Deaths linked to Alzheimer’s have increased in the last decade while those for stroke, breast cancer and HIV have dropped, said researchers calling for more funding for the memory-robbing disease.
Without treatment breakthroughs, the number of people in the U.S. ages 65 and older whose memories and personalities are claimed by the disease will more than double to 13.8 million in 2050, according to a report released today by the Alzheimer’s Association.
The U.S. in recent years has taken action to address a looming public health crisis tied to the aging of the Baby Boomers, the generation born from 1946 to 1964. While the National Alzheimer’s Project Act was signed into law in January 2011 to coordinate efforts to treat and prevent Alzheimer’s, funding hasn’t caught up, advocates and researchers said.
“Even before the sequester, the National Institute on Aging was only funding about 1 in 10 of the grants they received even though easily twice as many were meritorious,” said David Knopman, a professor of neurology at the Mayo Clinic in Rochester, Minnesota, and a member of the American Academy of Neurology. “It might get worse now.”
Automatic budget cuts, known as sequestration, began March 1, though the effect on Alzheimer’s research funding is uncertain. The National Institutes of Health allocated $498 million to Alzheimer’s research in 2012, and U.S. funding was expected to increase to $529 million this year with an additional $80 million from a prevention and public health fund, according to NIH data.
Almost four times that amount -- about $2.1 billion a year -- is needed to make a dent in slowing, preventing or treating Alzheimer’s within 10 years, according to a report last year from researchers assembled by the Alzheimer’s Association. The NIH’s total proposed budget for fiscal 2013 is $31 billion.
The advocacy group is trying to pattern its campaign for greater Alzheimer’s funding after activists for other diseases such as breast cancer, multiple sclerosis and HIV who have succeeded in raising funds and awareness for their causes.
Alzheimer’s as a cause of death increased 68 percent from 2000 to 2010, compared with declines of 23 percent for stroke, 8 percent for prostate cancer, 2 percent for breast cancer, 16 percent for heart disease and 42 percent for HIV, according to today’s report. Alzheimer’s now is the sixth-leading cause of death in the U.S.
“We’re getting better at treating other diseases,” Maria Carrillo, vice president of medical and scientific affairs at the Chicago-based Alzheimer’s Association, said in an interview. “Breast cancer and HIV have had movements behind them. Alzheimer’s doesn’t have that.”
The problem has been, in part, a stigma around a disease with no cure and few treatments, said Beth Kallmyer, the association’s vice president of constituent services.
Like in the earlier days of cancer, “there’s nothing you can do,” Kallmyer said in an interview. “We don’t have survivors.”
As people are living longer and extending retirement sometimes even into their 70s, their passion for activism is starting to pick up, Carrillo said.
“We’re seeing this rally cry starting now,” she said.
Progress toward new drugs for Alzheimer’s was dealt a setback last year when two late-stage candidates failed to show efficacy in clinical trials. Eli Lilly & Co. (LLY)’s solanezumab and bapineuzumab, from Pfizer Inc. (PFE), Johnson & Johnson (JNJ) and Elan Corp., didn’t improve patients’ memory or thinking, though the drugmakers are pursuing ways to test the medicines in patients in earlier stages of the disease.
The only drugs currently available for Alzheimer’s temporarily treat its symptoms, rather than slowing or reversing the disease. The U.S. Food and Drug Administration proposed in February to ease guidelines for Alzheimer’s drug development as companies turn their sights on earlier stages of the disease, citing an urgent need for effective treatments as the global population gets older.
Despite the paucity of treatments available, it’s important for patients and their families to identify Alzheimer’s, physicians say. As many as half of the estimated 5.2 million Americans with the disease may not know they have it, according to the Alzheimer’s Association.
“In a way, it’s more important to talk about since there aren’t a lot of drugs,” Charles Cutler, a general internist who practices in Norristown, Pennsylvania, said in a telephone interview.
Alzheimer’s can make taking care of just about any other condition more difficult, said Barbara Messinger-Rapport, a physician and the director of the Center for Geriatric Medicine at the Cleveland Clinic. If a patient has diabetes, remembering diet and medications can be difficult, and patients with other chronic conditions may forget to take pills or do therapy.
The burden is greatest on those who don’t qualify for government assistance or have the money to pay for help.
“The very wealthy and the very poor have options, and there’s a wide swath of people in the middle who do not get optimal care,” Messinger-Rapport said. Adult day care in Cleveland, for example, costs about $100 a day. “Who can afford that?”
Lacking the resources to hire help, family members often have to take time to care for elderly parents.
“I see those in my practice daily,” Messinger-Rapport said. “I see women -- often it’s women -- who give up their careers or cut back their work hours so they can provide for the stability their parent needs.”
As the prevalence of Alzheimer’s grows, the disease may be underestimated as a cause of death in the U.S., according to the Alzheimer’s Association. Death certificates often don’t tell the entire story, Messinger-Rapport said. Patients can die of malnutrition because of dementia when they forget how to chew and swallow food.
“I personally put down Alzheimer’s as a diagnosis when I feel that the Alzheimer’s disease led to the decline that caused the death,” she said.
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