Arthritis Support and Education: Avoiding Fraud

Living With Arthritis

Support and Education

Support groups and arthritis education can help people learn how to listen to their disease, and cope with it. "The psychological aspects are very important because that's what changes people's lives," Ginsburg says.

Participants learn practical things, such as how to: get up off the floor after a fall, protect joints with careful use and assistive devices, drive a car, get comfortable sleep, use heat and cold treatments, talk with their doctors, and cope with emotional aspects of pain and disability. They may also learn to acquire and maintain what health experts have long touted--a positive attitude.

Health education not only improves quality of life, but also lowers health-care costs, and the benefits are lasting, according to studies at Stanford University, Palo Alto, Calif. Four years after a short Arthritis Self-Management Program, participants still reported significantly less pain and made fewer physician visits, even though disability increased. The benefits came, not from the specifics taught, but from improved ability to cope with the consequences of arthritis--in other words, confidence. "It's the same thing that any good coach tries to instill," says Halsted R. Holman, M.D., Stanford University.

Avoiding Fraud

Learning to understand their disease can also help make people less likely to fall victim to fraud. Because they have a painful, incurable condition, people with arthritis are among the prime targets for fraud and spend nearly a billion dollars annually on unproved remedies, largely diets and supplements.

A claim describing the relationship between a nutrient or dietary ingredient and a disease, such as arthritis, cannot be made on the label or in labeling of a food or dietary supplement unless the claim is authorized by FDA. In order for FDA to consider authorizing the use of a health claim, there must be significant agreement among qualified experts that the health claim is scientifically valid. As of December 1996, FDA had not authorized any health claims for a relationship between any food or dietary supplement ingredient and arthritis. Sometimes, however, food or dietary supplement products are found on the market with unauthorized claims.

"If the claim sounds too good to be true, it probably is. Talk to your doctor or other health professional," says Peggy Binzer, a consumer safety officer in FDA's Center for Food Safety and Applied Nutrition.

Consumers who have questions or wish to report a company for falsely labeling its products should call FDA's Office of Consumer Affairs at (301) 443-3170 from 1 p.m. to 3:30 p.m. Eastern time. Consumers who have suffered from a serious adverse effect associated with the use of a dietary supplement should report the effect to their health-care professional or to MedWatch at (1-800) FDA-1088.

Avoiding Fraud - Unconventional Therapy

Some remedies, such as vinegar and honey or copper bracelets, seem harmless. But they can become harmful if they cause people to abandon conventional therapy. Others, such as the solvent dimethyl sulfoxide (DMSO), can be outright dangerous. (See "An FDA Guide to Choosing Medical Treatments," FDA Consumer, June 1995.)

It's tempting to conclude that arthritis pain gets better or worse because of what was added or eliminated from the diet the day or week before. However, gout is the only rheumatic disease known to be helped by avoiding certain foods. The unpredictable ups and downs of arthritis make it hard to establish a relationship between diet and disease. Scientists have only recently begun to study nutritional therapy for arthritis, and the American College of Rheumatology (ACR) urges continued research.

The ACR Position Statement on Diet and Arthritis advises, "Until more data are available, patients should continue to follow balanced and healthy diets, be skeptical of 'miraculous' claims and avoid elimination diets and fad nutritional practices."

Research Under Way

New treatments are likely to stem from better understanding of the underlying causes and destructive processes of the disease. Overuse, injury and obesity are contributing factors in osteoarthritis, and researchers have implicated a faulty gene in the breakdown of cartilage. Heredity plays a role in other forms of arthritis, too, increasing susceptibility in some people. Potential genetic therapy approaches are still far off, however.

Increased knowledge of immunology and the inflammatory process offers more immediate promise. Researchers have developed a drug that blocks the effects of TNF-alpha, an inflammatory protein responsible for reactions resulting in joint damage. In short-term preliminary trials, the drug significantly reduced symptoms in rheumatoid arthritis patients.

Such results are encouraging, but the ultimate goal is to understand what start s the immune response in the first place. "Until you know the real cause, you're not going to have the right drug," Ginsburg says.

That quest continues and offers hope. But short of a cure, enlightened coping may be the most promising avenue to a less taxing life for people with arthritis.