A new law calls for the creation of a national strategic plan to address Alzheimer’s disease and halt the avalanche of new cases that could overwhelm the federal health care system within the next 50 years.
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In 1901, Auguste Deter, shown here, became the first patient to be diagnosed with Alzheimer's disease.
Unanimously passed by both the Senate and the House before Christmas, the National Alzheimer’s Project Act (S. 3036) was signed by President Obama Jan. 4.
Under the new law, the Office of the National Alzheimer’s Project will be created within the Health and Human Services department. President Obama will appoint the director, who is to work with an advisory council "to promote research efforts into mechanisms to slow and stop the development of Alzheimer’s for those at risk of developing the disease."
HHS Secretary Kathleen Sebelius expressed her support for the bill on Dec. 15, as it entered its final legislative stages. "I applaud Congress for passing the National Alzheimer’s Project Act with bipartisan support," she said in a statement. "We ... recognize the devastating impact Alzheimer’s has on America’s seniors, families and our health care system. The passage of this act will help to ensure we confront this challenge with an aggressive and coordinated national strategy."
The new advisory council will be tasked with assessing how to address Alzheimer’s on multiple fronts including research, advocacy, patient care, and caregiver support, according to Harry Johns, president of the Alzheimer’s Association.
"The Alzheimer’s Association is pleased that a much-needed plan will now be put into place to address the challenges of Alzheimer’s disease," he said in a statement. "Given the devastation experienced by millions of families because of this disease and the staggering economic costs, particularly to Medicare and Medicaid, we must have an effective strategy now. The fact that Alzheimer’s is the only one of the top 10 causes of death without a way to prevent, cure, or even slow it underscores the critical need for the swift, aggressive implementation of this legislation."
The advisory council will comprise eight federal appointees – including the Surgeon General – as well as 12 expert nonfederal members: two patient advocates, two caregivers, two health care providers, two state health department representatives, two researchers, and two volunteer association representatives.
The council is to meet quarterly and provide Congress with an annual report evaluating all nationally and federally funded efforts in Alzheimer’s research, clinical care, institutional, and home- and community-based programs and their outcomes. The council is also required to provide an annually updated national Alzheimer’s response plan.
The annual reporting requirement might be what sets this plan apart from other similar laws, according to Robert Egge, vice president of public policy and advocacy for the Alzheimer’s Association.
"Some [laws such as this] have mattered very little and some have made very large impacts," he said in an interview. "We think all the elements are here to make this a meaningful piece of legislation. One very important element is the requirement of annual reporting to Congress. This will create an ongoing dialogue we have never had about Alzheimer’s disease, what we are doing about it, and how we are progressing."
Mr. Egge pointed out that the new law may help direct how federal dollars are spent on Alzheimer’s care and research.
"We are already spending an awful lot on this disease - $172 billion per year – but most of that is in a reactive, not proactive way. What this task force will wrestle with is how to spend money in the best, most strategic ways – which will lead to great opportunities for proactive strategies."
Still, the law does not earmark funding for patients, caregivers, support organizations, or research. As such, its intent seems more to draw federal and public attention to the looming Alzheimer’s crisis, rather than directly boost research funding, said Dr. Marwan N. Sabbagh, director of the Cleo Roberts Alzheimer’s and Movement Disorder Clinic at Banner Sun Health Research Institute, Sun City, Ariz.
"Signing the National Alzheimer’s Project Act into law provides an important first step toward developing a framework in which the medical and scientific community, as well as legislators and activists, can tackle this growing epidemic," he said in an interview. "Presently, research in Alzheimer’s is underfunded and current treatment options are limited. This act will increase awareness that address this disease. More needs to be done, however, including a major increase in research funds and emphasis on participation in research studies."
Dr. Richard J. Caselli