Lack of information a hurdle in HIV/AIDS fight

David Kennedy, Contributor, Jakarta, d_kenn@yahoo.com

In the Papuan town of Merauke, near the Indonesian border with Papua New Guinea, a giant billboard shows a grotesque demon engulfed in hellfire. The caption reads: "Be aware! HIV/AIDS is evil. Send it to hell!"

Papua has the highest rate of HIV/AIDS infection in the country and some experts believe it is heading for a general epidemic. About 5 percent to 10 percent of the 40,000 population of Merauke is thought to be infected. However, the public's awareness of the disease remains very low.

"It's clear that people's basic knowledge of prevention is lacking," says Helen Lorinquier from the medical relief agency Medecin Sans Frontieres (MSF), which has a team of doctors providing free testing and treatment at Merauke's district hospital.

"People even ask us if mosquitoes are transmitting AIDS. But that's not only in Papua. If you talk to people in the street in Jakarta, you find their basic knowledge is also low."

While the recorded numbers of people with HIV/AIDS here is still considered low at about 4,000 cases, the World Health Organization (WHO) estimates the real number to be about 130,000.

The infection is spreading at an alarming rate among intravenous drug users (IDUs) who are showing infection rates of 40 percent to 50 percent in some regions.

This is an issue which the Ministry of Health's AIDS unit is focusing on and work is under way with the police and judiciary to find new ways of dealing with drug users.

"We're aware that the mode of transmission of the disease in the last two years is mainly by IDUs," said Dr. Haikin Rachmat, director of the ministry's subdirectorate for disease control.

"The transmission of new cases in 2003 was about 80 percent due to IDUs."

According to the National AIDS Commission, the epidemic in the country has changed from "low prevalence" to a "concentrated epidemic". The most affected regions are Papua, Jakarta, Riau, Bali and East and West Java. Other provinces approaching the "concentrated epidemic" status include North Sumatra, North Sulawesi and West Kalimantan.

However, it can be misleading to look at HIV/AIDS in the country as purely a problem of drug users or of sex workers in certain regions, as recent media reports would lead us to believe. Experts are skeptical of the official figures as the numbers of people being tested for HIV/AIDS is still extremely low because of the stigma attached to the disease.

"We have no definitive data because there's still reluctance among people to be tested. Much of the data we get is from testing IDUs and commercial sex workers," said Dr. Hudoyo, deputy director of Aksi Stop AIDS, a local organization funded by USAID which provides about US$8 million per year to HIV/AIDS programs.

Aksi Stop AIDS tries to raise awareness of the dangers of HIV/AIDS as well as reaching more people who need treatment.

"We encourage people to come forward for testing, especially as there are now drugs known as Anti Retro Virals (ARVs) that can manage the disease so that AIDS is like any other chronic disease like diabetes."

Cultural and religious taboos are also a problem for NGOs running HIV/AIDS prevention programs but new ways are being found to accommodate the sensitivities of different groups, such as airing television public service announcements after 10 p.m.

"Last year there was a protest from certain vocal religious groups saying this was dangerous for public morality," said Dr. Hudoyo, referring to media campaigns which were stopped following objections that they were promoting promiscuity.

"Now the approach has changed and the former minister for religious affairs, Tarmizi Taher, appears on TV adverts saying you have to be faithful and follow religious teachings -- then the rest of the advert talks about condoms."

Dr. Suharto, head of the National AIDS Commission, believes there is no room for complacency. He is particularly critical of the lack of HIV/AIDS education in schools.

"We are trying to revitalize our national information campaign," he explained, adding that HIV/AIDS prevention modules for schools were agreed in 1997 under Ministerial Decree No. 303/U/1997, but the policy was never implemented.

Local non-governmental organizations are currently trying to fill the gap in information for young people.

"We offer free voluntary counseling and testing for people who feel they may be at risk," said Cecep Junaedi, coordinator of Yayasan Mitra Indonesia's HIV/AIDS prevention program in Jakarta.

"We have limited access to give seminars to school students and usually only talk about condom use in special small sessions after the main talks," he said, adding that television was now playing an important role in providing information on safe sex despite objections from some religious organizations.

"They think that condom promotion means promoting free sex. They have the right to comment but I think that it's because of a lack of information. There needs to be more collaboration between AIDS programs and religious organization."

Dr. Suharto blames a lack of political leadership for the sluggish approach to public information and he is not afraid of appearing partisan in showing his political favorite.

"If Jusuf Kalla (the running mate of Susilo Bambang Yudhoyono) became vice president, we would have good access to the top level of government because he is so motivated on this issue and knows the danger HIV/AIDS poses to the country," he said.

During his term in office as coordinating minister for people's welfare, Jusuf Kalla was active in putting HIV/AIDS back on the political agenda.

Well known for their political satire, dalang (traditional puppet masters) are also being trained to incorporate HIV/AIDS prevention messages into their popular wayang (shadow puppet) shows which travel around villages in Java. These shows have been highly successful in past campaigns promoting family planning.

While they are unlikely to reach distant Merauke, where there is no shadow puppet tradition, clearly something more than scary billboards will be needed.

In the meantime, MSF medical aid workers are concerned about the low numbers coming forward for free drug treatments -- only 70 so far -- either because they are unaware they are infected or because they believe there is no treatment.

The availability of drugs could potentially be a major problem in the country, according to Helene Lorinquier.

Although the government has pledged to subsidize costly ARV drugs for 5,000 patients in 25 hospitals across the country by the end of 2004, she said there was no such provision for other life-saving drugs needed by AIDS patients.

"We are very concerned about the affordability and the availability of drugs in Indonesia. A lot is said about ARVs but let's talk about 'opportunistic infection' drugs. Before taking ARVs patients need those drugs just to stay alive," said Lorinquier, referring to drugs to treat diseases such as tuberculosis and pneumonia which AIDS patients are prone to contract.

Despite this, the government's efforts to make ARV drugs available are likely to encourage more people to come forward for testing.

"The knowledge that ARVs are there and are available and affordable will make a huge difference for all Indonesians and for Indonesia's capacity to deal with HIV/AIDS," said Lorinquier, explaining that evidence that the disease is being treated is an important part of the prevention message.

Only last week about 1,500 new HIV cases were notified to the Ministry of Health by Jakarta hospitals alone. Making all of the necessary drugs available and affordable will be the next step, but there is still some way to go in providing the public with the information they need to understand one of the 21st century's greatest public health challenges.

"To treat people you need to identify them; to identify them you need to ensure they have some basic knowledge. For this you need to first reduce the stigmatization," said Lorinquier.