"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
Sunday, 6 December 2009
Wednesday, 2 December 2009
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
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
Sunday, 29 November 2009
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
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
Saturday, 28 November 2009
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
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
Friday, 27 November 2009
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
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
Thursday, 26 November 2009
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!)
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!)
Saturday, 21 November 2009
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
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
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