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NEWS & VIEWS

DENIAL OF SYMPTOMS DELAY DIAGNOSIS OF AD

Concern about stigma and denial of symptoms can delay diagnosis of Alzheimer disease (AD) by more than a mean of three and a half years after symptom-onset. And when caregivers are worried about stigma, the diagnosis is delayed by an average of six years, according to a survey from the Alzheimer's Foundation of America.

The findings suggest that public education about the disease may help in earlier diagnosis: two in five caregivers said lack of knowledge about AD was a barrier to diagnosis. While 92 percent of caregivers said they were aware that medications may slow the progression of symptoms, only 51 percent said they knew about the opportunity for combination therapy.

To encourage patients to discuss possible symptoms of AD, neurologists and primary care physicians should ask new patients whether they have been experiencing problems with memory or forgetfulness while avoiding speaking directly of dementia, said Carol F. Lippa, MD, Director of the Memory Disorders Center at Drexel University in Philadelphia, PA.

“Let people know that major forgetfulness does not go hand-in-hand with aging,” she said in an e-mail to Neurology Today. “It's never normal to have memory losses bad enough to interfere with functioning.” She added that neurologists should emphasize to patients that most medicines work better in the early stages of the disease and that some forms of memory loss are reversible.

The survey, I CAN: Investigating Caregivers' Attitudes and Needs, is based on interviews conducted from Jan. 30 to Feb. 8 with 539 individuals across the US who are currently caring for someone with Alzheimer disease. To view the survey, visit www.alzfdn.org.

EXPERTS SAY STEM CELL PATENTS HINDER RESEARCH

While the current administration's federal funding ban on embryonic stem cell lines created after 2001 is onerous, a more daunting barrier to stem cell research may be the patents and price of access to lines owned by the University of Wisconsin, according to authors of an editorial published in the March 24 issue of Science (24:1716–1717).

The patents are held by the Wisconsin Alumni Research Foundation (WARF), on behalf of University of Wisconsin Primate Center Assistant Professor James Thomson, VMD, PhD. In 1995, Dr. Thomson became the first scientist to isolate primate embryonic stem cells. A patent issued in 1998 claims rights to nonhuman primate and human embryonic stem cells, while the second patent, issued in 2001, specifically covers human cells. This means that all scientists in the US must sign a contract with WARF and pay user fees if they want to work with any type of embryonic stem cells.

Through an agreement with the NIH, which funded Dr. Thomson's research and therefore retains rights to the 1998 patent, WARF lowered the price it charges academic researchers for use of the cells from $5,000 to $500. To obtain a license from WARF, commercial biotechnology and pharmaceutical companies must pay an upfront fee of up to $125,000, and pay $40,000 annually to maintain the license.

In the editorial, stem cell researcher Jeanne F. Loring, PhD, and patent attorney Cathryn Campbell, PhD, write that the expensive license fees make it especially difficult for start-up biotechnology companies to conduct embryonic stem cell research. Dr. Loring, an embryologist at the Burnham Institute in La Jolla, CA, noted that when she tried to raise money for her stem cell company, Arcgen, in 1999, many venture capitalists were reluctant to invest because of concerns about the 1998 patent – specifically, that the work done by the company would be owned by someone else. The company was eventually sold because they could not raise sufficient funds, she said.

Dr. Loring said in an e-mail to Neurology Today: “Most scientists in academia know next to nothing about patents, even if they are inventors on them, and many have assumed that ‘someone’ will just overturn the WARF patents. They don't realize that patents are almost never overturned, and companies are put out of business on a regular basis because they are accused of infringing patents and can't afford to defend themselves.”