Thursday, 25 September 2008

Care's an enemy to life

Can state hospitals in Indonesia compete with others in the region? The government clearly thinks so. The Jakarta Post reports that 'the government will turn five state hospitals into world-class medical clinics...' The five include the main Jakarta hospital, usually known as RSCM. This huge overcrowded hospital is well-known to many in Indonesia, acting as it often does as a sink-hole for patients who are beyond the capability of those in other areas.

I first got to know RSCM early one evening in 1991, when my partner was referred (dumped) there with an AIDS diagnosis. We were directed to the emergency department, which at that time of day was somewhat akin to Dante's inferno. It was crammed with accident victims and other acute cases. It was (it seemed to me) swimming in blood and vomit. The noise of screaming and wailing was pervasive. The amazing thing was that the staff, mainly young doctors and nurses, were unfazed, patient and quite helpful - within their capacity. Of course, we couldn't find a ward that was willing to accept someone with the dreaded disease - it was a long time ago (although this still occurs in hospitals outside the main towns).

Since then, I've quite frequently visited RSCM. On one World AIDS Day in the late 1990's, a group of use (together with Jane Wilson, then in charge of UNAIDS in Indonesia) cleaned and repainted the two or three wards reserved for people with AIDS. I don't recall a working toilet among them, and the nurse call was a bell - a real bell by the patients' bedside that had to be shaken. Being a small bell, the nurses rarely heard it.

From a couple of wards, a complete floor was allocated for people with AIDS in later years. Again, some surprises. On one survey we asked the chief nurse on the floor if injecting drug users (IDUs) were a problem. Yes, he said, their discarded syringes kept bunged up the toilets. So much for our concern over acceptance of IDUs in the hospital.

I think it is that block which has now been emptied and will be demolished (not before time) to make way for the new international wing. But one result has been that patients from out of town have been turned away, and recently had to rent a house to stay in. But then, they don't pay in dollars!

But it's not only a problem of facilities, as another Post report today notes. The Jakarta chapter of the Indonesian Medical Association is urging members to improve their quality of care. And the speaker of the parliament has said that medical officials should ask themselves why many people (and not just the rich) go overseas for treatment. Even patients in private hospitals get a very limited time in the doctor's office, and rarely get questions answered in a way they can understand. Even explanations, for example about side effects of drugs prescribed, are rare and brief.

Meanwhile, the main government hospital in Kupang burst into flames recently and patients had to be evacuated. Two or three died in the process.

I fear that the huge investment in 'internationalisation' will not stem the flow of patients to Singapore, Malaysia and Thailand, but will also provide limited benefit, probably at much greater cost, to the average Indonesian patient.


Wednesday, 24 September 2008

...em-body the law

AIDS cyberspace in Indonesia is hot about the draft law on pornography, currently being debated by parliament, and promised as a Lebaran present to the Muslim community. Although (probably) few have actually studied the draft, there is much fear that it will impact on the diversity of Indonesia. For example, will it be against the law to photograph a Papuan wearing only a koteka (a penis sheath)? Will women (again) become the main victims of the bill?

At least the draft seems to have dropped its related focus on 'pornoaksi', a very Indonesian concept of actions that are pornographic. These include the 'drilling' dancing developed by one dancer, but it was also touted as forbidding a goodbye kiss between two men at the airport.

Several AIDS activists are concerned that producing and distributing pictures of human genitals will become a criminal act. Will this apply to pictures used in activities around 'reproductive health' (the usual euphemism for 'sexual health')? What about the Spiritia Q&A forum? Although I rarely now answer them, I still often get questions using language that could be considered porno - although I'm often amused that the questioners write 'maaf (excuse me)' before such naughty words as 'penis' (or even 'constipation'!). If I reply referring for example to 'vaginal sex'. will I be locked up?

Several commentators (including Kartono Mohamad, former chair of the Indonesian Medical Association, and brother of Gunawan) have noted the several items of 'ethnic' food in Indonesia also use 'naughty' words. Kartono's example is 'kontol kambing (sheep penis)' - a cake from Malang in East Java. 'Kontol' is a very crude word, and I'm always scared to use the Indonesian word for 'control' (work it out), in case I leave out the 'r' by mistake. Will peddlers of such food also end up in gaol?

Dr. Nadiar from the National AIDS Commission (NAC) has made the reasonable point that we shouldn't criticise the draft if we haven't read it. But in many of these (unfortunately poorly-drafted) bills, interpretation is everything. And the police are not known for liberal interpretation. I'd prefer it if Dr. Nadiar promised that the NAC would defend us in cases of unreasonable arrest.


Tuesday, 23 September 2008

This peculiar illusion of collaboration

Been off the air for the last couple of weeks, due to a lengthy visit to Perth in Australia, partly to attend the 20th Conference of the Australasian Society of HIV Medicine (ASHM). Many of the science sessions were well over my head; my colleague Tim Mackay commented that listening and watching the slides of some of these sessions was like attending a symphony concert: you don't understand it, but it sounds good.

Quote of the week: "There's more of the virus in us than us in us".

There were a surprisingly large number of sessions reporting the results of collaborative research between the big academic institutes in Australia with research organizations around the Asia-Pacific region, including in Malaysia, Cambodia and of course Thailand, where Australia cooperates with Holland in the HIV-NAT (Netherlands-Australia-Thailand) consortium. But nothing from Indonesia.

Or at least almost nothing. Only a very curious report from 2006 on side effects from first-line therapy, with participation from Malaysia and Pokdisus AIDS, the clinic operated by the Cipto Hospital in Jakarta together with the University of Indonesia Faculty of Medicine. This reported that, in the Jakarta arm, almost all of the patients were taking d4T (a really nasty drug, at least for anything over around six months). But the 'official' policy in Indonesia (unlike in Africa - luckily!) is to use AZT as the drug of first choice, with d4T reserved for cases of anaemia caused by AZT. So why were they all taking d4T?

I collared the speaker (Kate Cherry) about this, but she confirmed that this was what she was told, and that she was informed that AZT was difficult to obtain in Indonesia! Very curious!

To get back to the point. As far as I know there is no real clinical research being done around AIDS in Indonesia, certainly nothing similar to the other countries I mentioned. There are no doubt many challenges (though more than Cambodia?), but one is no doubt that the Minister of Health will not allow any samples to be sent overseas. Great if Indonesia had microbiology labs and equipment to do all the research. But it doesn't and collaboration would surely be a win-win situation, including for the patients. Oh well...


Thursday, 11 September 2008

Human rights and human wrongs

Sorry, it's been a while since I wrote! The Telkomsel Internet connection in Kupang was really frustrating, on-off-on again. Almost impossible to do useful work.

The training there went quite well. The general level of participants was not very high, almost at Papua level. So we had to do a lot of extra explaining, which added at least an hour to each day's schedule. So I was quite tired by the time I returned.

As usual the session on Human Rights and HIV triggered a number of stories, many of them quite awful. The pregnant young lady in Atambua who was put under pressure to have a Caesarian, though luckily another doctor supported her choice of natural birth. But then, while nursing her one-day old, the local TV station cameraman barged in and filmed her. The clip was aired on the local news, and when she was discharged with new-born, she found herself evicted from her lodgings, Not so bad as these things go, but a reminder that although in general the situation may be improving (less hospitals are burning mattresses from beds in which PLHIV die), many of our friends still face daunting situations.

Way back when (well, in 1995), a then rising lawyer, Todung Mulia Lubis, offered to take any case of discrimination against PLHIV to court, gratis. He said he wanted to generate some precedents. Although he is now well-known, I'm pretty sure the offer still stands. But in the 13 years since then, no one has taken him up on this offer. I'm sure the main reason is that they are scared taking a case to court will only make their own situation worse. But I think partly it's because there's a feeling, reasonable in my view, that many such cases can be better addressed by advocacy. Most (though by no means all) of the cases of discrimination in the health service stem from lack of knowledge or understanding, which feeds fear. We can't take people to court for not knowing (although perhaps we should be able to sue the managers and decision makers who have neglected the training and information dissemination). Advocacy and discussion, together with experience, can usually solve the problem. Often it's only the first cases in a hospital which generate problems; once treating PLHIV becomes 'normal', the problems usually disappear.

Off to Perth tonight for the ASHM Conference (well, a few days holiday in Margaret Rive first with Tim Mackay). Hope the Internet connection is better there than in Kupang!


Saturday, 6 September 2008

Evil communications corrupt...

The Telkomsel (national mobile telephone operator) Internet connection here in Kupang is going from bad to worse. Today it has been almost impossible to use my mobile even for calls. Most of the time, there has been no service; it comes on for a minute or so, then drops again. The SMS connection has been down for most of the day.

At lunch time, I needed to check my bank account. I had just managed to enter my password, get that accepted, and click the Account Info button, when the Internet connection dropped. There's been no service since then, It's now 9 p.m. and we're still getting no service. I tried complaining, but all I got was thanks for informing them of the problem! As if they didn't know! Or at least they SHOULD know that their service is dreadful. The reality (as I should accept) is that they really don't care!

Perhaps I should be counting my blessings. We've now got so used to being able to communicate. But not so long ago, we thanked God for even a fixed telephone connection and the ability to get through. The system (such as it was) was so overloaded that, even if you could get a connection to the exchange, it was unlikely you could get a line to whoever you were calling. We used to employ telephone diallers, whose only job was to dial the number again and again until finally they got through. And hope you weren't on the toilet then!

Oh well! Adventures! Lord knows when (or how) I'll get this posted.


Thursday, 4 September 2008

Capital sentence

There's a lovely couple here in Kupang, that I have known for several years. But only today I found out a little more about them.

It was back in 2004, before they were married, that they decided to get tested. Sadly, the result was that both were positive. Luckily they did get counselling. Unluckily, the counsellor had little knowledge or idea about HIV - not particularly unusual here. So she told them that they had only two months to live! And they believed her - had no reason to distrust her.

So they sold all their belongings and cashed in all their savings to buy a really good set of clothes to be buried in. They arranged their funeral, and their final resting place. And they waited. In fact, both were in good health, so they couldn't see any change occurring, but still...

A couple of weeks before the deadline (a real 'deadline'!) they hired a boat to go out to sea, with the thought of drowning themselves. But both could swim, and feared that one or both might survive. So instead they had a discussion about who should be the first to die, and who should be left. Still, since they both had the same deadline, it didn't seem a huge matter.

A few days before the deadline, they finally met up with Emils from Flobamora, and told him their story. They were still very fit, but assumed that the end would come suddenly. Emils told them that the counsellor was talking balderdash, and that there was no reason for them to die, but they were unconvinced. Luckily, my colleague Yuni was visiting. She had been diagnosed in 1997, eight years previously. And was still very fit, and most clearly still alive. This convinced them that they had been mislead.

They had to start life anew, because they had sold everything and had no savings, but at least they had their lives, each other, - and a really posh set of clothes including expensive shoes that have never been worn!

They got married, and the really good news is that today I heard that they are expecting their first child.


Tuesday, 2 September 2008

Those who can, do...

Arrived in Kupang in East Nusatenggara this morning for a week with Caroline (one of my Spiritia colleagues, and a frequent companion on these trips) to do treatment education training. Today we've been training a couple of members of the local peer support group (Flobamora Plus) to present some of the sessions, and the training proper will start tomorrow afternoon. There'll be 18 participants, including some from Flores (the island to the north) and (if they arrive), three women from Timor Leste.

The place chosen for the training is ideal. It's a convent on top of a hill above Kupang, I guess about six or eight kilometres out of town. But it's really remote; so quiet! We who live in Jakarta find it quite eerie, especially as there are only four of us staying here tonight. But it's not only the noise pollution we miss; we can also see the stars, shining so bright, a sight which has now totally disappeared in Jakarta.

We've done this training more than a dozen times. It's always tiring, but it's always fun. We try to make it interactive, and since usually most of the participants are on antiretroviral therapy, we always learn something new. So I hope I'll have some stories to share over the next few days.

Of course, convents don't usually offer wi-fi, and internet connection here will be a challenge. Let's hope Telkomsel doesn't let me down...


Monday, 1 September 2008

You can have no test which is not fanciful

What should we be doing to encourage people to have an HIV test? According to even the most optimistic estimates, less than 10 percent of those living with HIV in Indonesia are aware that they are infected, and many are dying of AIDS undiagnosed. Does this matter?

Most would say yes. With treatment available now, we could save these deaths. Or could we? The health system is overwhelmed attempting to care for 20,000 or so people with HIV; how would they cope with 200,000? The drug supply chain is collapsing (regularly collapses) under the strain of supporting less than 10,000 on antiretroviral therapy; how would it cope with ten times that number? And of course, who would pay?

So when we again hear the experts telling us that voluntary testing must be replaced with a system whereby the doctor just refers any patient for an HIV test, I get a little worried. Apart from anything else, the Provider Initiated Testing and Counselling (PITC) system is still supposed to be voluntary: people are automatically referred to a Voluntary Counselling and Testing (VCT) service. The opponents of PITC reject it mainly because they fear that people will be coerced; telling us that the voluntary system must be replaced confirms their fears.

Actually, nobody seems to agree on what PITC means. My understanding was that it was supposed to mean that, if a patient has symptoms or behaviour patterns that could suggest possible HIV infection, the doctor should automatically refer the patient for VCT (some would suggest that this should be the case anyway). There is disagreement over whether the standard VCT would apply; some would replace individual pre-test counselling with mass provision of information.

But it is clear that the proponents do not stop there. They want to see HIV testing being done in the same way as tests for diabetes or dengue fever. Just send the patient to the lab with 'HIV' ticked on the list of tests (incidentally what was done with my partner back in 1991). They agree that there should be post-test counselling, but they gloss over how this should be done. They also ignore the fact that, despite what 'we' all say, post-test counselling is usually a waste of time. As soon as the counsellor utters the word 'positive', the client usually hears nothing else. Or if the word is 'negative', the same is true, if for different reasons.

Even worse is the fact that, no only is the medical profession unready to treat all these people, it is not even ready to accept them. We still hear almost daily reports of doctors who will not touch people they know are HIV-positive, who propose 'universal' precautions only for those known to be infected, and who discriminate against such patients. Many nurses are still scared to death of AIDS, perhaps reasonably given the attitude to universal precautions and infection control, and the frequent lack of any protocols on post-exposure prophylaxis.

We should definitely do a better job of promoting VCT. But we need to do a lot more than just case-finding.