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.


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...


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!


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.


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?


Wednesday, 18 November 2009

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.


Sunday, 15 November 2009

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!


Saturday, 14 November 2009

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.


Friday, 13 November 2009

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...


Thursday, 12 November 2009

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.


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.