This followed a 60 percent to 70 percent jump in deaths from 1979 to 1989 due to the autoimmune disease that has no cure, according to the U.S. Centers for Disease Control and Prevention.

And while scientists continue to make incremental strides against lupus, it remains one of the most difficult diseases to diagnose and one for which there have been no new treatment advances in more than 30 years. Despite this grim portrait, a conference held Wednesday at the 2004 International Congress on Lupus in New York City aimed to shed some hope on efforts to treat and manage the illness.

Lupus is an autoimmune disease that primarily affects women between the ages of 15 and 44. It causes the immune system to attack the body's own tissue and organs, including the joints, kidneys, heart, lungs, brain, blood or skin. The disease may eventually cause tissue damage, organ failures, disability and even death.

An estimated 1.5 million Americans have a form of the disease. Black women are three times more likely to get the disease as white women; Hispanic and Asian women are also at higher risk.

One of the primary challenges of lupus diagnosis and treatment has been the lack of any "biomarkers" -- or physical indicators -- to gauge who has the disease and how it is progressing.

"There is an urgent need for biomarkers," said Dr. Joseph Ahearn, senior author of one of the studies presented at the conference and co-director of the University of Pittsburgh's Lupus Center of Excellence. "We need improved methods of diagnosing lupus so we can make sure that when we are evaluating and treating patients we know this is lupus and not some other disease."

Symptoms of lupus can mimic other illnesses, and range from mild to life-threatening. They include achy joints; frequent fevers of more than 100 degrees F.; arthritis; prolonged or extreme fatigue; and skin rashes. The disease can also enter periods where symptoms aren't present, only to flare up unexpectedly, according to the Lupus Foundation of America.

Doctors also need blood tests so they can monitor the activity of the disease, Ahearn added. "It would be nice to be able to monitor disease activity more accurately and perhaps even predict upcoming flares, which would allow us to institute therapy earlier, prevent hospitalizations and reduce the time of the flare," he said.

The right biomarkers might also provide incentives to pharmaceutical companies to develop drugs to treat lupus. As it stands now, drug manufacturers have no way of knowing whether a particular drug is working, so they have been reluctant to participate in clinical trials, Ahearn said.

Ahearn and his Pittsburgh colleagues have determined that measuring fragments of two different proteins might provide the right clues as to what the disease is doing to the body. After looking at hundreds of patients, they discovered that the fragments attach to red blood cells. "Not only are the fragments abnormally elevated on red blood cells but the levels fluctuate as the level of activity of the disease fluctuates," Ahearn said.

The Pittsburgh researchers also found the fragments on platelets, meaning they may be implicated in blood clotting. "We think this is an extremely promising route to pursue," said Ahearn, who indicated that the team is working with the U.S. Food and Drug Administration to bring this research to fruition.

Another study presented Wednesday found the incidence of stroke and heart attacks were elevated in women with lupus. Ethnicity, however, did not emerge as a separate risk factor, said study co-author Dr. Sergio M.A. Toloza, of the University of Alabama at Birmingham. A third study found that damage from lupus, rather than damage from the steroids that are used to treat the disease, was likely responsible for low bone mineral density in women with the disease.

"One of the problems has been to separate how much of the low bone mineral density is related to corticosteroids or to the disease itself," said study co-author Dr. Chin Lee, of Northwestern University. "We were able to show that the trend for lower bone mineral density seems to be associated with disease damage independent of steroid exposure." There may be ways to start compensating for this damage as soon as a diagnosis is made, the researchers said.

Finally, one study examined part of lupus' social toll. Edward Yelin, of the University of California, San Francisco looked at almost 900 people with lupus and found that while about 71 percent were working at the time of their diagnosis, only 46 percent were still in the labor force 12 years later -- a 48 percent drop. Among those who continued working, there were declines in the number of hours worked per week and the number of weeks worked per year.

"Work disability in lupus occurs much earlier in life and at much higher rates [than for other diseases]," Yelin said. "If you get a disease like lupus, then you leave work early in life and you also lose your long-term financial stability."

Also, because of the severity of the disease (seizures were one of the main reasons cited for inability to work), there were few opportunities to make accommodations in the work environment sufficient to let people keep their jobs, Yelin said.

"At this point, we do not have interventions in the disease process to change that process," Yelin said. "The work prognosis, in short, is quite poor in relation to other diseases, including forms of cancer and rheumatoid arthritis."

SOURCES: May 12, 2004, news conference, 2004 International Congress on Lupus, New York City, with Joseph Ahearn, M.D., co-director, Lupus Center of Excellence, University of Pittsburgh Schools of the Health Sciences; Sergio M.A. Toloza, M.D., the University of Alabama at Birmingham; Chin Lee, M.D., division of rheumatology, Northwestern University, Chicago; Edward Yelin, Ph.D., division of rheumatology and Institute for Health Policy Studies, University of California, San Francisco

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