzheimer's Research and Prevention Foundation, American Association for Geriatric Psychiatry, American Geriatrics Society, American Life Science Pharmaceuticals, Inc., Banner Alzheimer's Institute, Baylor College of Medicine, Coalition Against Major Diseases/Critical Path Institute, Cure Alzheimer's Fund, Direct Care Alliance, Eisai Co., Elan, Eli Lilly & Company, Geoffrey Beene Foundation, Inspire, Institute of Medicine, Janssen Alzheimer's Immunotherapy Research and Development, Johnson & Johnson, Mayo Clinic, National Association of State Units on Aging, National Alliance for Caregiving, National Association of States United for Aging and Disabilities, National Association of Area Agencies on Aging, National Council on Aging, National Family Caregivers Association, Parkinson's Action Network, Pfizer Inc., Project Lifesaver, The Gerontological Society of American, University of Washington, USAgainst Alzheimer's, Visiting Nurse Associations of America and Volunteers of America.

LEAD established four workgroups in the areas of research, clinical care, long-term care support and services, and drug discovery and development that identified priority recommendations.   The strategies that emerged include:

  • Triple the amount of funding for Alzheimer's disease research through the National Institutes of Health (NIH) while reducing duplication and spurring outcomes-oriented innovation.
  • Support the implementation of proven models for Alzheimer's care that adequately reimburse healthcare professionals for improved care.
  • Support training requirements related to dementia for healthcare professionals who manage or care for people with Alzheimer's. Also, ensure that services and support care are available to all people who have Alzheimer's.
  • Create incentives to encourage the development of new therapies for Alzheimer's disease. These incentives can include enhanced market exclusivity, development of large scale patient registries and expedited development of qualified biomarkers.
  • Create a dedicated fund at the U.S. Department of Health and Human Services that can be used to aggressively invest in small businesses that are developing treatments and therapies that present the best chance for reducing Medicare and Medicaid spending on this disease.

I really appreciate that this diverse group of stakeholders has taken a proactive stand in developing and communicating these strategies to the Advisory Council on Alzheimer's Research, Care, and Services. The advisory council, which was created by the U.S. Congress, is tasked with providing feedback on the National Plan for Alzheimer's Disease and Related Dementias that is being developed by the U.S. Department of Health and Human Services as it carries out the National Alzheimer's Project Act. This 27-member advisory council meets quarterly to discuss the efficacy of government programs that are targeting the needs of individuals with Alzheimer's disease as well as those of their caregivers.   The council also will make recommendations for priority actions.

Hopefully, LEAD stakeholders and the advisory council can provide the "oomph" to get the bureaucracy in Washington, D.C. to take action in a timely manner. This work is too important when you consider the alternative. "If current trends are not arrested, the U.S. will have spent over $2 trillion by 2020 to care for Americans with this disease," the LEAD report states. "These frightening numbers do not include the 12.5 billion hours of care delivered by 15 million caregivers valued at over $144 billion for the more than 5 million estimated people with Alzheimer's disease."