Sandra Day O'connor, Newt Gingrich Testify At Aging Hearing On Alzheimer's, USA

Main Category: Alzheimer's / Dementia
Article Date: 16 May 2008 - 0:00 PDT

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U.S. Senate Special Committee on Aging Chairman Herb Kohl (D-WI) held a hearing on Alzheimer's, a disease that currently affects over five million Americans and their families. Witnesses provided an update on the latest research and treatments, issues surrounding early-onset diagnoses, the importance of training and support for patient caregivers, and the need for a comprehensive strategy as more and more Americans are diagnosed with the disease. It is projected that without a cure, or the discovery of some treatment that could delay the onset or progression of Alzheimer's, there will be almost a half million new cases of Alzheimer's disease each year beginning in 2010; by 2050, there will be a million new cases each year.

"Alzheimer's disease is a growing national crisis and we must commit to addressing it in the most comprehensive way possible. There are enormous costs, both personal and financial," said Chairman Kohl. "We urgently need to prepare for the impending rise in Alzheimer's patients, and determine if it's possible to curb this mounting epidemic."

Committee members and panelists discussed the Alzheimer's Breakthrough Act, introduced last year by Senators Barbara Mikulski (D-MD), Kit Bond (R-MO), Hillary Clinton (D-NY), and Susan Collins (R-ME). The bill would double the funding for Alzheimer's research at the National Institute for Health (NIH) to $1.3 billion. Chairman Kohl supports the legislation, which was passed through the Senate HELP Committee in July of last year.

The hearing also touched on Kohl's forthcoming bill that would offer training and support services to family caregivers. At a recent Aging Committee hearing on the long-term health care workforce, Chairman Kohl announced his plan to introduce the legislation. Currently, almost 10 million Americans are caring for a person with Alzheimer's disease or other dementias. Such caregivers frequently do the same work as a professional caregiver, but they do so voluntarily and with little or no training or access to broader support services.

The Genetic Information Non-Discrimination Act (GINA) was also discussed at today's hearing. GINA recently passed both chambers of Congress, in the House with only one no vote and in the Senate with unanimous support. The bill is currently awaiting the President's signature. Due to recent gains in the areas of gene mapping and genetic testing, this legislation is of particular importance to the Alzheimer's community because genetic information plays an invaluable role in the early detection and treatment of the disease. "This legislation will protect the right of Americans to seek out genetic testing without fear that the results will be used against them by an employer or insurance provider," Chairman Kohl said. "Our hope is that this protection will encourage broader utilization of testing methods, and a greater chance of early intervention where possible."

Former Supreme Court Justice Sandra Day O'Connor and former Speaker of the U.S. House of Representatives Newt Gingrich both offered testimony as members of the Alzheimer's Study Group. Justice O'Connor discussed the needs of family caregivers and called for a national strategic plan for dealing with all aspects of the disease. Speaker Gingrich further addressed the goals of the study group, outlining potential policy implications related to Alzheimer's diagnosis and treatment.

Charles "Chuck" Jackson, a patient dealing with Alzheimer's, shared his personal story of being diagnosed and the impact on his work, family, and life, including the unique challenges that face a patient diagnosed before age 65. Suzanne Carbone offered testimony regarding her experience as a caregiver to her husband who suffers from Alzheimer's, including the challenges faced by caregivers and the importance of training and community support. Finally, Dr. Rudi Tanzi, a preeminent Alzheimer's researcher, issued a broad update on the latest research and work toward a cure, including new improvements in testing, diagnosis and treatment, and also stressed the importance of further research. Dr. Tanzi is the Director of Genetics and Aging Research Unit at Massachusetts General Institute for Neurodegenerative Diseases, as well as a Professor of Neurology at Harvard University.

Special Committee on Aging
Senator Herb Kohl, Chair