Care or a cure? How should Alzheimer’s funds be spent?

Lawmakers, researchers debate tough question

(Republished with permission from the St. Louis Post-Dispatch. This article originally ran on Monday, July 3, 2006.)

Scientists who study Alzheimer’s disease say they are on the brink of finding treatments to slow or stop it.

Some experts think the cost of caring for Alzheimer's patients could soon be more than our economy can bear.
Some experts think the cost of caring for Alzheimer’s patients could soon be more than our economy can bear.

Projections are that by 2050, 16 million Americans will have the disease. Already 4.5 million do. Caring for people with Alzheimer’s costs at least $100 billion each year.

As the older population doubles over the next 25 years, Alzheimer’s could become the country’s most costly disease.

Within five years of a treatment that would delay the onset of Alzheimer’s, “the potential annual savings are $50 billion in Medicare and $10 billion in Medicaid,” according to Steve McConnell. He is vice president of advocacy and public policy at the Alzheimer’s Association in Chicago.

A few weeks ago, Congress voted to reduce funding for research on Alzheimer’s disease.

“We spend $100 billion a year on a disease no one in his right mind would want, but fight that with only $650 million and declining,” said Dr. David A. Bennett, director of the Rush Alzheimer’s Disease Center at Rush University Medical Center in Chicago. “It just makes no sense.”

People who are worried about getting Alzheimer’s shouldn’t run to their doctors, they should write their congressmen, Bennett said.

Pam Rwankole, public relations manager for the Alzheimer’s Association, said that the “good news is that federal funds for care and support programs are OK.”

In Missouri, where at least 110,000 residents have Alzheimer’s, Gov. Matt Blunt recommended increasing funds for care and support for the 2007 fiscal year, but not for research.

“The money is going to where it does the most good, which is care,” said Spence Jackson, director of communications for Blunt. “The limited state resources should go to people who already have Alzheimer’s in order to let them live with it as best they can so they can remain in their homes.”

“The money going for research wasn’t being used for research that was near getting a cure,” Jackson added.

The Lasker Foundation rated the disease the third most costly in the nation, behind heart disease and cancer.

“It’s a disease of the century and could bankrupt our society if we don’t find a way to stop it,” said McConnell, of the Alzheimer’s Association. “There’s been enormous progress in disease-modifying treatments, but with the funding cut, we slow the day we get an intervention.”

Scientists who study Alzheimer’s say they are close to finding a treatment.

“The data are turning out better than we ever anticipated,” said Anne Fagan Niven, professor of neurology at Washington University School of Medicine.

“The real kicker is that we think that Alzheimer’s disease pathology begins approximately 10 to 20 years before symptoms,” Niven said. “Once you see the symptoms, many neurons have already died. In order to best preserve normal brain function, you want to treat before symptoms start.”

Researchers believe they have found biomarkers in cerebrospinal fluid that could identify individuals with the disease before they show signs of dementia.

Vaccinations for Alzheimer’s disease have shown promise in mice and are in clinical trials in people.

“We’re finding disease-modifying treatments for the first time,” said David Holtzman, professor and chairman of the neurology department at Washington University School of Medicine. The progression of Alzheimer’s disease is relatively slow, and it takes at least two years to know whether a treatment is really delaying the onset, Holtzman said.

Tom Meuser is director of education and rural outreach at the Alzheimer’s Disease Research Center at the Washington U. medical school. He said, “It’s great that both the Missouri and federal governments are open to increasing funding for Alzheimer’s-related services.

“But we need to help folks with the disease now and invest to make this a treatable and preventable disease in the future.”

State Rep. Judy Baker, D-Columbia, sat on the committee that appropriates funding for Alzheimer’s disease research in Missouri when the funding was cut. “The research program was put back into the 2006 budget, but then the governor vetoed it,” Baker said.

Since 1987, the state has appropriated about $225,000 – a minuscule percentage of the budget, Baker said – nearly every year to the Alzheimer’s Disease and Related Disorders Program, which distributes the funds as small seed grants to researchers in Missouri.

At least $10 in federal money is awarded for every $1 the state contributes, said Armon Yanders, director of the program and emeritus professor of biological sciences at the University of Missouri at Columbia. Since the program began in 1987, the state’s investment of $2.5 million has led to at least $20 million in federal funds awarded to Missouri researchers.

“What’s nice about these (non-National Institutes of Health) granting agencies is that they allow scientists to test a hypothesis that isn’t enough to get federal funding,” said Niven, who was awarded a grant from the Alzheimer’s Disease and Related Disorders Program in 1998 when she was just beginning her research lab at Washington U. She used preliminary data she received from the Missouri seed grant to obtain $700,000 in federal funds.

Funding is “in and out of the budget, and at some point it should stick,” said state Rep. Ed Robb, R-Columbia, who recommended Alzheimer’s research funds for the budget. “It’s there for an obviously good cause.”

Illinois has a check-off program on its tax forms that allows residents to contribute to the Alzheimer’s Disease Research Fund. Since the program began in 1985, at least $3 million has been donated to support 130 research projects, according to Lorraine Willmot, director of communications for the Alzheimer’s Association, Greater Illinois Chapter in Skokie. California, Colorado, Arizona, Oregon and New York also have check-off programs for Alzheimer’s research.

Tina Hesman Saey of the Post-Dispatch contributed to this report.

mmcelroy@post-dispatch.com 314-340-8214

Copyright 2006 St. Louis Post-Dispatch, Inc.