Legislation Creates National Agenda on Alzheimer Disease, Though No New Funds

Neurology Today
20 January 2011; Volume 11(2); pp 1,20-21

Talan, Jamie

Abill passed by Congress in December — the National Alzheimer's Project Act (NAPA) — which is expected to be signed into law by President Obama — promises to create a home for all aspects of care, treatment and research for the disorder. While there are thousands of researchers and neurologists who receive federal money to study Alzheimer disease (AD), there has never been a coordinated effort to set a national agenda before now.

THE NEW BILL gives the Secretary of Health and Human Services authority to evaluate all federal Alzheimer disease programs, including budget requests.

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The legislation authorizes the US Department of Health and Human Services to create an interagency advisory committee to study the government's efforts in addressing AD and to accelerate the development of treatments to prevent or slow the disease.

The advisory committee will make recommendations on the existing research and clinical efforts and the gaps in the programs. The committee will also weigh in on programs available to patients and their families and how a national focus on AD should be developed and managed.

“This is a very ambitious bill and a huge advance for the field,” said Alzheimer disease researcher Steven T. DeKosky, MD, who is now vice president and dean of the University of Virginia School of Medicine. “Hopefully, this will become a comprehensive gathering of all the people who work on Alzheimer's. It has the potential to do really good things. Could this have happened without such legislation? Probably not.”

Once President Obama signs NAPA, the federal government will turn to AD leaders to solicit names of people from all walks of AD care, advocacy, research and treatment to form a council to assess all federally funded efforts and make recommendations about how to move forward in a coordinated national effort.

The Advisory Council will include experts from the Centers for Disease Control and Prevention, the NIH, the Indian Health Service, the Centers for Medicare & Medicaid Services, the Food and Drug Administration, the Department of Veteran's Affairs, the Agency for Healthcare Research and Quality, and the National Science Foundation. The Surgeon General will also sit on the council, as well as a dozen non-federal members that will include patient advocates, caregivers and healthcare providers.

DR. STEVEN T. DEKOSKY: “This is a very ambitious bill and a huge advance for the field. Hopefully, this will become a comprehensive gathering of all the people who work on Alzheimer's. It has the potential to do really good things. Could this have happened without such legislation? Probably not.”

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In addition to an integrated national plan, the new office will work towards the improvement of techniques to diagnosis Alzheimer's earlier and coordinate the care and treatment of patients throughout the country. The bill gives the Secretary of Health and Human Services authority to evaluate all federal AD programs, including budget requests.

“The bill is almost breathtaking when you read it,” Dr. DeKosky added. “We need to be more efficient and effective in the way we care for patients and their families. What we have learned in the last 25 years is that we are not going to have ways to stop this disease any time soon. The more we learn, the more complicated it gets.”

Last March, Senator Evan Bayh (D-WVA) and Senator Susan Collins (R-ME) introduced the legislation in the Senate (S.3036) and Rep. Ed Markey and Rep. Chris Smith (H.R.4689) introduced it in the House.

There are estimates that a third of the Medicare and Medicaid budgets are spent taking care of AD patients, said Rudolph E. Tanzi, PhD, Joseph P. and Rose F. Kennedy Professor of Neurology at Harvard Medical School and director of the Genetics and Aging Research Unit at Massachusetts General Hospital's Institute for Neurodegenerative Disease.

Spending is expected to increase to $805 billion by 2050. With 70 million baby boomers reaching the age of increased risk, “if we don't have a national plan to solve Alzheimer's we will have a national emergency on our hands,” said Dr. Tanzi, who spoke in September at a meeting assembled by the White House to discuss the need for NAPA and more funding for AD research.

DR. RUDOLPH E. TANZI: “We are not hurting for ideas about what to study, but we are limited by budget and resources.”

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It was the first time that the White House called for a state of the situation on AD — from clinical care to outreach to research.

The field is constrained by a lack of financial resources, Dr. Tanzi added. “We are not hurting for ideas about what to study, but we are limited by budget and resources,” he said.

The new federal legislation does not promise new money but the hope is that the attention given to AD and the seriousness of the problem will lead to more money for research, he said. Right now, the government's annual federal budget for AD is $500 million. By comparison, the NIH allocates $6 billion to cancer, $4 billion to cardiovascular disease, and $2 billion to HIV/AIDS.

Tim Armour, president and chief executive officer of the Cure Alzheimer's Fund, which helped advocate for the legislation in collaboration with the Alzheimer's Association, thinks the money will come. “Bringing all the players together raises the profile of Alzheimer disease within the federal government and provides a more focused and strategic approach,” he said.

The AAN, which joined several AD advocacy groups in pushing for the legislation, sent letters of support for the bill to both the House and Senate leadership, said AAN Professional Association Legislative Counsel Michael Amery, in an e-mail to Neurology Today. In addition, Amery contacted several key congressional offices to advocate for its passage. “As time was running out on the 111^th Congress, the Academy activated its grassroots network of advocates who sent messages to their members of Congress, as well,” he said.

There are two other independent bills winding their way through the House and Senate. The Alzheimer's Breakthrough Act could add $2 billion to the annual Alzheimer's budget. This legislation was put aside when NAPA was initiated because the NAPA bill does not include a mandate to increase federal spending on AD.

The Health Outcomes, Planning, and Education (HOPE) for Alzheimer's Act was introduced into the House last summer to amend the Social Security Act to provide for Medicare coverage of comprehensive AD diagnosis and treatment services. Both bills were sponsored by Edward Markey's office. •

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