Released the prisoned spirit

Who should be responsible for prisoners with HIV and/or TB, or with drug use problems, after their release from prison? That question has resulted in some heated discussions among my colleagues. One makes the reasonable point that released prisoners are no longer the concern of the corrections service. After release, they are the same as any other members of the community, and should therefore be served by community health centres, hospitals, social welfare services and support groups in the same way as anyone else,

But released prisoners surely do have some special needs. One of my colleagues who spent two drug-use terms in the Kerobokan prison ten years or so back recounts his experience. Before release, he knew exactly what he would do after he got out. But once he actually stood outside the prison gate, his mind became blank. Absent any real alternative, he wandered back to his old haunts, and immediately picked up where he left off - except that he had now lost his tolerance for heroin, and was lucky not to overdose. It wasn't long before he was back in his cell.

There have been a number of studies worldwide showing that adherence to antiretroviral therapy (ART) falls drastically among prisoners after release - if indeed they don't drop out. The same is true for those still taking anti-TB therapy. This is not surprising. Therapy in prison is often effectively directly observed, and adherence is better than that among almost any other group of people taking medications. Enforced discipline is developed. But once outside, they lose this support; the discipline is lost. They have to find a referral clinic, visit it regularly and develop their own ways to ensure that they take their medications on time. Most don't.

Those with a drug problem face even greater challenges. If they've been on methadone in prison, they must find the nearest clinic - surely much more difficult to access than the service in the prison. Chances are that without support they won't bother; just like my colleague, they'll return to their old friends, and the sugesti (craving) will immediately take over. And what about the increasing number addicted to meth?

The parole service in the prison does have the task of attempting to identify such needs before release, and referring the prisoner to appropriate services after they get out. Everybody seems to agree that responsibility after release passes to the Social Welfare Service and/or to NGOs. But the former seems to have very limited if any resources for this, while there are few NGOs working in this field, and fewer still are funded for the work. And it is rare for either to actually work with prisoners before release to ensure continuity.

I'm told that recidivism is low in Indonesia, although probably higher among drug offenders. So this may (or may not) counter the argument that more should be done to reduce re-offense. But surely there is a human rights imperative to help ex-prisoners reintegrate into the community, including ensuring their continued access to appropriate health care. Whose job is it?

Babé

Win us to our harm

Are we winning the 'war on drugs'? "New HIV infections among drug addicts [in Indonesia] have dropped significantly in recent years," Ibu Nafsiah (National AIDS Commission secretary) is quoted as saying in an article (Indonesia's Uphill Fight Against Aids) in the Jakarta Globe. Ibu Naf partly puts this down to the success of the authorities in cracking down on heroin use, as well as the distribution of sterile needles, and increased use of methadone.

Let's start by examining the evidence for Ibu Naf's statement. The data from the MoH seems to support it.



However, we should bear in mind that less than 20% of the almost 400,000 people thought to be living with HIV in Indonesia actually know that they are infected. And reasonably reliable data is available only for the 26,483 who have been reported as diagnosed with AIDS. Can this be considered a representative sample from which we can draw accurate conclusions?

On the other hand, there is anecdotal evidence to support the statement. At a recent meeting Ibu Naf noted that outreach workers were finding it very difficult to find additional injecting drug users.  Yes, it is a 'hidden epidemic', but there has been considerable success in reaching these users in many parts of Java.

Further. we frequently hear that drug users are abandoning injected heroin. Some may indeed be migrating to methadone, although only 2548 clients are accessing this service according to the latest MoH report, More are probably using buprenorphine, which is reported to be quite freely available in many places.

But there is fear that more are probably switching to sabu (as crystal meth is known here). This may reduce the risk of HIV infection, but greatly increases the risk of an addled brain, and there is of course no effective substitution therapy for meth addicts.

So, although the evidence base may be limited, it does seem reasonable to infer less people are injecting heroin. But our ill-fated war on drugs just may be causing more collateral damage.

Babé

Good women standing shoulder to shoulder

Unusually, the Jakarta Post on Wednesday published an opinion article on its front page. Headlined "Taking charge in a transition", it was by Sri Mulyani Indrawati, Managing Director of the World Bank Group and a former finance minister of Indonesia. For some reason (probably copywrong), this article is not accessible on the Post's web site, but I managed to find it at its original location, under the headline "Winning the Transition."

Although having no direct connection with HIV, I commend this article to you for its clarity and simple language - and because I'm sure that Ibu Sri does have an indirect impact on HIV here, an impact which hopefully will increase.

Indonesia is lucky in having many women like Ibu Sri. Another closer to home is our Minister of Health, Ibu Endang R Sedyaningsih. An ex-AIDS activist, she's now attempting the Herculean task of sorting out the culture of her ministry, sullied as it is by alleged corruption by several of her predecessors (not all female leaders can be trusted!).

There's another women making an impact, Ibu Sri Pandam Pulungsih. This Ibu Sri was previously a very caring Medial Services Director at the Infectious Diseases Hospital in Jakarta, and is now a hugely respected WHO manager, working on their response to HIV in Jakarta.

We are lucky to have so many talented and dedicated women in Indonesia. Standing shoulder to shoulder, they give us hope for the future.

Babé

Woman, hard beset

Recent research among inmates in Indonesian prisons has raised a worrying red flag. While HIV prevalence among male inmates was a little over 1%, the figure was 6% among female inmates. The report does not attempt to explain this difference, although it should be noted that random selection of study prisons turned out not to include any of the narcotics prisons, where the rate among men would be expected to be much higher. A further study of these prisons is planned. But at least in theory. these results should reflect the situation in Indonesian prisons in general. Clearly we've got to strive to reduce this high rate of infection among women in prison. Ideas?

Once again, this study does not provide a picture of the incidence of HIV infection in prisons. The conventional wisdom is that HIV is spreading uncontrolled in Indonesian prisons. Redefining AIDS in Asia, the 2008 report by the Commission on AIDS in Asia, notes that "men who had recently arrived in jail were only a quarter as likely to be HIV-infected compared with other prisoners," citing a Health Ministry surveillance report as the source of this data. Perhaps this was the case then, but my gut tells me that it's not true today. Yes, there is still some drug injecting in prisons, and yes there's certainly some unprotected sex occurring.  But the study reports only 0.7% of male respondents and no female respondents had injected while in prison. And given that almost half of both sets of respondents had served less than one year of their current sentence, it does seem unlikely that a significant number had been infected after incarceration. What it does tell us is that we really do need a follow-up study to give us a better picture of the real risks for HIV infection in Indonesian prisons.

There is a good summary of the results available for download, together with the full report.

Babé

Health and wealth have missed me

Some good news for those in prison. The Jakarta Post reports on the signing of a memorandum of understanding (MoU) by the Minister of Justice/Human Rights and the Minister of Health. This makes prison inmates eligible for the government-run health insurance scheme for poor people, known as Jamkesmas.

In the past, it has frequently been difficult for prison staff to arrange free health care for inmates, since they often do not have valid identity cards and have difficulty proving that they are poor (within the meaning of the act). Now, all that will be needed to access hospital services is a recommendation from the prison warden.

Except for "inmates assumed to be rich, like drug abusers," the Post reports the Minister of Justice/Human Rights as saying. Since something like half of prisoners are there for drug offences, this would seem to place a severe limit on eligibility. A similar limitation previously in place in Jakarta excluded the inmates of the Cipinang Narcotics Penitentiary from accessing the free health care which at least in theory was available to other inmates.

The Director-general of Prisons appears to be unaware of this. He is quoted as noting that 90% of prisoners will be included in the scheme. Let's hope the wardens ignore the oft-held assumption that all drug users must be rich to afford their habit.

Babé

Isolated with no before or after

A disturbing interview on NPR yesterday (Questions On Public-Private Prisons For Immigrants) confirmed my impression that the prison system in Indonesia could teach some others a thing or two. We heard about inhumane treatment in a prison in Texas (A Death in Texas). This prison in a remote part of the USA, with 3,700 inmates, has no infirmary! An epileptic prisoner was denied his medication, and locked up in an isolation cell (the "hole"} when he fell sick, because there was nowhere else to put him. He died in the cell.

Read the article. Listen to the program. And thank God that Indonesia is more enlightened.

Babé

All the little birds go tweet, tweet, tweet

Although I've been using the internet since 1995, I'm really not into social networking. Perhaps because I'm basically anti-social? I've never been good at old-fashioned chatting, let alone chatting on the internet. I've on occasion set up both Yahoo Messenger and Facebook accounts, but shut them down within minutes. And tweeting? They're all just not me!

But there's no doubt that Indonesians are really into these forms of social networking. It seems that almost everyone now has a Blackberry. A recent report on the Kompas Daily web site (Penetrasi Internet di Indonesia Naik Dua Kali Lipat) says that 17% of Indonesians are accessing the internet, with a rise of 700% in numbers of Facebook users and 3,700% in Twitter users over the last year. And it notes that most of the users are in the 15-39 year age range.

So what? Well, that age range is clearly that most affected by HIV. But many of those involved with AIDS planning are a bit (or in some cases, more than a bit!) older than that, and probably feel less than comfortable with these new developments.

Some examples: the Spiritia web site hot line received 109 anonymous questions last month. Since we started it in May last year, the Spiritia web site forum has attracted 427 members, who have posted close to 7000 messages. I guess Spiritia staff respond to an average of 3 SMS questions every day. And Spiritia is clearly not alone. An increasing number of NGOs are employing cyber-outreach, particularly for difficult-to-reach gays. Yet it sometimes seems that few program managers are aware of all this activity.

There is an increasing literature regarding AIDS outreach via SMS in Africa. Of course, internet coverage in Africa is currently much lower than in Indonesia. I would suspect there is a great opportunity for develop some cutting-edge ideas using these new tools. Perhaps it's time I re-established my Facebook page...

Babé

Grace under pressure

It's not only acronyms that lose their meaning. Take 'stigma and discrimination'. 'We' often refer to these without really thinking about what they really mean.

I remember back in 1996, when we were planning the first national Candlelight Memorial, we prepared a flier referring to the Indonesian term 'diskriminasi'. I guess that even if you don't understand Indonesian, you can guess what that means. Unless you are Indonesian. Very Kamil, then working with Lentera in Jogja, was in the meeting and asked the meaning of the term (I think he knew, but ...).

Although I'm not an etymologist, it always seems to me that, if a word for the concept does not exist in the language, chances are the concept does not exist in the country. After all, you need a word to describe the concept. And this is especially true for discrimination. In a feudal society (like that in many parts of Indonesia), you don't know you have rights, let alone what those rights are. So how can you talk of violations of rights?

Anyway, in the end we responded to Very's concern (as we still do) by adding in parentheses 'perlakuan yang tidak adil (unjust treatment)'.

Most HIV-infected people in Indonesia (and their families) have experienced discrimination. In my experience, it has usually been caused by lack of knowledge or understanding about HIV, and fear of infection resulting from lack of awareness of how HIV is transmitted (and not transmitted). Of course there are people who are just plain nasty, taking a moral (and often hypocritical) stance. But in my experience this is relatively rare in Indonesia. More often what is seen as discrimination against people with HIV in the health care settings is in fact the endemic discrimination faced by the poor. Those with money rarely face discrimination.

Stigma is more difficult. Again, there's no Indonesian translation, although we often refer to 'cap buruk (nasty mark)'. Actually 'cap' is perhaps more often understood to be the mark made by a rubber stamp (or a finger print). Indeed, recently infected people often feel like there is mark saying 'HIV' on their forehead. And this is indicative that self-stigmatization is at least a significant part of the problem.

All this came to mind at a meeting of the STOP TB Partnership Forum yesterday at which Care International presented outcomes of their TB program in parts of Banten (the province in Java west of Jakarta). In surveying community attitudes to TB, they changed the question on stigma to refer to 'social pressure'. I'm sure we could argue over the term for ever, but at least this caused me once again to think about what we really do mean by this term that we so often use without thinking.

Babé

Grind in the prison house

"Don't worry about injecting drug use here. Indonesian kids wouldn't do that; they're good kids. And anyway, they're scared of needles." So went the conventional wisdom in the mid 90's, when I was working with the Pelita Ilmu Foundation. Pelita Ilmu started life doing outreach to schools, so they should know, right?

As we all now know, wrong! And I should have known better. When I used to hang out with kids in Jakarta in the early 70's, sometimes they'd say: "Watch out for him; he's a morphinist!" That was the 'in' term for a 'junkie' then, but they didn't actually use morphine. Dr. Erwin Widjojo, who set up the Drug Dependency Hospital (RSKO) in Jakarta around that time, tells me it was heroin they were using then. Not injecting; if they wanted an extra-fast high, they would slice the skin on their forearms with a razor, and rub the heroin into the wound. I still sometimes meet users from that period. Mostly they wear long-sleeved shirts to cover the scars.

Anyway, I bought that 'wisdom' right up to 1998, when by chance I sat in on a meeting at the Kusuma Buana Foundation. They were working with slum kids in Warakas in north Jakarta. The meeting was reviewing the program, assisted by Prof. Irwanto of the Atma Jaya University. I was shocked out of a reverie when Irwanto talked about some of the kids there injecting drugs. I visited the place, and found he was right. They apparently used the wasteland under the elevated toll road that borders the area. Dug some more, found out that there were others who were also concerned, such as George Loth of UNAIDS and of course David and Joyce Gordon.

To cut a long story short, several of us got together, with support from Project Concern International, to hold a seminar/workshop on responding to drug problems (but actually on harm reduction, although we hadn't started to use that term then). This five-day meeting in September 1999 involved several experts, including Nick Crofts, Dave Burrows, and Palani, who went on to help us build the foundations of the harm reduction response here.

Of course, a meeting of this nature cost a lot, and there was no funding available then for such controversial activities. So I was tasked to visit Australia to drum up some money. Obviously the prime target was AusAID, who was already running an HIV program here. In Canberra, I tried to persuade them that there was an urgent need to add drugs to this program. They were polite, but didn't seem to offer much hope. I talked to Nick in Melbourne; he put me in touch with Alex Wodak in Sydney, who put me in touch with a retired Australian ambassador to the region. I met him for coffee on a Saturday morning, the last day of my trip. He understood the need, partly because he'd already seen the effects, and also because (if memory serves me) he had a family member with a drug problem. He promised to use whatever contacts he still had in AusAID to lobby for support.

Those contacts must have been influential. On the following Monday morning, back in Indonesia, I received a call from the local AusAID head, telling me that Canberra had allocated 300,000 Australian dollars to the HIV program to be used for the response to drugs in Indonesia. Funding of our meeting was to be the first priority. As you can imagine, we were over the moon.

I'm reminded of this ten years later as I try to drum up interest in the health care challenges in the prisons here. The current AusAID-funded HIV program (HCPI) is doing a fantastic job responding to HIV in the prisons in Java and Bali, as did the earlier USAID-funded program. I'm sure the new Global Fund Round 8 and 9 programs will build upon this. But although HIV is a major problem in the prisons, the health care challenges are much broader and entrenched. Over-crowding, with many prisons at 300% over-capacity, limited funding (a health care budget of less than $50 per prisoner per year), poor sanitation, limited water supplies, a sporadic drug supply system, and limited human resources (some prisons are dependent upon doctors in local health centres) are only a few of the problems.

The prisons department, both at national level and locally, are clearly determined and striving to address this challenge. But they need much more help - and unlike some in Indonesia, they are very open to assistance from anyone who has the expertise and is willing to help. But who is willing to put up the cash? Any ideas? Do I need to make another trip to Australia with cap in hand?

Babé

Pore benighted 'eathen

It was back in September 1995 that I first learned that condoms have pores. The report in the Republika daily, that condoms have holes 1/10 micron in diameter (whereas HIV is only 1/600 micron) must be correct because it was written by a professor: Prof. DR H. Dadang Hawari. Even more so, since the byline noted that the article was a result of cooperation between the daily and the Indonesian Medical Association (IDI). Who could possibly doubt it?

Of course, since then I have learned that Prof Dadang is typical example of our faith-based, rather than evidence-based, academics. And even IDI felt it must respond. So they arranged a debate on condoms, exactly 14 years ago today. This was held in the medical faculty of the prestigious University of Indonesia, and I was there. Prof Dadang was due to speak, presumably on the 'side of the angels.' However, he pulled out at the last moment, as he as always done when called upon to defend his position. So the debate went ahead, one-sided, without him. As I recall, it was one of my first experiences of us preaching to the choir.

The challenge of 'pored' condoms has since come up, it seems, at least once a year. On each occasion, 'we' tell each other 'we' must do something, that 'we' must address this once and for all. But since 'we' usually means 'someone else', nothing changes.

At least that was until this year. Now it's just gotten worse! I've just read in the Jakarta Post (Students told to nip bad habits in the bud) about a young high-school student who has become 'one of the 92 ambassadors of the Jakarta Stop AIDS campaign.' At 15 schools he has visited, he has told fellow students that "there is still a risk of contracting AIDS through the use of condoms because they have pores through which the virus can pass,” He says he learned what the Post rightly calls this 'scaremongering information' at a workshop organized by Unilever and Yayasan Cinta Anak Bangsa (an NGO doing outreach on drugs to youth), and 'based on material from the National AIDS Commission.'

The one bit of good news is that the Post knows better, "According to the WHO, laboratory studies have found that viruses (including HIV) do not pass through intact latex condoms even when they are stretched or stressed," it states. At least we've made a little progress with some of members of the mass media.

Babé

Walk...toward the unknown region

Pace ASEAN, I've always found the idea that there is some essential similarity between the Khmer and the Acehnese, or between the Karen and the Moro, somewhat questionable. It's like the concept of 'Asian values', which is often adduced but rarely defined. And if there is really little in common between all of the countries of Southeast Asia, how much less among the Asia-Pacific?

I therefore tend to question the value of regional groupings and responses. Almost every month we get requests to identify candidates to attend regional trainings, seminars, and workshops, for some reason almost always held in Bangkok. Since the medium of instruction is always English, the prime qualification is a degree of fluency in that language, a skill which is quite rare in Indonesia, and (I imagine) in several other countries in the region. In contrast to some others, at least Indonesia uses a Roman script.

In addition, the instructors or presenters usually come from outside the region, often with little understanding of the situation in the various countries, and speaking in a way that may be difficult for even those relatively accomplished in English to understand.

This has been brought to mind recently by a UNAIDS-organized "Joint capacity building workshop on TB/HIV and advocacy for networks of people who use drugs and their support organization", for injecting drug users from the region. This two-day workshop was recently held in Bangkok, and one of my colleagues has just returned from it. There appeared to be a huge gap between the level of knowledge of TB among participants from different countries. Most of the first day was apparently spent in reviewing the basics of TB. Although this was clearly needed by participants from some countries, for those from Indonesia this was 'old hat, since all had already attended training on this at home. In addition, I wonder how much similarity there is between advocacy in Indonesia and (say) Vietnam?

In the early days of Spiritia, we organised trainings and meetings at a national level. But as the number of those affected increased, we identified that this was not a cost effective approach. Arranging a national training for 20 people costs around $12,000, but with that amount we can arrange around six local trainings covering a total of more than 100 people. No doubt there are some networking benefits from a national meeting, but I think these are often over-stated.

Surely it is time for a similar approach to be applied to these regional meetings. For the same amount of money, it would probably be possible to arrange a series of similar meetings in each country in the region. And rather than "importing' speakers, these could use local trainers, people who understand local conditions and speak the local language. In this way we could choose participants based upon there real qualifications, not primarily on their English skills.

Babé

Hope for the best...

...and trust in God?

As I've noted before, we're all waiting (with more or less patience) for a cure. But is that realistic? We're often told that Islam teaches that God will provide a cure for any sickness that He inflicts upon us. Leaving open the question of why He would so inflict us, I think this statement requires a large dose of faith. There's a whole bunch of 'old' conditions for which there is still no cure.

I am often asked how long it will be before there is a cure for HIV infection. How should I respond? My 'hero'. Prof. Joel Gallant of Johns-Hopkins, often gets taken to task for the realism of his responses to such questions - see Cure. I myself believe that it is highly unlikely that I will see a cure, but then I'm quite elderly. Should I respond so directly, or offer what I see as unrealistic hope?

Dr. Fauci, head of the National Institute of Allergy and Infectious Diseases (NAID) maintains that we already have a 'functional cure', in that currently available therapy can offer HIV-infected people the hope of dying of old age (or more likely other conditions, given the less than healthy lifestyle of many such people here). Is that enough? Not really, since it still requires taking potentially toxic drugs for life, and does not guarantee non-infectiousness.

The search for a cure is still needed. But like the search for a vaccine, our hope must be tempered by realism...

Babé

Preaching to the converted

When I was a lad attending Tech College in Chelmsford, in Essex in eastern England, I lodged at a hostel right next to a church. I still remember how my Sunday morning hung-over sleep was interrupted by the peel of the bells from the church, calling the faithful to prayer. I was reminded of that as I was on my morning walk today, this time around the Lubang Buaya monument to the generals slain in 1965 during the so-called communist uprising. (The paths on my preferred walk would be very muddy following heavy rain yesterday.) It being Idul Adha (the Muslim Festival of the Sacrifice), the many mosques in the area were at full blast, and my ears were assaulted from all sides.

The letters pages of the Jakarta Post have long been bombarded by complaints about this, with comments reaching a crescendo after the reports that Cairo is taking steps to address this babel (One voice for Cairo's call to prayer). What seems to be clear is that several mosques appear to compete on the volume, rather than the quality, of their muezzin's call. The result is an often ear-splitting cacophony, which almost certainly exceeds the limit that can cause lasting ear damage.

Why do I bring this up? Because we in the AIDS community tend to act in the same way. We compete with each other on the volume of our shouts, rather than on their quality. We preach to the converted, just like the mosques, particularly in our increasingly shrill exchanges in our mail lists and forums. And, like the mosques, it all rises to a peak on specific days. At this time of year, our fax machine runs out of paper with all the invitations to events. If we attend, we'll find the participants are primarily 'same old, same old.' And many organizers will also be asking for us to arrange a 'rent-a-PLHIV' to present 'testimony' at the event. (My friend Wahyu says that his price for testimony is three million rupiah, but he's free if invited as a speaker.)

Happy World AIDS Day!

Babé

and I don't care

I'm sure we all frequently use acronyms and abbreviations without thought as to their underlying meaning. One example that always sticks in my craw is 'WTS' (wanita tunasusila, or women without morals), a euphemism for sex workers. While some are quite likely 'amoral', no more than members of the general population, and many that I have met are more moral than me (OK, not saying much!). It's an extremely judgmental, inappropriate and unempowering term. Yet it's still used by the Social Welfare Ministry, where there is a subdirectorate providing social rehabilitation service for those without morals (Subdit Yanrehsos Tuna Susila). Sadly I can't tell you much more about it, because the web page for this subdirectorate only displays 'Lorem ipsum dolor sit amet, consectetur...". But I have refused to attend activities of the Ministry until they change the name.

Today, another example came my way, although raising very different concerns. 'CST' is increasingly used for Care Support and Treatment (mainly for HIV-infected people or PLHIV) and this English abbreviation is often used even in Indonesian. In fact, the report I was listening to, while frequently referring to CST, in fact focused almost exclusively on treatment, with little concern for care and support.

We have frequently emphasised that provision of antiretroviral therapy (ART), while important, is by no means the only need of PLHIV. For example, we have still made little progress in retaining PLHIV in care, especially those who have yet to meet the criteria for starting ART. The result is that, even if we manage to identify infections at an earlier stage, the PLHIV concerned will rarely return for follow-up until he or she falls sick with a serious opportunistic infection, and with an immune system that is already shot. In addition, as Dr. Chavelit pointed out in the meeting, we almost totally ignore palliative care.

Fact is, as my colleague Dr. Hendra recently pointed out to me, while we've made a degree of progress in provision of treatment, and Spiritia and partners are doing a reasonable job of support, we've made almost no progress on care. Those who are normally the main providers of care, nurses, are often viewed as skivvies (a menial for those from the ex-colonies), and frequently lack caring skills.

Clearly changing this requires a very long-term effort, but at least we could start to acknowledge the need, and avoid lumping this important activity with the other two.

Babé

PS A Happy Thanksgiving to all (two?) of my US readers. As you probably know, the English celebrate thanksgiving on 4th July (grin!)

Water buffaloes, neurasthenic

Dr Ronald's report predicting five million cases of HIV infection next year (Figures don't lie... (cont)) referred (as many such reports do) to the iceberg phenomenon. We often used to hear that for every case found, 'the WHO calculated' that there were 100 or 1000 (choose your figure) others that made up the unseen part of the iceberg under the water. I'm doubtful the WHO ever made such an assertion, but it became an urban myth.

Ignoring the figures (and the fact that icebergs are quite rare in the tropics), the metaphor of the tip and the submerged part is in fact totally inappropriate. The problem with it is that the full size of an iceberg never becomes apparent. As the ice melts, the iceberg gets smaller (never larger, like an epidemic), but the ratio of tip to submerged part remains the same. Thus the metaphor suggests that, as more and more cases are identified, so there are more and more cases unidentified.

With improved surveillance (active or passive), the proportion of unidentified cases is reduced. Epidemiologists then say that the size of the submerged portion decreases compared to the tip (see iceberg phenomenon). This is clearly wrong-headed, since such can never happen to an iceberg. And this wrong-headedness leads the press (and activists who should know better) to scream about an exploding epidemic each time the number of identified cases goes up.

I was reminded of this during my morning walk around the small farms at the back of the Halim airbase (the Sunter Valley is not quite as attractive as the Thames Valley, but this morning's walk was pleasant, with clear views of Mount Gede and Mount Salak to the south). I pass a number of muddy pools, and as usual this morning, several water buffaloes were enjoying their morning bath.

Some time ago, Doc Suharto (late of the Education Department and the National AIDS Commission) proposed this as a replacement metaphor for the AIDS epidemic in Indonesia. We first see only the buffalo's snout above the water, and we have no idea if it is a small baby or a large adult. But slowly the beast raises itself out of the mud, and its size starts to become apparent, until finally we can see its full extent.

This clearly provides a much more appropriate metaphor, besides being easier for people here to understand. At the start of the epidemic. the buffalo is small, but as time passes grows larger. But as surveillance improves, the buffalo heaves itself out of the mud, and we begin to appreciate its full extent.

Wonder if there's any hope of getting epidemiologists to change their metaphor?

Babé

Figures don't lie... (cont)

How many HIV-infected people are there in Indonesia? The general consensus among the experts is around 300,000. I have noted before that Malaysia, with one tenth of the population of Indonesia, had identified around 70,000 cases of HIV infection. It thus seems reasonable to guess (as a non-expert) that Indonesia had at least 350,000 cases.

Now we have another expert, our friend Dr. Ronald Jonathan, quoted suggesting that by next year, there will be five million (yes, six zeros!) cases by next year, in only 300 of the almost 500 districts in Indonesia (Five million HIV/AIDS cases in Indonesia by 2010). Interestingly, only an English-language version of the report appears on the Antara web site.

I've just talked to Dr. Ronald. He tells me that he was presenting figures of worst-case scenarios from several years back. He was not at the time aware that the Antara reporter was present, but when he was later interviewed, he corrected the reporter's mis-impression, and requested that it not be published. Seems Antara ignored this, and the report was picked up and published in the Jakarta Post yesterday.

On the other hand, at a meeting a few days back, I heard that a new 'official' estimate is being prepared, which may end up suggesting even an even lower figure than the 300,000. Sadly, the surveillance efforts here are very limited, very infrequent, and with questionable samples. So the fact is that we have little idea if it's 200,000 or two million.

Babé

My actions are my ministers

The furore over the appointment of Endang R. Sedyaningsih as Minister of Health seems to have died down a little. I think that to most of us in the AIDS world her appointment is very welcome news. Five years of a xenophobic minister, who declined to talk of harm reduction at a cabinet meeting on AIDS apparently because she didn't know what it was, have done little to enhance the response to HIV in Indonesia.

Mbak Endang was one of the earliest Indonesian AIDS activists. Back in 1996, she collaborated with Pandu Riono to set up the first Indonesian-language AIDS mail list, AIDS-INA. I ran into her at many meetings in the late 90's, and she was always pressing for a broad-based response.

Many have probably forgotten that Ibu Endang was among the earliest supporters of the concept of harm reduction. It was back in December 1999 that she published an op-ed article "AIDS di Indonesia: Ke Mana (AIDS in Indonesia: Going Where?)" on this in the Kompas Daily. In the article, she noted:

One group with high risk behaviour is injecting drug users (IDU), whose numbers continue to increase. Anecdotal data that we are starting to collect indicate a yellow signal to the developing spread of HIV/AIDS in this group (three HIV positive from 35 young people in a rehab program, 3% of the total of drug users under treatment). Sharing needles is customary among this group. Actually this behaviour is a very effective way to spread HIV. As a result, we expect that the number of cases of HIV/AIDS among IDU will jump exponentially in the near future. In anticipation of this, perhaps it is time to consider unconventional efforts to reduce risk, such as providing sterile needles and teaching sterilization of needles (my translation).

Remember, this was ten years ago, when even the WHO was doubtful that an IDU-driven epidemic in Indonesia was likely, when the concept of harm reduction was far from acceptance even among the experts, and needle exchange was a taboo subject in most of the world.

Welcome, Ibu Endang!

Babé

Powerful amidst peers

I think I've mentioned before that I've been working with the AusAID-funded HIV Cooperation Program for Indonesia (HCPI) on the response to HIV in the prison system in Java and Bali. One focus has been to support the 2005-2009 National Strategy on HIV in Prisons in Indonesia, which (among other elements) called for "Creating peer network as form of support and care for HIV positive among prisoners/detainee."

Dhayan, one of my colleagues in Spiritia (and an HIV-infected ex-prisoner), has been working with me on this. Together we have visited ten prisons, meeting with staff and prisoners, including many who know that they are HIV-infected. The aim has been to look into how peer support groups can be formed and developed in this environment, and to prepare a manual to assist in this process. In fact, we found that support groups had already been formed in around half of the prisons we visited. This helped us to validate our ideas, and provided useful input.

At one of the prisons, Banceuy Narcotics Prison in Bandung, we found the process was very well advanced. Partly this was due to the very strong support from the prison governor, Pak Ilham, who earlier got his 'baptism' in responding to HIV as governor of the Kerobokan prison in Bali. This prison was one of the first in Indonesia to identity HIV as a problem. Pak Ilham has now used this experience to nurture a really supportive and caring regime in Banceuy.

During our last visit to Banceuy, aimed at reviewing the draft manual, we noted that much of what was being achieved in responding to HIV in Indonesian prisons was not well appreciated, even in Indonesia, let alone among the international community. We suggested to Pak Ilham that he might encourage reporting by the media, particularly referring to the Jakarta Post, the foremost English-language daily in Indonesia.

Don't know if this was the cause, but a few days back, we were very pleased to see an article 'Penitentiary to establish peer group for inmates' in the Post. The name of the support group there is 'Banodis', standing for 'Banceuy No Discrimination', and members of the group do indeed report that discrimination is extremely rare in that prison.

I've noted before, that despite facing huge challenges, the Indonesian prison authorities are dedicated to developing cutting-edge solutions. Peer support is only one of these.

Babé

Sweet retired solitude

Some of you may be aware that, since 30th September, I've given up full-time work with Spiritia. I'm still doing occasional work as a volunteer, particularly to maintain the web site. I'm also continuing to work for with the AusAID-funded HIV Cooperation Program for Indonesia (HCPI) as a consultant, at least until the end of the year. Hopefully there will opportunities to continue this next year.

However, I do intend to spend more time in the UK. I had a really enjoyable couple of weeks there in September, partly staying with my sister between Reading and Newbury, but also spending four days hiking in Exmoor. During that time, I hardly saw a soul all day - a very pleasant change from the wall-to-wall people here. There's so much of the British Isles I've always wanted to visit, so I plan to start to address this starting next Spring.

Meanwhile, I'm spending much of my time with the prisons. I'll write more about this tomorrow. There's still plenty of time for more adventures. And hopefully I'll have more time to write...

Babé

Good bye, Uncle Bob!

Sadly another loss to report, this time not directly caused by HIV. Bob Monkhouse, known to his friends and many, many 'children' as Uncle Bob, died early this week in Bali.

Bob had been in Indonesia since at least the mid 1970's. At some stage he opened a bar (I think it was the Pink Panther) in Kuta. I'm sure he'll forgive me for noting that, like many in that situation, he became too fond of his own wares. The upshot was that he formed an Alcoholics Anonymous group in Bali. This group continues to meet.

In the late 90's, it was natural that he should feel drawn to respond more directly to addiction. His first approach was to form the Bali Health Foundation (Yayasan Kesehatan Bali, or Yakeba as it soon became known). Yakeba set up a rehab centre for addicts in Denpasar. With growing demand, this was moved to some cottages in a lovely spot in the Balien valley, near Tabanan. Rosy, one of the early residents, remembers it as being very free, with no doors. Uncle Bob was always quick to forgive the inevitable thieves.

As news of HIV among drug users started to spread, Bob decided this demanded action. But like most of us at that time, he was no well informed about HIV, and felt the best approach was to get all the eighteen residents at the rehab centre tested. The results arrived on New Year's Day 2001: eight were positive! Rosy was one of those who received this terrible New Year's present; she recalls that they all had no idea what that meant, just that they would probably die within days or weeks.

Bob searched for help in responding. Fortunately, he quickly contacted the AusAID-funded HIV program (IHPCP) in Bali. At that stage, the extent of the HIV epidemic among injecting drug users (IDU) in Indonesia was only just beginning to become apparent, but the news from Yakeba was a real shock. By chance, I happened to be visiting the IHPCP office on 3rd January 2001, and was invited into a meeting with Bob (I think Rosy was also there), to try to decide what to do. One upshot was to arrange for them to meet with Suzana Murni, the founder of Spiritia. Meeting with a 'peer' who had been living with HIV since 1995, greatly assisted them to come to terms with their infection.

As a result, it was natural that the eight should form a peer support group in Yakeba. This group, now known as Hidup ('life', but also playing on the abbreviation IDU) still continues to support many people infected with HIV through drug use in Bali.

As the extent of the drug-driven HIV epidemic in Bali became more apparent, Bob expanded Yakeba's activities. Surveillance in the Kerobokan prison identified a huge problem there, so outreach to addicts in that prison was an early activity. As a result of these efforts by Yakeba and other groups, stigma and discrimination against those with HIV in that prison was pretty much eradicated by mid 2004.

This was followed by outreach to schools, and the initiation of a harm reduction program in 2003. When the methadone program trial was started in the Sanglah hospital, Yakeba took on the task of finding the first clients. Later, Yakeba also started a program of outreach to gays in Kuta.

Rosy remembers Uncle Bob as having a kind heart, willing to help anybody. While not being 'religious', he had strong spiritual convictions, with a deep trust in God.

"Uncle was our father," Rosy told me yesterday. "He gave us dignity."

Uncle Bob, you deserve your rest. Give us strength to carry on your legacy.

Babé

PS. Please respond if you have your own memories of Uncle Bob, or corrections to my fading memories.

PPS. There is an obit of Bob on the BaliDiscovery web site <Bob Monkhouse, 1941-2009> which provides a little more history.