Feb 24, 2018 Last Updated 11:17 PM, Feb 21, 2018

Caring for people with AIDS

Published: Jul 15, 2007


Chris W Green

Yuni was diagnosed HIV-positive in 1997. In 2002, she suffered a severe bout of pneumonia. After three months in hospital, during which time she nearly died, she finally started treatment. ‘Within one week I had left hospital,’ she recalls. Yuni now plays a crucial role as an HIV activist.

In Indonesia, people often believe that AIDS cannot be treated. Not true. While HIV, or human immuno-deficiency virus, the virus that causes AIDS, cannot yet be cured, it can be treated. The drugs now available mean that HIV infection is no longer fatal but merely a chronic condition like diabetes or heart disease. As with these diseases, the drugs that suppress viral reproduction must be taken for life.

The few in Indonesia who know about this treatment also believe that the drugs are very expensive. People living with HIV/AIDS, or PLWHAs for short, often express to me their despair about the price they assume such drugs will cost. This is indeed true in the developed world. People in America or Australia are treated with brand name drugs, which cost over US$ 15,000 per year. Happily, however, for PLWHAs in the developing world, generic versions of these drugs are now available. These cost just one per cent of the brand name drugs used in richer parts of the world.

But even at US$ 150 per year, it would cost almost one billion dollars per annum just to provide drugs to the six million PLWHA globally who urgently require treatment. Without such treatment, most of these people will die within the next few years. Few of the estimated 40 million PLWHA around the world will survive for more than 12 years. To allow such a mortality rate for a treatable disease would be unconscionable.

Dr Lee Jong-wook, Director-General of the World Health Organization (WHO) agrees. On World AIDS Day (1 December) in 2003, Dr Lee, together with Dr Peter Piot, Director of the Joint UN Programme on HIV/AIDS (UNAIDS), announced an initiative to address this challenge. With the snappy slogan ‘3 by 5’, the initiative aims to provide AIDS treatment to three million PLWHA by the end of 2005. Though an ultimate goal is universal coverage, the objective of ‘3 by 5’ was to quickly provide treatment to half of those in most desperate need.

The Indonesian response

Prior to this announcement, fewer that 1500 people in Indonesia were receiving treatment. A buyers’ club imported generic drugs from India, offering treatment at around US$ 70 per month. Clearly, this price was unaffordable to most PLWHA. However, Spiritia, an NGO working in HIV treatment and care in Jakarta, on behalf of the Indonesian peer support network for PLWHA, set up a small-scale assistance program. Largely financed by private donations from Australia, this fund was primarily directed at keeping key activists alive. The first to benefit from this program was Yuni. Yuni now works at Spiritia as a peer support program coordinator.

The HIV epidemic in Indonesia has not yet reached the dimensions of that in sub-Saharan Africa. In countries such as Botswana and Swaziland, for example, infection rates are as high as 40 per cent. In Indonesia, the disease is still characterised as ‘concentrated’, with relatively high prevalence in places like Papua, and among specific groups, primarily transsexuals and those injecting drugs. The Department of Health estimates that around 150,000 Indonesians are infected with HIV. But this estimate assumes 160,000 injecting drug users (IDUs) nationally, with 25 per cent of those users infected with HIV. Many activists believe that both of these figures should be doubled.

To address this challenge, the government quickly bought in to the ‘3 by 5’ initiative. Early in 2004, the Department of Health announced a target of treating 10,000 PLWHA by 2005. In line with WHO objectives, this represents around half of those estimated to need urgent treatment.

To support this objective, a government-owned pharmaceutical company started producing generic versions of the three main anti-HIV drugs, at a monthly cost of around US$ 40. The initial plan was that these would be provided with a 50 per cent subsidy to around 5000 people.

However, after lobbying from community members, the plan was changed to provide the drugs at full subsidy. For most PLWHA in Indonesia, even US$ 20 per month is unaffordable, and such shared payment would have been a heavy burden. In addition, the cost to administer the subsidy would be almost as much as would be saved.

Social stigma

One of the key challenges facing treatment educators in Indonesia is the social stigma associated with a diagnosis of HIV infection. This stigma discourages people from actively seeking testing: it is estimated that less than 10 per cent of those thought to be infected are actually aware of it. This is exacerbated by the fact that centres which are able to provide HIV testing are still few and far between in much of Indonesia. Few of these testing centres are user-friendly, and most charge fees. There has also been very little public promotion of voluntary testing, so it is difficult for people to find out how to access these services. People have to really want to get tested; few are willing to overcome these barriers.

Another challenge is the availability of quality counselling, both before the test, and after the results are made available. Such counselling is time-intensive, and requires well-trained counsellors who can be trusted to maintain confidentiality.

Yuni’s experience is still a relatively common one today: ‘I was lucky that I was diagnosed early.’ However, she explains ‘[o]thers knew the result before me, and I experienced terrible discrimination’. Unfortunately, this still occurs, and discourages people from testing.

Scaling up

It is difficult to know how many people are currently receiving treatment. The best estimates suggest that by mid-2005, around 2500 PLWHA were receiving the drugs. It is clear that Indonesia will not achieve its ambitious target of treating 10,000 PLWHA by 2005. While the drugs are available, the relatively low levels of diagnosis present an immense challenge.

To find the additional 7500 who need treatment in line with the target, the Department of Health estimates that half a million people need to be tested, requiring the full-time employment of 2500 counsellors. Currently there are probably less than 100 active counsellors throughout the country. Of the half a million people tested, 50,000 may turn out to be infected. Many will require peer support, yet there are now less than 60 peer support groups in Indonesia. Most of these are under funded, or indeed unfunded. How can we support the several hundred new groups needed?

In parallel with voluntary counselling and testing, medical services must also be scaled up. Currently the government has only designated 25 hospitals to receive AIDS referrals in Indonesia, in 17 of the 33 provinces. The Department of Health plans to add another 50 this year, with at least one in each province. This requires a massive effort to train doctors and other healthcare professionals. Considering that approximately 500 of those needing treatment are infants, treatment in such cases requires additional expertise and the involvement of specially- trained paediatricians.

Adherence is crucial

But increasing medical services may be the easy part. HIV is a very tricky virus. It easily mutates to become resistant to the drugs used to suppress it. Like tuberculosis, resistant versions can become dominant in the population. Indeed, this is already occurring in the developed world, including Australia. Treating a resistant virus is more complex and needs much more expensive drugs that are not yet available or affordable in Indonesia.

To avoid development of resistance, those on treatment must follow their regime strictly. They must take highly toxic drugs usually twice a day, and maintain high compliance levels. And they must do this for life. How many of us, after being told we must complete a prescribed course of antibiotics, have not found several left over after the five days? AIDS drugs must be taken for perhaps 50 years, considering most of those starting treatment are still young.

To achieve such high levels of compliance among such a large population for so long is unprecedented. Perhaps the most effective means of achieving this is peer support: sharing and encouragement by others who are already successfully taking the drugs. Many doctors in Indonesia have now accepted the need for peer support as a means of assisting the treatment of those infected with HIV. The ball is now in the HIV activists’ court to identify peer educators, train them in treatment literacy, and obtain funding so that they can work and have an income.

High levels of compliance are possible. ‘I have missed only one dose in more than three years,’ Yuni proudly records. Active drug users face obvious challenges in achieving such adherence success. As a result, some feel that active users should not be offered treatment. However, with appropriate support, users can be adherent, and can benefit from treatment. This benefit can also provide incentive to stop drug use and stay clean.

Have we succeeded?

The ‘3 by 5’ targets will not be met, either globally or in Indonesia. Such an initiative in response to a chronic infection has never before been attempted and the target was probably over-optimistic. Nonetheless, this effort has provided hope to many like Yuni who were resigned to a short life. In addition, community involvement has given meaning to many young lives. It has provided impetus and direction to demonstrate that the target of universal treatment for AIDS is achievable, perhaps not next year or in 2007, but at least before the end of the decade.

Chris W Green (chrisg@rad.net.id) is a treatment educator at the Jakarta-based Spiritia Foundation.

Inside Indonesia 85: Jan-Mar 2006

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