Yesterday, I mentioned that the second half of my week was taken up with prisons. Actually, I was lucky enough to attend a workshop on scaling up the response to HIV in prisons in Java and Bali. The workshop was organized by the Department of Justice and Human Rights (Depkumham in its Indonesian acronym; a combination which often causes a snigger, but in my experience makes good sense). Invited were some 50 prison governors plus the heads of the provincial offices in charge of prisons in each of the seven provinces of Java and Bali.
The meeting started with a review of the Master Plan for Strengthening and Providing Clinical Services Related to HIV and AIDS in Prisons 2007-2010. This provides for 22 prisons in Java and Bali to offer basic HIV counselling and treatment, while a further seven will provide comprehensive HIV services, including provision of antiretroviral therapy, effectively to become provincial centres of excellence on treatment of HIV-infected detainees. And a further eight prisons will also provide methadone, adding to the existing eight, with intention to further increase this number.
I find the provision of methadone in prisons interesting. It seems to me that the only justification for this 'harm reduction' activity is to reduce the risk of HIV infection from sharing needles. Thus it is an implicit admission that this continues to occur in the prisons - a remarkably refreshing fact in my view.
On the other hand, as I pointed out (to deathly silence!), there has been little if any progress on provision of condoms in the prisons, even though this is 'blessed' by the national strategy. At one prison I visited some time back, the warden (with a very straight face) responded to a question on condoms by saying that there were no women detainees, so there was no need for condoms (I really can't believe he was really that naive!).
Nevertheless, I find it amazing and cause from hope that the prison governors are clearly convinced of the need to respond to HIV, including providing methadone (I wonder how many countries have moved that far?).
The dark side of all this is the admitted high rate of mortality in the prisons, rising to 893 deaths in custody in 2007. It seems there has been a slight improvement in 2008, but perhaps what was heartening was that everyone seemed to accept that this rate was totally unacceptable, and must be addressed - hence the Master Plan.
Adding to this is the chronic overcrowding in these prisons. We were told that nationally, occupancy in the prisons is 30-40% over the 88,000 capacity. But this average figure conceals the reality in Java. For example, the juvenile prison in Tangerang has around 950 kids aged 15-18 years incarcerated (almost all for drug offences), against a capacity of less than 250. I heard similar stories about many other prisons, including those for women. Prisoners sleeping eight to a room intended for three. People sleeping in front of the bathroom door. One can only imagine what will happen when TB hits them.
And there also lies a challenge. Sadly this AusAID-supported scaling-up is limited to HIV; there was little talk of integration of TB services. A number of prisons have apparently been provided with lab equipment (including microscopes) by the Global Fund, but there has been no authorization of lab technicians, so the equipment remains in the boxes. Some have tried to make arrangements for technicians from the local community health centre to moonlight in the prison clinic, but this doesn't seem to be a feasible solution.
But I came away heartened. The prison governors are beginning to understand the challenges and seemed determined to come to grips with them. The perplexity that we met even a year ago, the feeling of helplessness in the face of all the problems of HIV and drugs, seems to be clearing. And although the prisons directorate must take much of the kudos, there is no doubt that Dr. Nurlan's team in the AusAID-funded HIV Cooperation Program for Indonesia have quietly stimulated and nurtured this response, and also deserve to take a good part of the credit.
Babé
Saturday, 7 March 2009
Friday, 6 March 2009
Everyone confesses in the abstract
It's been a hectic week! We were asked by UNAIDS here to run three courses on preparing and submitting abstracts to the 9th International Congress on AIDS in Asia and the Pacific (ICAAP). Actually, UNAIDS is only funding; the ICAAP Local Organising Committee (LOC) is responsible for selection of the 150 participants, drawn from seven key groups: drug users; gay, lesbian, bisex and transex (LGBT); women; inter-faith; PLHIV; youth; and sex workers.
Monday and Tuesday we ran the first course. Unfortunately, it quickly became clear that the selection had not been over successful in eliminating candidates who had really had very little of interest or value to present at the Congress. With only four mentors, it was quite a task to help and encourage all the participants to think of an interesting topic and commit it to paper. And of course, few were capable finally to translate the result into English, even more within the 200 word limitation. Google Translate came to our rescue for that; although the result is far from perfect (and sometimes quite amusing!), several of us found it did save time in preparing a first draft.
We heard a lot of stories, some of which I may report here later. Some were indeed only confessions or sharing. But in the end, the majority were able to submit their abstracts on-line (what a change this has made!), and although I suspect some will confuse the reviewers, others will definitely offer a broader community view. I guess if perhaps three quarters of the participants benefit, and half of those have abstracts accepted, it'll have been useful.
The next course, also in Jakarta, is planned for next week, although we still don't have a final list of participants. I'm always amazed at our ability to arrange flights for a large number of people from all over the country at very short notice; pity our poor travel agent!
The rest of the week was spent on prisons; more on that tomorrow...
Babé
Monday and Tuesday we ran the first course. Unfortunately, it quickly became clear that the selection had not been over successful in eliminating candidates who had really had very little of interest or value to present at the Congress. With only four mentors, it was quite a task to help and encourage all the participants to think of an interesting topic and commit it to paper. And of course, few were capable finally to translate the result into English, even more within the 200 word limitation. Google Translate came to our rescue for that; although the result is far from perfect (and sometimes quite amusing!), several of us found it did save time in preparing a first draft.
We heard a lot of stories, some of which I may report here later. Some were indeed only confessions or sharing. But in the end, the majority were able to submit their abstracts on-line (what a change this has made!), and although I suspect some will confuse the reviewers, others will definitely offer a broader community view. I guess if perhaps three quarters of the participants benefit, and half of those have abstracts accepted, it'll have been useful.
The next course, also in Jakarta, is planned for next week, although we still don't have a final list of participants. I'm always amazed at our ability to arrange flights for a large number of people from all over the country at very short notice; pity our poor travel agent!
The rest of the week was spent on prisons; more on that tomorrow...
Babé
Friday, 27 February 2009
The way of the pioneer is always rough
More sad news, I fear. We've lost one of the very earliest of our activists. Sulasi was always open about her status, so I don't think I need to hide her name. She was identified as HIV-positive in 1991, in Surabaya. Like our late friend in Makassar, her case became a sensation.
As one of the very first, she was 'monitored' by the local health department. When she decided to get married a couple of years later, this was forbidden. But Sulasi was always 'her own woman', and went ahead with the wedding anyway. Her husband was (and is) HIV-negative. Given a fait-accompli, the health people said, 'OK, but no children.' Again, Sulasi made her own decisions, and gave birth to two lovely kids, neither infected.
The family returned to her home village about an hour by bus and motorcycle taxi from Malang in East Java. But it got out that she was living with HIV, and she was expelled from the community. She moved to another village, but happily after some time, her original neighbours accepted her back, and she returned to the village with her family to plant coffee. I was lucky enough to meet her and the family in her home in 2002, in a lovely area in the hills to the east of Malang.
It was not until around 2003 that she needed antiretroviral therapy (ART). She started with the standard regimen, supported by Susan Paxton's ARV fund. Unfortunately, she experienced bad side effects from the nevirapine, and at that time, there was no alternative available, so she had to downgrade to dual therapy, Then she suffered from anaemia, and had to change the AZT with d4T. Of course, at that time, there were very few doctors who understood ART, and she again she played a pioneer role.
As I said, she was one of the early activists. She was one of only 16 who attended the first national meeting of PLHIV in Bali in 1998, and she also joined the second meeting, also in Bali, in 2001, where I first met her. In the early 2000's, she was active with the positive community, always being willing to invited to take part. She was one of the first to join in our 'local strengthening visits', as a member of the team with Suzana and I (and Ariel, Suzana's adopted son), on a visit to Makassar in early 2002.
A couple of years later, when UNICEF planned to shoot an Indonesian version of its training video 'With Help and Hope' about the lives of people with HIV, Sulasi was an obvious choice. Do take a look at her story.
In the last few years, we rather lost touch. But we heard from her faithful supporter from the early days, Dr, Kamboji, that she had been admitted to hospital, and he just rang Yuni to tell her the sad news.
We've 'used' Sulasi as an example of one who can survive for more than ten years without ART and progress well again after starting treatment. So apart from all else, we've lost a role model.
Babé
As one of the very first, she was 'monitored' by the local health department. When she decided to get married a couple of years later, this was forbidden. But Sulasi was always 'her own woman', and went ahead with the wedding anyway. Her husband was (and is) HIV-negative. Given a fait-accompli, the health people said, 'OK, but no children.' Again, Sulasi made her own decisions, and gave birth to two lovely kids, neither infected.
The family returned to her home village about an hour by bus and motorcycle taxi from Malang in East Java. But it got out that she was living with HIV, and she was expelled from the community. She moved to another village, but happily after some time, her original neighbours accepted her back, and she returned to the village with her family to plant coffee. I was lucky enough to meet her and the family in her home in 2002, in a lovely area in the hills to the east of Malang.
It was not until around 2003 that she needed antiretroviral therapy (ART). She started with the standard regimen, supported by Susan Paxton's ARV fund. Unfortunately, she experienced bad side effects from the nevirapine, and at that time, there was no alternative available, so she had to downgrade to dual therapy, Then she suffered from anaemia, and had to change the AZT with d4T. Of course, at that time, there were very few doctors who understood ART, and she again she played a pioneer role.
As I said, she was one of the early activists. She was one of only 16 who attended the first national meeting of PLHIV in Bali in 1998, and she also joined the second meeting, also in Bali, in 2001, where I first met her. In the early 2000's, she was active with the positive community, always being willing to invited to take part. She was one of the first to join in our 'local strengthening visits', as a member of the team with Suzana and I (and Ariel, Suzana's adopted son), on a visit to Makassar in early 2002.
A couple of years later, when UNICEF planned to shoot an Indonesian version of its training video 'With Help and Hope' about the lives of people with HIV, Sulasi was an obvious choice. Do take a look at her story.
In the last few years, we rather lost touch. But we heard from her faithful supporter from the early days, Dr, Kamboji, that she had been admitted to hospital, and he just rang Yuni to tell her the sad news.
We've 'used' Sulasi as an example of one who can survive for more than ten years without ART and progress well again after starting treatment. So apart from all else, we've lost a role model.
Babé
Thursday, 26 February 2009
The injustice of discrimination
Activists here frequently press for a law on HIV. The current legislation does not mention HIV specifically, and there is fear that the law on contagious diseases (which allows for quarantining of those infected) might be applied to HIV infection. We all know that HIV is not contagious, but the difference is not clear in Indonesian.
There is also hope that a law on HIV would outlaw discrimination. In fact discrimination in the health care sector is prohibited by the 1945 Constitution. This should be enough, but although one of the most prominent lawyers here, Todung Mulya Lubis, over ten years ago offered to take any cases of discrimination against people with HIV to court for free, no one has yet to take him up on that offer. Why? Perhaps because the law here is unpredictable. And certainly it would be impossible to guarantee anonymity - in fact almost certainly the plaintiff would become famous!
But most discrimination occurs because of fear, caused by lack of understanding, caused by lack of information. As I raised many years ago in a case involving Dr. Samsu, is it appropriate to take people to court for ignorance? Yes, I know 'ignorance of the law is no excuse', but surely the first approach must be to inform people. Of course there are 'bad' people who enjoy exercising their prejudices, but in my experience that's fairly rare here, at least among the medical profession.
But back to a law on HIV. I've always opposed this for a number of reasons. Firstly, would it not be seen as further exceptionalising AIDS? If we need a law on HIV, don't we also need one on hepatitis? And what will happen when the successor to AIDS appears - as it inevitably will? Will we have to wait years again for a specific law covering it? In my view, much better we develop a more general law which can apply to all infectious (but not contagious) diseases now and in the future.
The second reason is that it is easy to start a movement for a new law. But it is impossible to predict how it will develop. I am very scared that, particularly given the moralising by members of parliament which was characterised by the pornography law, we could end up with a law which does more harm than good. I'll return to this topic in a future post.
I have suggested that we should work to get HIV and other infectious diseases covered more generally in existing laws, particularly Law No, 23 from 1983 on Health and/or Law No. 4 of 1984 on Contagious Diseases. In fact, I was involved in work that started some time back with the Parliament to develop amendments to these laws. However this effort expired as the life of that Parliament ended.
Fact is that the Parliament has a huge backlog of draft laws, so there's not much hope of anything effective happening soon. I guess we're left with current advocacy approaches, which may in fact be more appropriate.
Babé
There is also hope that a law on HIV would outlaw discrimination. In fact discrimination in the health care sector is prohibited by the 1945 Constitution. This should be enough, but although one of the most prominent lawyers here, Todung Mulya Lubis, over ten years ago offered to take any cases of discrimination against people with HIV to court for free, no one has yet to take him up on that offer. Why? Perhaps because the law here is unpredictable. And certainly it would be impossible to guarantee anonymity - in fact almost certainly the plaintiff would become famous!
But most discrimination occurs because of fear, caused by lack of understanding, caused by lack of information. As I raised many years ago in a case involving Dr. Samsu, is it appropriate to take people to court for ignorance? Yes, I know 'ignorance of the law is no excuse', but surely the first approach must be to inform people. Of course there are 'bad' people who enjoy exercising their prejudices, but in my experience that's fairly rare here, at least among the medical profession.
But back to a law on HIV. I've always opposed this for a number of reasons. Firstly, would it not be seen as further exceptionalising AIDS? If we need a law on HIV, don't we also need one on hepatitis? And what will happen when the successor to AIDS appears - as it inevitably will? Will we have to wait years again for a specific law covering it? In my view, much better we develop a more general law which can apply to all infectious (but not contagious) diseases now and in the future.
The second reason is that it is easy to start a movement for a new law. But it is impossible to predict how it will develop. I am very scared that, particularly given the moralising by members of parliament which was characterised by the pornography law, we could end up with a law which does more harm than good. I'll return to this topic in a future post.
I have suggested that we should work to get HIV and other infectious diseases covered more generally in existing laws, particularly Law No, 23 from 1983 on Health and/or Law No. 4 of 1984 on Contagious Diseases. In fact, I was involved in work that started some time back with the Parliament to develop amendments to these laws. However this effort expired as the life of that Parliament ended.
Fact is that the Parliament has a huge backlog of draft laws, so there's not much hope of anything effective happening soon. I guess we're left with current advocacy approaches, which may in fact be more appropriate.
Babé
Saturday, 21 February 2009
Use any language you choose
An E-mail from Ken in Australia reminded me that it was time I put a bit of effort into the English language part of the Spiritia web site. Naturally our first priority is to providing clear information for people in Indonesia in their own language. But a secondary objective, similar to the primary one of this blog, is to provide a picture of the state of the HIV epidemic in Indonesia for outsiders who don't speak Indonesian. In addition, sadly there are those working in the AIDS or associated field here whose knowledge of Indonesian (to put it politely) is somewhat limited. We hoped also to help them.
But it's been some time since I had any feedback on the English part, so, well, out of sight, out of mind. I'd even forgotten what information was offered. But Ken, who has an Indonesian partner, and works as an HIV clinical nurse specialist in Sydney, reported that he had been working with an Indonesian student with HIV and TB. This guy is due to return to Indonesia next year, and Ken was trying to find out about treatment options here. And he couldn't find anything useful on our site.
He was right. As those of you who have (perhaps) visited the site will have seen, we'd provided a general article on AIDS in Indonesia, but nothing specific on care, support and treatment (CST). And this information is certainly needed to support our objective of informing outsiders about the situation here.
So this morning, I sat down and wrote this up. I've just uploaded the result Care, Support & Treatment for PLHIV in Indonesia. If you have time and inclination, do take a look and let me know if I've left anything out. It is naturally a bit subjective, but I hope it is reasonably balanced.
Now what else do we need? I'm thinking that there ought to be an article on peer support in Indonesia: how it developed, and where it now stands. I think we've pioneered some interesting approaches, which might be of interest to others. Any other ideas?
Babé
But it's been some time since I had any feedback on the English part, so, well, out of sight, out of mind. I'd even forgotten what information was offered. But Ken, who has an Indonesian partner, and works as an HIV clinical nurse specialist in Sydney, reported that he had been working with an Indonesian student with HIV and TB. This guy is due to return to Indonesia next year, and Ken was trying to find out about treatment options here. And he couldn't find anything useful on our site.
He was right. As those of you who have (perhaps) visited the site will have seen, we'd provided a general article on AIDS in Indonesia, but nothing specific on care, support and treatment (CST). And this information is certainly needed to support our objective of informing outsiders about the situation here.
So this morning, I sat down and wrote this up. I've just uploaded the result Care, Support & Treatment for PLHIV in Indonesia. If you have time and inclination, do take a look and let me know if I've left anything out. It is naturally a bit subjective, but I hope it is reasonably balanced.
Now what else do we need? I'm thinking that there ought to be an article on peer support in Indonesia: how it developed, and where it now stands. I think we've pioneered some interesting approaches, which might be of interest to others. Any other ideas?
Babé
Thursday, 19 February 2009
High thoughts must have high language
I have written before about the trials and tribulations around translating articles into Indonesian. My old friend Dr Erwin Widjono (the founder of the Jakarta Drugs Dependency Hospital or RSKO back in the 70's - but that's another story!) always complained that Indonesian is a very impoverished language. It's very difficult to express shades of feeling in the language. He told me that he first translates to Javanese, which he says is a richer language, and then back to Indonesian.
There's been a lot of correspondence on this recently in the Jakarta Post. It seemed to me that much of it was wide of the mark, But I do think that a language reflects the culture. For example, the fact that there is no word for 'accountable' (at least to differentiate it from 'responsible') seems to me to give some insight into the challenges Indonesia faces in combating corruption. If you get caught, give the money back and all will be well!
Our job has been a little simplified with recent launching of the fourth edition of THE Indonesian dictionary, Kamus Besar Bahasa Indonesia, "The Great Dictionary of the Indonesian Language." The Dutch Ambassador to Indonesia, Dr. Nikolaos van Dam, has just written a very learned but interesting mini-review of this in the Jakarta Post that is worth reading. He notes a number of shortcomings - and he has clearly spent a lot of time with the book - but he notes that it is a very welcome release. As with any language, there are a number of inconsistencies, but it does appear that these are slowly being addressed, as each new edition appears. He notes that the first edition only made it to the shelves in 1988, with only 62,000 entries. The second edition, which is the one I have at home, very dog-eared, was published in 1991 with 72,000 entries. The current edition takes this up to 90,000. I suppose it is unfair to compare this with English - many pocket dictionaries contain more entries than that - but this relatively low number (including, according to His Excellency, 20,000 'loan words', many from his own language) does reflect a degree of poverty.
Of course, English also has its shortcomings. Talking of 'responsibility', we face difficulties when we discuss what is now often called 'positive prevention' - the idea that HIV-positive people should also be involved in breaking the chain of transmission of HIV. A very sensitive topic, partly because they do want to be seen to be 'responsible' people, but clearly don't want to be held 'responsible' for the spread of the epidemic.
Sometimes language can be a barrier to clear communication...
Babé
There's been a lot of correspondence on this recently in the Jakarta Post. It seemed to me that much of it was wide of the mark, But I do think that a language reflects the culture. For example, the fact that there is no word for 'accountable' (at least to differentiate it from 'responsible') seems to me to give some insight into the challenges Indonesia faces in combating corruption. If you get caught, give the money back and all will be well!
Our job has been a little simplified with recent launching of the fourth edition of THE Indonesian dictionary, Kamus Besar Bahasa Indonesia, "The Great Dictionary of the Indonesian Language." The Dutch Ambassador to Indonesia, Dr. Nikolaos van Dam, has just written a very learned but interesting mini-review of this in the Jakarta Post that is worth reading. He notes a number of shortcomings - and he has clearly spent a lot of time with the book - but he notes that it is a very welcome release. As with any language, there are a number of inconsistencies, but it does appear that these are slowly being addressed, as each new edition appears. He notes that the first edition only made it to the shelves in 1988, with only 62,000 entries. The second edition, which is the one I have at home, very dog-eared, was published in 1991 with 72,000 entries. The current edition takes this up to 90,000. I suppose it is unfair to compare this with English - many pocket dictionaries contain more entries than that - but this relatively low number (including, according to His Excellency, 20,000 'loan words', many from his own language) does reflect a degree of poverty.
Of course, English also has its shortcomings. Talking of 'responsibility', we face difficulties when we discuss what is now often called 'positive prevention' - the idea that HIV-positive people should also be involved in breaking the chain of transmission of HIV. A very sensitive topic, partly because they do want to be seen to be 'responsible' people, but clearly don't want to be held 'responsible' for the spread of the epidemic.
Sometimes language can be a barrier to clear communication...
Babé
Sunday, 15 February 2009
Spread my dreams
Residents and visitors to Jakarta will be aware of the Busway saga. There are currently seven corridors in operation, although a lack of buses means that the frequency is well below the five minutes required to make any real impact on the Jakarta traffic. But despite all the challenges (several buses have burst into flames, and the busway lanes are taken over in the rush hours by other vehicles, causing delays to the buses), it was decided to go ahead with another three (or was it four?) corridors.
The new corridors were constructed at great expense, together with foot bridges (the busway lanes are in the centre of the road) and shelters. This infrastructure was completed almost on schedule a year ago. Only problem: someone apparently forgot to order the buses. These have still not arrived - I rather doubt they've even been ordered. So the return on that huge investment has been ... negative.
Now, perhaps because of rising complaints, or increasing embarrassment, or just because an election is coming, the governor has put his foot down. One of the new corridors will start operation on 13th February. Err, 20th February. If it can be made ready. Where will the buses come from? Moved from the other under-served corridors of course. So the service on those will further decrease, while the service on the new corridor will be around every 20 minutes. More people will get to see the buses, even if no more people actually get to ride them. The shelters and the buses will of course get even more crowded - and dangerous.
What has this to do with HIV? Well, just that it is symptomatic. I remember when I was a lad, butter was rationed in England; one pat per person per week. So we had to spread it real thin. This is the policy here: spread it thinner and thinner. Like busway corridors, new hospitals (or new wings in existing hospitals) have been built, but not occupied. Why? No staff. So spread the current man- (and women-) power more thinly. Oh, and the funding too.
Dr. Nurlan, commenting on the HATIP article on problems retaining healthcare workers, noted that in one hospital in Jakarta, qualified nurses are receiving a salary of Rp 1.5 million, well below $150, per month. A little in excess of the minimum wage for labourers here. Below what many household maids get. Not much left over after paying for their (probable) 3-4 hours travel every day (no busway!). The hospital is apparently confused why there is high turnover - and low morale.
The Ministry of Health planned to have 400 ART referral hospitals in operation by the end of 2008. How many now? Still only 150, less than planned for 2006. Why? Shortage of staff, inadequate training, and hospital management that would prefer to refer AIDS patients to other hospitals.
Indonesia is buying a submarine from Russia. Great idea! One submarine to cover the huge expanse of sea that is Indonesia. Spread it thinly, lads...
Babé
The new corridors were constructed at great expense, together with foot bridges (the busway lanes are in the centre of the road) and shelters. This infrastructure was completed almost on schedule a year ago. Only problem: someone apparently forgot to order the buses. These have still not arrived - I rather doubt they've even been ordered. So the return on that huge investment has been ... negative.
Now, perhaps because of rising complaints, or increasing embarrassment, or just because an election is coming, the governor has put his foot down. One of the new corridors will start operation on 13th February. Err, 20th February. If it can be made ready. Where will the buses come from? Moved from the other under-served corridors of course. So the service on those will further decrease, while the service on the new corridor will be around every 20 minutes. More people will get to see the buses, even if no more people actually get to ride them. The shelters and the buses will of course get even more crowded - and dangerous.
What has this to do with HIV? Well, just that it is symptomatic. I remember when I was a lad, butter was rationed in England; one pat per person per week. So we had to spread it real thin. This is the policy here: spread it thinner and thinner. Like busway corridors, new hospitals (or new wings in existing hospitals) have been built, but not occupied. Why? No staff. So spread the current man- (and women-) power more thinly. Oh, and the funding too.
Dr. Nurlan, commenting on the HATIP article on problems retaining healthcare workers, noted that in one hospital in Jakarta, qualified nurses are receiving a salary of Rp 1.5 million, well below $150, per month. A little in excess of the minimum wage for labourers here. Below what many household maids get. Not much left over after paying for their (probable) 3-4 hours travel every day (no busway!). The hospital is apparently confused why there is high turnover - and low morale.
The Ministry of Health planned to have 400 ART referral hospitals in operation by the end of 2008. How many now? Still only 150, less than planned for 2006. Why? Shortage of staff, inadequate training, and hospital management that would prefer to refer AIDS patients to other hospitals.
Indonesia is buying a submarine from Russia. Great idea! One submarine to cover the huge expanse of sea that is Indonesia. Spread it thinly, lads...
But I, being poor, have only my dreams;
I have spread my dreams under your feet;
Tread softly because you tread on my dreams.
Yeats
Babé
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