AIDS: I care..., do you?

Chris W. Green, AIDS activist, Jakarta

That is the slogan accompanying this year's World AIDS Day, which again falls on Dec. 1. Yes, I know it sounds a bit arrogant -- but forgetting that, what does it really mean?

Interesting word, "care". Look it up in the dictionary and you will find it has many different meanings. I guess those who thought up the slogan intended it to mean "I feel concerned about AIDS", or perhaps "I worry about AIDS". I like to think they also hoped we would read it to mean that we were willing to care about and care for people with Acquired Immune Deficiency Syndrome (AIDS).

With 37 million people living with Human Immunodeficiency Virus (HIV) and AIDS around the world, we can no longer just mouth platitudes like "prevention is better than cure" -- particularly when there is no cure. Yes, prevention continues to be very important, but many believe that it can only be effective if it is integrated into care and support for those infected.

Given that HIV, the virus that causes AIDS, can only be spread by those who are already infected, it seems obvious that those who are infected should play a crucial role in the prevention response. But this can only occur if they are aware that they are infected. And because of the stigma and discrimination that a positive diagnosis of HIV infection can bring, few of those who feel they might be infected see any benefit in being tested. They "know" that there is no cure for AIDS, and expect that they will be left to die if it becomes known that they have the disease. Who will care for them?

Until recently, many felt that there was little that could be done for people with AIDS in the developing world. The new treatments that started to become available in America and Europe in the mid 1990s were far too expensive for all but a very small handful of people with AIDS in the developing world. Who could possibly raise the US$15,000 that was needed for one year's supply of drugs -- and do that for life?

But over the last year, a breakthrough has occurred. With competitive pressure from manufacturers of generic drugs in India and Brazil, and strong advocacy from activists around the world, these prices have dropped dramatically. Now, people with AIDS in Indonesia can access this therapy for Rp 120,000 (US$11.5) per month -- and there are hopes that even this cost can be reduced. Already many are starting to take advantage of these low prices -- and more are asking to be tested as a result.

But although HIV can infect both rich and poor, it tends to affect disproportionately those in the bottom layers of society, for whom even such relatively low costs are still out of the question.

For example, we are seeing an explosion of HIV infection among prisoners, primarily as a result of infecting drug use -- a recent survey in a Jakarta prison showed that 17.5 percent were HIV-positive. The prison authorities admit that their budget for healthcare is Rp 700 per prisoner per year, enough only to buy a few aspirin. How could they possibly offer effective treatment to these people? Who cares?

But within one or two years, these prisoners will be released and returned to the community. Will they care about infecting others? Do they even know they are infected, or understand what that means?

Evidence is accumulating that use of the new potent drugs can depress the level of HIV in the body to a level that greatly reduces the likelihood of transmission to others. Given that persuading people to change their risky behavior, while not impossible, is very difficult, offering this therapy can have a significant effect on prevention.

Yesterday I received a call from Joyce Djaelani at the Yayasan Kita drug recovery center in Bogor. They have been asked to take in a young drug user who is showing symptoms of AIDS. The parents have given up and just want him out of the house. Who cares?

Another junkie bites the dust... But, before he dies, the chances are that he'll continue to share needles with others who may not be infected. Caring for him could break that cycle of infection. But where is the hospital willing to accept a current drug user with AIDS?

Few enough are willing to accept people with AIDS, let alone active drug users. I know, there are no easy solutions to this -- anywhere in the world. But who cares?

AIDS and drug use stretch our feelings of humanity to the limit. Many of us find it difficult to empathize with drug users or others whose behavior puts them at risk of HIV infection. But is it not our society that has allowed the conditions to exist in which such behavior occurs -- or even actively promoted them?

If we are to make any impact on the spread of this epidemic, we must care about AIDS -- and care for those infected.