“It is our hope that the United Nations will realize that Alzheimer’s disease is too costly for the global community to be ignored,” said Congressman Edward Markey (D-Massachusetts). According to Markey’s office, the number of people worldwide with Alzheimer’s will reach 115 million by 2050. The cost of Alzheimer’s and similar dementias totaled more than $600 billion, or 1 percent, of the world's Gross Domestic Product last year, according to the June 15 letter.

In the U.S. alone, care for people with Alzheimer’s is expected to cost $20 trillion over the next four decades, according to a report from the Alzheimer’s Association. The growing threat of Alzheimer’s, concomitant with the aging American population, is a stated priority for many national representatives as well as President Obama. Presidential hopeful Newt Gingrich, co-chair of the now-defunct Alzheimer’s Study Group which pushed for the National Alzheimer’s Project Act (NAPA), called Alzheimer’s research “grotesquely underfunded” at the Alzheimer’s Association Advocacy Forum in May (see also ARF related news story).

Obama signed NAPA on 4 January 2011 (see ARF related news story). This month, the Department of Health and Human Services (HHS) is taking a step toward implementing the new law. In the June 10 Federal Register, HHS called for nominees for the advisory council required by NAPA. Members will report annually to Congress on their recommendations and the nation’s progress in battling AD.

NAPA and the committee’s recommendations will be “terrifically useful,” said George Vradenburg, chairman of USAgainstAlzheimer’s. He anticipates a clear scientific plan with adequate funding; clinical guidelines to help doctors recognize AD and advise patients; and a long-term plan to improve quality of care for people with Alzheimer’s.

The new advisory council committee will work within the office of HHS Secretary Kathleen Sebelius. The plan will coordinate efforts across federal agencies to support Alzheimer’s research as well as care for people who have the disease. The 22-member committee will include two independent Alzheimer’s researchers. In addition, it will seat advocates and government representatives. It is expected to form by the end of the summer, with Sebelius to present their plan for Alzheimer’s research and care to Congress early next year.

NAPA includes no specific provisions for funding, so HHS has had to appropriate monies from other projects. “We expect that any robust national Alzheimer’s plan will require additional funding,” said Robert Egge, who became vice president of public policy at the Alzheimer’s Association after his prior work on the Alzheimer's Study Group. Given the current federal budgetary concerns, he said, “It will be tough…we think we are going to get this done.”

Nominations for the NAPA committee are due 30 June 2011.

NAPA is the best known of several Acts related to Alzheimer’s disease; three others are pending. The Alzheimer’s Breakthrough Act asked for $2 billion per year in research funding last year, but did not succeed. The Act’s authors, Congressmen Markey and Chris Smith (R-New Jersey), have retooled the Act to require the National Institutes of Health to provide a specific cost estimate for the research it deems necessary.

One obstacle to Alzheimer’s treatment is that Medicare currently provides no specific provisions for diagnosing and counseling people with Alzheimer’s and their caregivers. The Health Outcomes, Planning, and Education (HOPE) for the Alzheimer’s Act, also sponsored by Markey and Smith, would add a reimbursement code to Medicare to encourage doctors to spend more time with people who show signs of dementia or are diagnosed with Alzheimer’s. Caregivers would also be included in the conversation. It is not known when the Breakthrough and HOPE acts will go up for voting.

Money is ever the issue. On this front, Congressman Michael Burgess (R-Texas) introduced the MIND Act, which aims to authorize U.S. Treasury “Alzheimer’s Bonds” to raise funds for research (see related news story) directly from citizens.—Amber Dance.