Don't call it AIDS

September 27, 1994|By Tom Stoddard

QUIETLY BUT persistently, AIDS has evolved into something quite different from the horrifying, untreatable illness of the early '80s.

It is still a killer, but medical science has made major life-sustaining gains against AIDS-related infections.

Unfortunately, the government has largely ignored these successes. So have the media. Almost every report from the recent international AIDS conference in Yokohama, Japan, communicated despair rather than possibility.

They should start emphasizing the triumphs of science, because the well-being of thousands of people with HIV is at stake.

A good start would be to stop using the term AIDS. In 1981, before the syndrome AIDS even had a name, patients contracted mysterious, exotic conditions like Pneumocystis carinii pneumonia and Mycobacterium avium complex, then they weakened until they died.

Now both these conditions, and many others that afflict those with AIDS, are not only treatable but preventable.

There is, of course, still no cure for AIDS. But in many cases the related infections that actually kill people can be stopped through antibiotics.

I know firsthand. I developed HIV-related pneumonia 22 months ago and I have recovered completely -- well enough to jog two miles without stopping. A decade ago I probably would not have survived for more than a few weeks.

In those days, this pneumonia accounted for the majority of deaths caused by the virus in the United States. Today that number has plunged to less than 3 percent. These heartening medical advances, however, cannot assure that people will no longer die from preventable infections.

In order to avoid acute illness, those infected with the virus must know they have it, be able -- and encouraged -- to find doctors who specialize in AIDS treatment, see those doctors frequently and get medication.

Yet many -- perhaps most -- people with HIV do not know there is any hope. They make no effort because no one has made a concerted effort to tell them the news that treatments are now available.

This was evident in a 1992 study at Howard University Hospital in Washington, which disclosed that 41 percent of the people who died of AIDS in the hospital had never been diagnosed with it. Some of these people undoubtedly died needlessly, not because the hospital gave them inadequate care but because they never came in for treatment.

Why don't people who suspect they might have AIDS visit doctors? In many cases, it is because they don't know there is hope.

The government in its Victorian way tells people to avoid unsafe sex and dirty needles, but it has no informational campaign directed at those who are already infected. Some reporters -- far fewer than five years ago -- cover AIDS, but they rarely report the news that matters.

Two stories have dominated coverage in recent months: the lack of progress in the search for a vaccine and allegations that a dentist in Florida transmitted HIV to some patients. Good news simply isn't reported.

The very term AIDS is part of the problem. It connotes imminent death and despair. People with AIDS are simply written off. The term is not even medically very useful. AIDS cannot be applied to many of the people infected with HIV.

According to the Centers for Disease Control and Prevention, AIDS is diagnosed only if an HIV-positive patient has one of a few specific infections or cancers or a low number of so-called helper cells in his or her blood.

But people who do not meet that definition die of HIV-related ailments, and people who fit the definition -- including me -- can and do survive.

AIDS has outlived its usefulness. To mark the evolution of the illness into a condition that is susceptible to treatment, AIDS should be relabeled "HIV disease."

Such a signal of possibility could save lives.

Tom Stoddard, a lawyer, is on the board of directors of the American Foundation for AIDS research.

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