20 years of AIDS: Discovery, denial and progress

June 5 marks the 20th anniversary of the discovery of the Acquired Immune Deficiency Syndrome (AIDS). The following article is by Jakarta-based health activist Chris W. Green.

JAKARTA (JP): It was in early 1981 that Sandy Ford, a drug technician in the Centers for Disease Control (CDC) in the United States first noticed unusual requests for a special drug used to treat a rare form of pneumonia. This disease was normally only seen in people whose immune system had been damaged, often by cancer treatment. But in these new cases among young men, there was no obvious cause.

After five such cases had been identified in Los Angeles, the CDC decided that a new disease was responsible. Although they had not yet identified the disease or its cause, the CDC issued an official report about it on June 5 1981. The "birth" of what became known as AIDS was announced.

In the 20 years since then, much has changed. We know the cause of the disease: a virus called Human Immunodeficiency Virus. And we know that this disease has killed more than 20 million people, most in developing countries, and has left 36 million infected.

But although we have made amazing progress in treating AIDS, at least for those who can afford it, we have made little progress towards a cure. There are hopes of a vaccine, but this always seems to be seven years away.

Officially, the first AIDS case in Indonesia occurred in 1987. In April of that year, a 44 year-old Dutch tourist in Bali died from AIDS. But there is good evidence that Indonesia was touched by AIDS much earlier, not long after the disease was first identified.

In October 1983, the newsmagazine Tempo reported research done by Dr. Zubairi Djoerban among transvestites in Jakarta. At that time there was no test for HIV -- HIV itself had not been identified -- but blood tests of two of the transvestites showed results that today would support an AIDS diagnosis.

In September 1985, the Minister of Health reported that five cases of AIDS had been found in Bali, although this was refuted by the ministry's Bali office and by the Director General of Communicable Diseases in Jakarta.

A couple of months later, the Minister responded to questions from reporters, saying "in Indonesia, we have not yet found anyone who definitely has AIDS." He added, "as long as we have faith in God, we don't need to worry about this disease." This pious hope has characterized much of our response to AIDS since then.

In April 1986, Tempo reported the death of a 25 year-old mother of three in January of that year at the Jakarta Central Hospital (RSCM). According to Dr. Zubairi, she had probably become infected through the regular blood transfusions she needed to treat a form of anemia. A series of blood tests in September 1985 had confirmed she was infected with the newly identified virus, HIV, and all the symptoms confirmed this.

It is not clear exactly why this case was not reported officially by the government. Most believe that Indonesia had made little preparation to respond to AIDS, and it was feared that the public would panic.

However, little had changed by 1987 when the case in Bali was announced. Some feel that the fact that this was a foreigner made it easier to give the impression that this was still a disease of "decadent Westerners", from which Asians were in some way immune.

What progress has been made in these 20 years? In medical and scientific terms, unprecedented efforts have been made, resulting in significant success. The cause of the infection (the virus, HIV) was found very quickly, and tests to identify the presence of this virus were rapidly made available.

Many are disappointed with slow progress in the search for a cure. But we must be aware that there are few viruses that we can effectively treat, let alone cure. At best, we can sometimes shorten the duration of the disease by a few days. What we can do is to use vaccines to help the body's immune system to do its job of finding and eliminating these invaders.

But for AIDS, this is complicated by the fact that HIV attacks the immune system itself. The immune system tries hard for many years to overcome HIV, but in the end, usually after 10 or more years, it succumbs to the fight. It becomes too weak to fight not only HIV but also other invaders. These then cause what are called opportunistic infections, such as the rare form of pneumonia which prompted the discovery of AIDS.

But we do know how to prevent AIDS -- and we have demonstrated that prevention does work, in a variety of settings from San Francisco to Uganda. One of the main barriers to the success of prevention is the stigma and discrimination which surrounds AIDS -- as a disease which carries so much moral baggage. As a result, people are still afraid of those who are infected. People living with HIV/AIDS are unwilling to talk openly about their infection, and those at risk are afraid to be tested.

We certainly don't want to see banners around Jakarta saying "Dirgahayu HUT AIDS (Happy Birthday AIDS)" in large letters. But the 20th anniversary of the identification of this terrible disease is a good time to remember the millions who have died, and to commit to doing our bit towards turning the tide. Let us hope that in another 20 years, we will be writing the obituary of AIDS.

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