AIDS: what we don't know can hurt us.

But how do we really know?" Concern furrowing her brow, a friend confronted me with this question during a recent discussion about AIDS. "The government tell us one thing, the medical community another, and there are so many books and articles that contradict each other. How do we know for sure that it can't be spread by toothbrushes or mosquitoes? What if some years down the road we find out they've all been wrong?"

Variations of this conversation are repeated aloud or internally all across the country. AIDS is such a small word, but it carries a huge load of fear and panic. We believe that it's deadly and caught easily, and more than anything, we know that we don't want it. But often our information is only partially correct. Half-truths, rumors, and outright myths abound in print and in conversation. From both a worldwide medical standpoint and a personal perspective, there are some vital things we need to understand in order to combat not just the deadly disease itself, but the destructive ignorance and prejudice that so often accompany it.

AIDS from a medical standpoint. Treavor* finally made an appointment to see his doctor. This was his third cold in five months. Now it had settled in his sinuses and persisted for weeks, causing him to blow yellow mucus from his nose frequently. In addition, his headaches were almost constant, and he felt a little warm and had lingering malaise.

The doctor questioned him closely regarding any problems with his skin, lungs, stomach, bowels, and other internal organs. Treavor recalled that his skin itched more than it used to and that even though he was using his usual dandruff shampoo daily, his dandruff was worse. At the doctor's suggestion, he had an HIV test performed at the Municipal Health Department. He was devastated when it came back positive.

With gentle questioning, the doctor learned that for several years Treavor had practiced high-risk behaviors. But in the past five years, since becoming a Christian, his life had totally changed. Treavor went on to say that after his life had turned around he was tested for HIV, and the test was negative! The doctor explained that the positive HIV test did not mean he now had AIDS; rather, that in the past he had been infected with HIV, the virus that causes AIDS. His previous HIV test was probably taken during the "window" period, the first three to 12 months of his HIV infection, when he was infectious and could spread the virus to others but still test HIV-negative.

The enemy that destroys. Treavor learned that HIV attacks the immune system, skin, bowel, and brain. The immune system fights off germs and prevents people from becoming sick. However, HIV is a sneak and a saboteur. Because the virus mutates, or changes its appearance, so frequently, the immune system doesn't recognize it as an invader. And while HIV escapes notice of the immune system, it also attacks and slowly destroys it. Thus, the body is unaware of the very enemy that is destroying it.

During the first few years after infection, the immune system is able to recognize the changing HIV and protect the infected person. The individual usually remains free of symptoms for five to 12 years. As HIV destroys the immune system, common infections begin to occur with uncommon regularity.

Gradually, common infections become more severe, and the person begins to have unusual infections, ones that occur only when someone's immune system has little defensive fight. These infections take advantage of the opportunity to infect such defenseless people; thus, as Treavor learned, they are called "opportunistic infections." When the immune system is almost entirely destroyed, the patient often has frequent common as well as opportunistic infections and unusual types of cancer.

When HIV attacks the skin, itching is a common symptom, and other skin conditions occur. HIV-involved nerves cause numbness and pain. An HIV-infected brain often manifests as dementia. A bowel infected with HIV may manifest as severe diarrhea and can cause profound weight loss, All of these symptoms result from HIV infection; however, only when the patient's disease meets strict criteria is AIDS diagnosed.

Limited treatments. In his reading, Treavor learned that there are effective treatments for many of the infections associated with HIV, but only limited treatments for HIV itself. Present anti-HIV treatment decreases the symptoms of HIV infection, but the drugs are not curative and do not prevent the transmission of HIV.

He learned that in spite of billions of dollars spent doing intense and wonderfully creative research, a cure for HIV infection and an effective vaccine are not expected in the near future, primarily because the virus changes rapidly into many different strains. Researchers hope that they will develop a cure for HIV infection and an effective vaccine to prevent transmission. There is no proof that present technology can find either. It may be years before science makes these advances.

Transmission. HIV causes AIDS. Many wild rumors and myths speculate about HIV transmission. For 13 years scientists intently studied the transmission of HIV and found that sex (heterosexual and homosexual), IV drug use, transfusion of blood and blood factors, and mother-to-fetal contact are the general ways HIV passes from one person to another. During the past 11 years few exceptions have been documented. These four methods are the transmission route for about 99 percent of all AIDS cases.

Condoms do decrease the risk of unsafe sex; the risk is one-fifth of what it would be without a condom. But condoms do not make unsafe sex safe; they merely decrease the risk. Why do government and public health organizations recommend condoms? Because if all people currently having unsafe sex used condoms, the spread of HIV would decrease. Thus, it is good public health policy. But condoms are risky on the individual level; they offer statistical benefit, but do not guarantee personal safety.

A world issue. Treavor is just one of many lives drastically altered by AIDS. Currently there have been approximately 350,000 cases of active AIDS reported in the United States. Of these, 110,000 are still alive. An additional 1 million cases of HIV infection exist in the United States. Worldwide, about 15 million people are infected with HIV. By the year 2000 there will be more than 50 million HIV infections in the world.

A personal perspective. AIDS obviously is taking a terrible physical toll. But the emotional cost is devastating as well. So while obtaining correct technical information about AIDS is good, it's not enough. AIDS education alone cannot combat apathy and prejudice. These are individual battles we each must face. When we first hear about a person with AIDS, such as Treavor, often our first response is "How did they get it?" as if AIDS from a blood transfusion were somehow "better" than AIDS from sexual contact. We are caught in a trap, seeking to limit our empathy to the "innocent victims." This trap is as deadly to our compassion as AIDS is to our bodies. If we have been protected by a lifestyle without high-risk behaviors, such a way of living was a gift graciously given to us. In gratitude let us discard our judgmental attitudes, replacing them with caring actions. The best way to do this is to become personally involved in caring for people infected with HIV, thus gaining firsthand knowledge about what it's like to have AIDS.

To most, AIDS is an unspeakable horror. Like most people with HIV infection, Treavor guards his terrible secret with fear and trepidation. Greater than his fear of his inescapable disease is his panic lest his church learn of it and he be disgraced. Worse than the anticipation of death is the belief that he will lose all his friends and be alone--disowned by family and ostracized by community, should the truth of his infection be revealed. What he needs the most is love, care, and support. But he is too terrified to acknowledge these needs and seek help. So he suffers in silence and dread.

Beyond the data. People like you, me, and those we love are suffering and dying from AIDS. We must confront our fears and refuse to join the popular panic; we must resolve to become active fighting HIV, not the people.

For some, visiting an AIDS patient, sitting with small children while parents visit the sick one in the hospital, or assisting with errands and meals will be a step in the right direction. Others will heed the call to volunteer as an AIDS caregiver.

Most of us are able to donate blood. Donating blood is a perfectly safe way we can give of ourselves to help people with AIDS. Becoming involved in a local AIDS project or training as an AIDS hot line volunteer are other choices that will help us move from spectators to participants. Involvement will give us a form of knowledge far more valuable than statistics or medical facts: it will give us personal experience and empathy.

Harvey A. Elder, M.D., is a professor of medicine at Loma Linda University School of Medicine and chief of infectious diseases at the Jerry L. Pettis Veterans Administration Medical Center in Loma Linda, California. Cheri Lynn Gregory is an English teacher and writer who lives in Alta Loma, California, with her husband and two children.