...the Spirit that always denies!

I'm sure we should never feel glad that a fellow human being has died. However, the death of Christine Maggiore, the renowned (or notorious) AIDS denier, almost certainly of AIDS, suggests poetic justice. It is difficult to defend a mother who would allow her three-year old daughter to die because of her misplaced beliefs.

What has this to do with Indonesia? Sadly, once again there are those here who are touting the idea that AIDS is not caused by HIV, and that AZT is a killer. A couple of recent postings on the Spiritia Forum, one quoting at length from "...an expert pathologist and toxicologist, Dr. Mohammed A. Al-Bayati", who also maintains that "HIV Does Not Cause AIDS." These threads have attracted many readers and a number of responses, some from folk taking ARVs who appear ready to be convinced.

Although not causing the same degree of furore in Indonesia as 'porous condoms', to me these statements are even more dangerous. Following the posting a year or so back on the Indonesian language AIDS mail list of links to the denialist web sites, our eminent epidemiologist defended this, on the grounds that we must be willing to accept all opinions. Opinions, my foot! If I was to publish the 'opinion' that avian flu was caused by aspirin, there would be hell to pay!

If people are persuaded that AIDS is not caused by HIV, but by malnutrition and AZT (as I understand the deniers maintain), why should they bother with condoms, porous or not? AZT is indeed a toxic drug (like many others), and it wouldn't need much to persuade some people using it (and surviving because of it) to stop taking it. The pseudo-scientific 'proof' presented by Maggiore and her mentor Prof (another one!) Duesberg is difficult to fight - but fight it we must!

Babé

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.

Babé

...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.

Babé

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...

Babé

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!

Babé

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.

Babé

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.

Babé

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...

Babé

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.

Babé

Eating the air on promise of supply

The supply chain for antiretroviral drugs (ARVs) in Indonesia is a real mess. Almost every month, at least one hospital runs out of one or more of the drugs. And about every three months, the country runs out. The problems vary from orders not placed, no money, poor inventory control and reporting in the hospitals, lost reports at the centre, and on and on.

I've talked before of the reluctance to start therapy by those who really need it. Not surprisingly, one common reason is that they are scared about sustainability of supply. They've been told that if they miss doses, they'll become resistant, and they wonder what they'll do when the supply line suddenly becomes empty.

Naturally, there's a wider fear that the government will lose interest in fully subsidizing ARVs, particularly as the numbers grow. There is no long-term guarantee; not only is the government budget only valid for a year, the actual funds are usually only released six months or so into the financial year, and have to be spent before the end of the year. Impossible to manage.

Of course the alternative to starting, albeit riskily, is clear: fall sick and die. AIDS is not forgiving! When ARVs first became available, we tired to guarantee supply for 12 months; they could at least they would survive for another year. But that's really not acceptable.

The price of ARVs will drop. The last information I had was that the government is paying Kimia Farma around $500 per year for the basic triple-drug regimen. This is now available on the international market through the Clinton Foundation for only $100. That's less than most of our friends spend on cigarettes in a year. Is that a reasonable comparison?

Would we be better without subsidy, but controlling the supply ourselves?

Babé

I ... am trublit now with gret seiknes

Yesterday had a call from a young executive living with HIV. His CD4 count is around 150, but he's not yet started antiretroviral therapy (ART). But he was calling to ask about the side effects he was still experiencing after a month's TB treatment. He told me that a test had shown that he had active TB, but no he was no longer infectious. So, he asked, could he stop the TB treatment? It turned out that he did not know that he must stay on TB treatment for six months.

Why had he not started ART? Because his HIV doctor said he should wait until he had completed two months of TB treatment. Never mind that the guidelines say that people like him should start ART 2-3 weeks after starting TB treatment. Never mind that 'we' all know that TB is the main reason why PLHIV in Indonesia die.

From what he said, it seemed that his TB doctor knows little about HIV. I suggested that the young man should ask his HIV doctor to talk the TB doctor. He just rang me to say he had just raised this during a visit to his HIV doctor. The doctor declined, saying he could not interfere between a doctor and his patient!

Sometimes I'm at a loss!

Babé

Without let or hindrance

For the first time in my 'Indonesian' life, today I was forced to do the 'Singapore Visa Run'. Up to now, more recently with help from friends, I've managed to arrange longer term visas. In fact on two separate occasions, I managed to obtain a permanent stay permit (KITAP). But only in Indonesia would a 'permanent' permit be only valid for five years!

Anyway, my luck ran out, and today my visa expired. Since I'm going to the ASHM meeting in Perth next month, and after a short period back in Indonesia, will be taking a couple of weeks leave in Blighty (UK) over the Lebaran holiday, it made no sense to get a single-entry business visa. So, off to Singapore on the early morning Garuda flight, quick turn-round and return on the same plane - less than an hour in Changi airport.

The visa-on-arrival at Sukarno-Hatta was remarkably swift and efficient - I'd heard of 40 minute queues, but it seemed only three people on my flight needed visas. I was scared the officer would look at my passport, indicating residence in Indonesia since it was issued in 2004, but he didn't seem to care. He even stuck the now standard full-page visa sticker on a less-than-empty page towards the front of the passport - with the price passports are now, we must make them last!

The whole thing took only eight hours from home to office via Singapore. But it didn't leave much change out of US$300!

Not a very exciting adventure. But then, sometimes I prefer it that way.

Babé

The cat in gloves catches no mice

Since the first cases of AIDS in Indonesia (and elsewhere, I'm sure), hospitals have got their knickers in a twist about universal precautions. These require health care providers to assume that all patients are potentially infected with a nasty, which they could catch themselves or pass on to other patients. So they should take appropriate action to reduce that risk.

The most basic precaution is to wash hands before and after handling any patient - in theory the simplest and cheapest precaution, but in practice often the most difficult. Even if you can persuade the doctors to spend 15 seconds washing their hands, there is the problem that it is not unusual for hospitals here to be short of water.

For more risky activities, like taking blood samples, they should wear latex gloves. But the budget for these is usually red-penciled so there's always a shortage. Visiting a hospital can be like the condom advert, with lines of recycled gloves hanging out on lines.

But although it's rarely necessary, somehow universal precautions here are always equated with 'pakaian astronaut' (you can work that out). A doctor on one mail list here recently noted that patients would become offended if their doctor wears such clothing to set up a drip. Probably rightly! So unnecessary! Although there are of course times when such clothing is needed, for example for midwives assisting birth. But of course, they never get it.

Many hospitals charge patients for the latex gloves used on them, again causing offence for those who do not understand. So many hospitals institute what we call 'Odha precautions' (Odha = PLHIV): they only take preventive measures for patients known to be HIV-positive. Some require testing on arrival to determine status.

Couple of years back we discussed this with the director of one of the more prestigious (and expensive) hospitals in Jakarta. We noted that universal precautions are also needed to prevent transmission of hepatitis B and C viruses, which are much more infectious than HIV. We also noted that these infections were much more common than HIV among the 'general population' in Indonesia. His response? "We don't treat the 'general population."

Little wonder that more than 10% of patients in Indonesia catch something nasty while in hospital.

Babé

Groaning for burial

Back in the 'old days', at the start of the AIDS epidemic in Indonesia, there was thought to be a regulation that the body of anyone who died of the disease should be wrapped in plastic. I have never managed to confirm that this rule ever existed; I suspect it was a hang-over from the assumption that HIV is a contagious disease.

Back in 1993, when my partner died, the hospital and the morticians informed us that the body must be swathed in plastic, particularly as it was to be flown back to his home town for burial. Since he had arranged for the customary viewing, we obviously wanted to avoid the use of a body bag. I discussed this with Mary, the lovely Irish matron at the hospital, and she said, "Leave it me".

It was Mary who washed the body, and dressed him, as he had previously requested, in his best suit and tie. She then arranged to buy what the English call a 'plastic mac', a raincoat made of plastic. She then put this on over the suit, making it as discreet as possible.

It did look a bit curious, and some of his friends wondered whether it was the monsoon season in heaven, but it was a lot better than a plastic bag!

I was reminded of this as a I was re-reading Suzana's poem, Together Building Hope. Her partner was less lucky than mine, as she notes in the poem:

At this moment I see
How you are inhumanely isolated by people in your community.
I witness in my mind's eye
As your body is wrapped in plastic
While your soft blanket that I recognize
Is thrown into a hot flame
That glows of strong rejection of yourself
After much suffering
Because of the virus.

Do read (and perhaps weep a little over) this poem. Over the next few weeks, we'll try to add some more of Suzana's poetry and prose in English on the Spiritia web site.

Babé

The practice of physic is jostled by quacks...

...on the one side, and by science on the other.

On Sunday mornings I wake up to "The State We're In: Human Rights and Human Wrongs" from Radio Netherlands and WAMU Washington, relayed on the World Radio Network. This morning, one of the topics was alternative medicines: "quackery or essential" (One man's shaman, another man's fool?).

I've talked before about the quackery in Indonesia. But it's not all promoted by quacks. I've also talked about the liver problems which are a bigger challenge than HIV for many of our friends - I've just been contacted by one who has levels of liver enzymes 15 times normal (ten times is usually considered pretty dangerous). Sadly there's not much that 'Western' medicine can do for him; there are no drugs which can repair a damaged liver.

But traditional medicine has for years offered mixtures of herbs that have proved effective for liver damage caused by poisons, such as certain other 'natural' toxins (e.g. poisonous berries). Are these effective against liver damage caused by hepatitis? There's no evidence of that. But many doctors in Indonesia are prescribing concoctions known as 'hepatoprotektor' (you can probably work out what that means) to people worried about the level of their liver enzymes. And yes, they are actually writing out prescriptions for these products!

Liver enzymes tend to 'flare'. For no apparent reason, the levels suddenly rise dramatically. Then a few days later, they drop back to around normal, again for no apparent reason. So, if someone has a test at the peak of the flare, takes the prescribed herbs then tests again a few days later, lo and behold the problem has gone.

Cause and effect? No, but tell that to the patient!

Babé

The wish is the father of the deed

I've talked before about the controversial Swiss statement. I've also commented results of the mathematical model study, that showed that if an HIV-positive partner with undetectible viral load, etc. discarded his condom during sex with his negative female partner, an additional 425 women out of every 10,000 such partners would become infected over ten years.

Relevant or not? I have met with quite a few of such women. It is not unusual for them to admit that it is they who encourage their partners not to bother with condoms. Why? Because HIV builds a wall between them.

Any marriage or partnership is to a greater or lesser extent fragile. Many factors affect its long term success. But there is no doubt that, while there are indeed a number of durable discordant relationships, this barrier can be a major challenge. Since it is unlikely that the positive partner will become negative, the feeling that 'everything would be simpler if we were both positive' often arises, particularly in the negative partner. And the wish indeed becomes father to the deed.

In different circumstances, this used to be called 'bug-chasing'. I think this term was originally coined among gays in the US, where the majority of the community was HIV-positive, and those who were not infected felt like outsiders. There's perhaps also an element of guilt: why him, not me? In addition, in close relationships, there may be a feeling that 'Better death than life without him.'

Whatever the reasons, it's surely happening. Perhaps the Swiss statement will provide additional encouragement, even though the logic will be a bit convoluted: "Unconsciously I want him to infect me, so I'll tell him to forget the condom, because now the risk is less."

But then, people often don't think logically, particularly about sex.

Babé

The black flower of civilised society, a prison

I visited my first prison in Indonesia in late 2002: Kerobokan in Bali, We knew that the prison was home to many injecting drug users (IDUs), and a study by Made Setiawan et al from 1998 had told us that even then a quarter of the prisoners were still injecting - then as now, it's often easier to score in prison than outside on the street. More recently, surveillance in the prison had reported 36 IDUs with the virus out of 66 tested.

We sat down with a group of about a dozen inmates, together with Dr Hartawan, the prison doctor. We gave our standard pitch about HIV infection, and the risks of sharing needles. At this, one of the inmates grew quite angry. He told us that we were the nth group of visitors who'd come to tell them that it was quite probable that they were HIV-infected. But still there was no way for them to get tested, to put their minds at rest, one way or another. This, he said, was a violation of his rights. Reasonable.

Dr Hartawan told us that the authorities were very not yet willing to allow testing. If this was offered and the identities of infected inmates became known, other inmates might refuse to share cells with them, there might be violence, and discrimination would be inevitable.

However, not so long afterward, we heard that the authorities had allowed testing to start, initially just prior to discharge, but shortly thereafter for anyone who requested it. Thanks to a great extent to the efforts of Dr. Hartawan, but with support from a number of NGOs in Bali, there was no violence.

In mid-2004, I was asked to assist a group of activists in Bali who had carried out a needs assessment among HIV-infected injecting drug users (IDUs) in the island. During the discussion, I was told that 'stigma and discrimination has disappeared from the Kerobokan prison.' I could not believe my ears! I asked: among inmates, among staff and warders, or who? All, I was told.

The next day, by chance, I had arranged to visit one of my old friends who was in the prison, He's an HIV-positive activist who was there for drug-related offences. He had previously been very open about his status, so everyone in prison knew about it; it couldn't be hidden. When I arrived, he was taking part in a quiz about HIV involving several teams of inmates. This had been organized by Dr. Hartawan. I was amazed at how much they knew.

After the quiz, we went to the prison canteen for a coffee, I asked him about the report; was it true that he had no problems with discrimination? He told me that when he had started his sentence nine months before, it was terrible. But with support from Dr. Hartawan and NGO friends, and with his own efforts, there was no longer a problem. The canteen was quite busy, and no one took any notice of us. "Look at this," he said. "Nine months ago, if I came and sat down here, everyone else ran away!"

Conventional wisdom said that people with HIV would inevitably face stigma and discrimination in prison. Kerobokan, and Dr. Hartawan, proved this could be overcome. Since then, this has been replicated in many prisons around the country.

As with so many other aspects of this epidemic, Indonesia has again proved that conventional wisdom can be wrong.

Babé

Foul contagion spread

I'm quite often contacted by expats living with HIV in Indonesia. Understandably, most are worried about their future here; will they suddenly find themselves person non grata? Even more so for those who have suffered from Singapore's draconian laws, see my comments in Avoid Singapore.

Just had an E-mail from one who had just lighted on a report about Magic Johnson being denied entry back in 1994. This notes that people with contagious diseases can be banned. In fact, HIV is not (in theory) considered a contagious disease under law No. 4 of 1984 on 'wabah' (contagious epidemics), for which reason we always caution against the application of the term 'wabah' to HIV.

But of course that's not the point. If the government does not wants to terminate our stays, they can always make 'difficulties' when visas or work permits need to be extended. This is what happened in the mid 90's to the infamous Thai fishermen who are always blamed for the AIDS epidemic in Papua. But frankly it's not very likely to happen to an expat professional.

However, my correspondent also noted that he came across one Indonesian consulate which require "some sort of 'vaccination' document in triplicate for Hep B and HIV it says (stupidly) in order for foreigners to apply for a long stay pass.' He noted 'Probably best to let a sleeping dog lay', so I'll not quote the location.

Let's hope that's not the shape of things to come.

Babé

Deprived of a voice in legislation

Can you be a legislator it you are infected with HIV? Apparently some of the Indonesian political parties don't think so. They will require their candidates to produce a lab test report that proves they are free of HIV and AIDS.

This has become a hot topic in Indonesian AIDS cyberspace. The law apparently requires candidates to be 'physically and mentally healthy', and even some of 'us' think that someone infected with HIV is not physically healthy, and thus the position of the parties concerned is appropriate, But 'we' mostly believe that, not only can someone with HIV be just as healthy as an overweight person, or a chain smoker, but it would be a great benefit to have someone living with HIV in parliament.

Of course, this all ignores the fact that almost certainly there is someone with HIV among the current 500+ national legislators, not to mention the hundreds at province and district level. And there will certainly be others who have children with HIV. Indeed, it is said that ..., but no, I shouldn't pass on rumours...

Naturally, no one asks for proof of mental health...

Babé

The dead spit

One of the most popular activities at Indonesian Independence Day contests is the climbing the greasy pole. The pole in this case is usually the smoothed trunk of a betel nut tree, known in Indonesia as pinang. But in many parts of Indonesia, and in particular in Papua, this tree is better known for the areca nuts it produces, Chewing these nuts, together with sirih leaves and lime, produces a mild stimulating effect. Basically it's a legal recreational drug.

Betel chewing is probably not quite as bad as alcohol consumption, the other scourge of Papua. But it may be no less dangerous in spreading disease. As far as I know, no one has studied whether its stimulating effects match that of other stimulants in driving sexual activity. But that's not the main problem.

The trouble is that, after chewing, the red coloured residue is spit out - usually with complete abandon. You can see the red stains all over pavements - even the corridors of hospitals. The 'makings' (nuts, leaves and lime) are sold by hawkers everywhere, including outside hospitals wards.

Spitting is a really efficient way of spreading TB - which is epidemic in Papua. I'm sure it's a significant cause of this continuing (and probably expanding) epidemic. And of course, TB is the leading cause of death of people with HIV, again particularly in Papua. But to my knowledge, there has been absolutely no campaign aimed at reducing betel-nut chewing, or persuading people not to spit. Changing this habit, as with smoking (and other dangerous habits we all know about) will no doubt be difficult, and probably take several generations. But is this a reason not to start?

I remember as a lad the notices in the public conveniences in London: 'Spitting causes Consumption'. We urgently need to emulate these campaigns in Papua.

Babé

Ignorance brings us nearer to death

A couple of years back, a very pregnant young lady came to see me, let's call her Desni. She told me that she was living with HIV, and wanted to know what she should do to stop her baby becoming infected. I gave her details of the latest guidelines that I got from the Internet. She then told me that she had already been to Dr. A at the B Hospital, who had given her different advice. Desni had then talked to a counsellor at the C Hospital, and again got different information.

Desni is an intelligent and relatively well-educated person. But she was (naturally) confused. Like a good counsellor, I told that all I could do was to pass on the latest information so that she could make a decision. And in the end, that's what she did: she decided to do nothing. Her baby has HIV.

I still feel a little (or more!) responsible. Problem is that the advice on preventing mother-to-child transmission of HIV seems to change every few months. This is especially true of recommendations about breast-feeding. Should we advise based on latest ideas, or should we restrict ourselves to national guidelines, which are usually several years out of date?

Most of the AIDS referral hospitals in Indonesia are treating less than ten people with HIV. How can the doctors and counsellors possibly keep up to date with the rapid developments in HIV practice, particularly since many have very limited English language capability, and poor Internet access?

People are dying for lack of information.

Babé

The baby figure of the giant mass of things to come

We often seem to get our knickers in a twist over the statistics. Take for example the following quote from the article "'Moderate-risk' Indonesia to see HIV boom: Report" in yesterday's Jakarta Post"

"[National AIDS Commission deputy secretary for development] Kemal said if Indonesia failed to improve its preventive measures against HIV/AIDS infection, the country's number of people living with the disease would rise from the current 12,686 to in excess of 1 million by 2020."

As 'we' (but few of the general population) know, the first figure quoted is the total number of people reported by the Ministry of Health (Depkes) to be HIV-infected as at 31 March 2008, based on reports received from the provinces. (Depkes separately report a total of 24,238 cases followed in 90 of the AIDS referral hospitals as at 31 December 2007, but I'm sure there's good reason for this apparent discrepancy!) It is NOT the number of people living with the disease in Indonesia. The current 'official' Depkes estimate of people infected by HIV in Indonesia is 193,000. This was published in 2006. UNAIDS recently estimated that the number of those infected with HIV in Indonesia as at the end of 2007 was 270,000.

Is the figure of 1 million by 2020 also reported cases? Hopefully the proportion of those infected but unaware will fall from the current 90%, but I doubt we'll do better than identifying 50% by then. If it's reported figure, that could mean that total infections could be 2 million in 2020.

My gut tells me that figure might just be right.

Babé

...and clapte the wyndow to

You'd think that trained counsellors would be able to understand the meaning of the window period (the period of up to three months between infection with HIV and the generation of sufficient antibodies to produce a positive result from the HIV test). But no, they almost always seem to tell clients with a non-reactive result that they need to come back in three months for another test, regardless of when the last risky event took place.

I've just had a question from a very worried young man with HIV in Bali. His wife is due to give birth in a couple of weeks, and he's just got around to thinking about whether his wife is infected. She was tested a couple of weeks back, with a non-reactive result. 'Naturally', the counsellor is worried that she might be in the window period, so told her it's not certain she's not infected. Seems the counsellor didn't ask her or her husband when they last had unprotected sex. I just talked to the husband; in fact it's been more than six months since they had sex without a condom. So the wife is negative, and they don't need to worry.

Because of the 'uncertainty', she's being pressured to have a Caesarian, which they can't afford, which isn't necessary, and which could put her at risk.

Of course, in theory, the couple make the decision. In fact, the moral pressure is immense.

Babé

This strange disease of modern life

Not sure want triggered it, but the front page headlines in Kompas for the last couple of days have been about tropical diseases. As in most of the world, these are neglected, not only in terms of treatment, but also as the reports are making clear, also in local research.

It is worrying that leprosy is on the rise again. Only a month or so ago, we had our first report of this nasty disease affecting a PLHIV in North Sulawesi. Let's hope that's not the shape of things to come. And while malaria incidence is said to be decreasing, it still remains high, particularly in Eastern Indonesia, where the burden of HIV (and of course many other diseases) remain high. As you probably know, malaria can exacerbate the transmission of HIV from a mother to her unborn baby.

Seems like one problem with research is that we want to leapfrog, with exciting new results. But as the Vice-President noted on a recent visit to the Indonesian Research Institute (LIPI), the results are often only suitable for a museum. The fact is that, if there is any operational research, the results remain secret. As one respondent to our question/answer forum recently noted, we have no idea about the profile of antiretroviral side effects , and whether this differs from other parts of the world, let alone around the multiple ethnic groups in Indonesia.

We also have no clear picture about frequency of opportunistic infections. Partly this is because most hospitals lack ability to diagnose many of these, but surely the major teaching hospitals in Java, where most of the AIDS cases are treated, should have this ability? As it is, we still report diarrhoea as the second most common 'infection', with no data about the causes. And MAC, usually quite a common opportunistic infection, does even make it to the list.

If we can't diagnose it, how can we research it?

Babé

ART and Song

Although singing is very common in Indonesia, and some ethnic groups (I'm thinking particularly of the Bataks) are famous for their choirs, there seem to be no 'activist' songs. Something reminded me today of meetings of AIDS activists that I was lucky enough to join on two visits to South Africa a few years back. Participants always seemed to be singing. If the meeting was a few minutes late starting, they'd sing! During the breaks, they'd sing! At the end of the day, they'd sing! Someone would sing a few bars, and straight away the rest would join in.

And the singing was great, not your normal karaoke racket. The songs were 'activist' songs, and everyone knew the words and the harmony. I think several of them originated from the apartheid period, but there were also new ones about the AIDS struggles. The singing always generated a feeling of togetherness, of involvement.

In this karaoke-crazy nation, I wonder why this form of vocal advocacy has not caught on.

Babé

Pharmanoia

This is a new word that has just entered the activists' vocabulary. Coined by Science writer Jon Cohen in an article "Pharmanoia: Coming to a clinical trial near you", he defined it as "the irrational fear and/or hatred of pharmaceutical companies and their products."

I don't fear Big Pharma. But sometimes I do hate them - and I don't think it's an irrational hate. One example:

Back in the early 90's, my partner (like most people with AIDS) was experiencing quite nasty candidiasis or thrush. The fungus had moved to his throat, and made swallowing very difficult. Like many, the only solution was an anti-fungal drug with the generic name of fluconazole, but marketed by Pfizer under the brand name Diflucan.

One several occasions, my partner need to take the 200mg tablet every day for two weeks or more. The price of each tablet was the equivalent of $10, so it cost at least $150 each time. We accepted that, although it did seem a bit steep; at least we could afford it, and we didn't know any better.

Now I do know better: GPO in Thailand make a generic version of fluconazole, which they market for ten cents a tablet. That's right, 1 percent of Pfizer's price (although I see that's now gone up to $16.33 in the US!).

I'm not against companies making a reasonable profit for their shareholders. But that level of profit? At the expense of poor patients? I'd call that worse than gouging.

To be fair, Pfizer did start a special access program to allow poor people to get the drug more cheaply. But it was so bound up by red tape that I have yet to hear of anybody actually benefitting from the program - all it did was to hold out false hope.

I don't like Pfizer. I think I have good reason not to like Pfizer. I have told them so on several occasions, not that they cared. But I don't think my dislike can be called "pharmanoia", because I think it is very rational.

Babé

Blocking the drug of choice

Last month I wrote about the increasing misuse of buprenorphine in Indonesia, by drug users who grind up the tablets, mix the powder with water and inject the resulting murky mix. Thus they not only continue to spread viruses through sharing needles, but also frequently suffer health problems as a result of putting lumps of buprenorphine into their bloodstream.

Because drug users have a habit of doing things like this, in many parts of the world plain buprenorphine is no longer sold. It is only approved in a fixed-dose combination with naloxone. Naloxone is usually used alone to bring people rapidly out of a opiate-induced overdose, by taking over the receptors in the brain which are occupied by the opiate. After an injection of naloxone, people with an overdose experience a very rapid and very painful withdrawal.

But naloxone only works if injected; it has no effect if swallowed. So if you inject buprenorphine mixed with naloxone, it has no sedating effect whatsoever, since as an opiate, it is blocked by the naloxone. But if the combined tablet is taken as it should be, under the tongue, the naloxone has no effect, and the buprenorphine does its job.

Now comes news that Schering-Plough, the supplier of buprenorphine in Indonesia under the brand name Subutex (the name all the drug users use), says it has decided to withdraw this from the market. It will be replaced by Suboxone, their name for the buprenophine/naloxone combination. Usually this combination is more expensive, but they say they will not increase the price.

Will this work? Drug users are notoriously tricky, and can often find their ways round barriers. Problem is (so they tell me), they don't inject for greater effect, or to get a better high, but because it's become a habit, I guess an addiction to needles. Schering-Plough say it's pretty difficult to separate the buprenorphine from the naloxone, but no doubt someone will try. And probably other manufacturers will jump in to replace the Subutex. But I fear those currently injecting buprenorphine will find something else. Still I guess we must welcome any reduction in injecting.

Babé

Task shifting

Back in 1996, when we first heard about the success of the new Highly Active Antiretroviral Therapy (HAART), I remember Suzana saying that if the heavens opened and the drugs rained down on us, we wouldn't be ready to use them. "It's not just a matter of money, it's human reasources," she said.

Now, more than ten years on, we're still learning the lesson. There're more and more reports that it's not lack of drugs that's the problem in the developing world, it's that the health systems just cannot cope. The WHO is promoting task shifting, proposing that some of the doctors duties could be done by nurses, and some of the load taken off nurses by community members, particularly people with HIV. But even though patients in Indonesia are lucky if they get to see their doctor for more than five minutes, the medical profession here seems to be in total opposition to the idea of task shifting. They ignore the fact that many puskesmas (community health centres) have no doctor, so the nurses are forced to prescribe.

And now comes news that Indonesia is planning to export 1000 nurses to Japan over the next year; the first 205 have just left. Of course, African countries have put up with this kind of 'brain drain' for years, but it seems new for Indonesia to be exporting other than servants and nannies. Of course, in many hospitals the nurses are viewed more as servants and nannies, so perhaps it's not so new. Let's hope they come back after a couple of years with new skills and understanding of what the real task of a nurse really is.

Babé

Starting is the hardest part

When to start antiretroviral therapy (ART)? This controversy dates back to David Ho's "hit early, hit hard" campaign soon after ART was first introduced in 1996. This was replaced by a very conservative approach, which basically said "wait until people are sick."

Now the various AIDS societies and government bodies in the West seem to be vying with each other to see how fast they can ease the starting criteria. (It's difficult to find the right words; they are lowering the threshold by raising the CD4 count at which ART should be started).

But the fact is that, even if the WHO - and the Indonesian Ministry of Health - move in the same direction, most people starting ART here will not be affected. Why? Because most continue to be diagnosed with HIV only after they fall sick with a serious opportunistic infection. They would meet almost any criteria for starting ART.

But this is not the only barrier. Even those who are aware of their infection earlier are often reluctant to start. They may be worried about side effects, or about sustainability of supplies of drugs, or continued commitment by the government to provide the treatment free-of-charge. But I think we often underestimate the mental block: starting ART is an admission of failure.

An admission that the virus is getting the better of us (we've been persuading ourselves that healthy living - or perhaps jamu - is going to keep it at bay); an acceptance that our lives are going to be controlled by our drugs (never leave home without them); and an acknowledgement that twice a day when we take our drugs, we'll be reminded that we're living with the virus (we've probably been trying to forget this for the last few years).

We're all great procrastinators, and we all hate to fail. This is another time when it's easy to delay a decision.

Babé

The first AIDS conference

The current bash in Mexico reminds me of a little bit of (almost forgotten) history - the first AIDS conference in Denver, Colorado. Held in June 1983, less than two years after the epidemic first became apparent, this was not an international conference, and was intended to focus only on science. But a group of activists living with AIDS (HIV wasn't yet discovered) thought different, and gate-crashed the conference to present what became known as the Denver Principles. The complete text of this declaration can be seen in this excellent Wikipedia article, but perhaps I can repeat the first part:

We condemn attempts to label us as ‘victims,’ a term which implies defeat, and we are only occasionally ‘patients,’ a term which implies passivity, helplessness, and dependence upon the care of others. We are ‘People With AIDS.’.

Sadly, this bit of our history is now becoming covered by the sands of time; it seems that few of today's people with HIV know what happened there in Denver 27 years ago. Even UNAIDS ignored this (as well as the Paris AIDS Declaration of 1994) when it published its '25 years of AIDS' timeline in 2006 - so much for their commitment to involvement of people with HIV!

Is our history only of interest to old fogies like me?

Babé

That Swiss statement

Once again it's in the news. I'm sure you're all aware of the gist of it: that someone with HIV who is adherent to antiretroviral therapy (ART) and has an undetectable amount of virus in the blood is basically very unlikely to transmit the virus to a partner via vaginal sex, as long as neither of them have genital infections, The Australians disagree, but frankly not by a whole load. Although I agree we must be careful about the message, there's a couple of points that rarely seem to get aired.

Dr. Ayie (who works with young mostly male HIV-infected drug users in Bogor) makes the point that this gives us a great tool to encourage adherence, as well as the urge to start ART. We can also use it to encourage both partners to avoid catching nasty sexually-transmitted bugs by using condoms at all other times.

When I meet with groups of people with HIV here, almost always the first question is 'how can I have children?' A surprising number have uninfected partners, and want to know how they can impregnate them without infecting them. We talk about timing sex without a condom at the time their partner is most fertile, but they often still worry about the risk of infecting her. The Swiss statement makes them much more comfortable.

As Eli puts it, "we should lay out the risks as accurately as we know how, and let people decide for themselves if the rewards of sex without a condom are worth the risk of becoming infected by a partner who is on appropriate and well-monitored treatment.' At worst, the Australians tell us a woman with an infected husband and having sex twice a week without a condom has a 425 in 10,000 chance of infection over ten years. The risk once or twice to make a baby is infinitesimally small.

This is really fantastic news for many kids here...

Babé

Mama Dora

One of the participants at the 2nd Indonesian Meeting of People Living with HIV in September 2001 was a Papuan woman from Merauke. Her name was Theodora, but everyone called her Mama Dora. At the meeting, she found that she was not alone, that her life still had meaning. She went back to Papua determined to speak out and make a real impact on the HIV epidemic in her home area, an epidemic that was then beginning to explode. With the skills and self-confidence she had received at the meeting, she soon became a very effective and compelling speaker, and within a few months, was well known around the province, with her picture appearing in several newspapers. She often accompanied the Vice-Governor when he spoke about AIDS in the province.

Sadly, in December 2001, Mama Dora fell sick. She died in January 2002 – an irreplaceable loss to the efforts to stem the tide of AIDS in Papua. Her friends and colleagues in Spiritia and nationally vowed to avoid a repeat of this loss. It was crucial that courageous activists such as she should receive the treatment that they needed to stay healthy. Thus was the Spiritia ARV Fund born.

It was not long before it was needed again. My colleague, Yuni, was hospitalised with PCP in early 2002, and her health just went from bad to worse. Not surprising: her CD4 count was only 17! Triple-combination antiretroviral therapy (ART) had then just become available in Indonesia, but the price was well over Rp 1 million a month - I forget the exchange rate then, but this must have been around $1,500 a year - far beyond the reach of a Spiritia activist.

Yuni had given up hope. After three months in hospital, fungus in her throat made it difficult for her even to drink, and she was just fed up with taking pills. She told me afterwards that there were two angels waiting for her in the corner of her ward. But finally we found the money for the ARV Fund to buy the drugs, and (after some resistance), persuaded her to start on ART. A week later she was out of hospital! Talk about Lazarus!

Yuni is still with us. Since then, she has missed only one dose, her CD4 count is in the 800's and her viral load is undetectable. She still works in Spiritia, now as a supervisor responsible for peer support groups in all provinces in Sulawesi, Papua, West Papua and Central Java. Quite a task!

With the help of Susan Paxton and a number of other private donors, the ARV Fund did its job, stimulating the start of ART in several areas - including in Merauke (I'll tell that story some other time). Now, with access to ART provided free-of-charge in Indonesia, the fund is no longer needed to buy drugs. It now supports early testing of infants born to HIV-positive mums, so the parents don't have to wait 18 months to know if their baby is infected. Hopefully soon that test will also be available free, though I'm sure other uses for the fund will appear.

But Mama Dora is still often in our thoughts.

Babé

Dying by numbers

Once again, UNAIDS has come up with new figures, and as always, everyone's taking potshots at them. The 'new' figures for Indonesia show an increase in 35% since the last (national) estimate carried out very rigorously in 2005. Were the UNAIDS figures a result of a similarly rigorous exercise? So far, nobody seems to know. But of course those responsible for the 2005 estimate won't easily accept the new figures. Why should we believe what these foreign 'experts' say?

Not being an epidemiologist, and caring more about people than figures (is that a cheap shot?), I can't comment on the validity of either set of figures. However, I do remember that a another set of experts in the late 1990's pooh-poohed the idea that Indonesia could ever face an epidemic of injecting drug use. One expert told me to keep quiet, because there was no evidence base for such an epidemic. And in any case, Indonesians don't like needles!

I'm also amused by the responses to the 40% increase in estimate of infections in the US. An 'expert' on the BBC has just questioned if this means that African estimates are also similarly low? I doubt it, but Indonesia?

No voices have been raised about the estimate of 8,700 deaths from AIDS in 2007. The national experts don't offer a similar figure, but given that they agree that almost 200,000 people are infected, this figure would seem reasonable. So far, since the start of the epidemic, a total of less that 2,500 deaths have been reported, with a reduction of seven over the last quarter (how can the number of deaths go down? OK, I know!). What seems clear is that more than 50,000 people have died of AIDS in Indonesia undiagnosed. How can so many mostly young people die unnoticed - and uncared?

Babé

Save Papua

The health situation in Papua is indeed dire. The HIV epidemic in the two provinces that make up the Indonesian part of Papua has now been acknowledged as 'generalized', with estimates that 2.4% of the adult population are infected. And of course, the population is equally badly affected by all the other health blights, including TB, malaria, and malnutrition.

When the scale of the HIV epidemic started to become apparent in the southern part of the province in the mid 1990's, donors descended on Merauke, the district capital, in droves. Among them, MSF-Belgium did a quite exemplary job, including nurturing a peer support group which continues to thrive. MSF also did a great job of addressing stigma (although they did make the mistake of translating the slogan 'AIDS can be treated' in a way which left the impression that it could be cured).

Most of the other agencies concentrated on prevention, and I'm sure they worked hard. But at least from the figures. I'm doubtful that they made a significant impact.

Now one of the local papers has reported that the Minister of Health has launched a "Save Papua" movement. The first step, which should have already started, is to send out teams of five people to each of the 3,200 villages in Papua. Their task will be to go door-to-door and collect blood samples from everybody in their village; I guess that'll amount to around one million samples. The Minister is quoted as saying that from these samples, they will be able to identify who is infected by HIV or malaria, and who has TB.

Wow! No small task! And no small money - estimates of the cost start at nearly $80 million!

But what is more worrying is what will happen to those found to be infected. As one activist has reported, even the AIDS referral hospitals in the coastal towns are overwhelmed and under-resourced to respond to the relatively small number cases that appear now. Health care facilities in the interior are much worse resourced. How will they cope? And what about stigma and discrimination? In most parts of the interior, illness is deemed to be caused by curse of God or by black magic - the concept of germs is totally alien.

There is no doubt that Papua urgently needs more effective responses. But some may question whether this is the best approach.

Babé

Safe fasting

We're now just a month away from the Muslim fasting month of Ramadhan. This usually brings a slew of questions about taking meds while fasting. I have to be a bit careful about discussing this: at a recent training session, one participant hailed from Aceh, a very conservative Muslim area. He became quite angry with me as a bule (foreigner, literally with white skin) pontificating about what he felt was purely a religious matter.

Hopefully the problem of taking ARVs during Ramadhan will disappear for most in the next couple of years, as once-daily regimens become available here. But at the moment, almost everyone is taking meds on a 12-hourly basis. As I've noted before, we do try to encourage them to see this 12-hour interval as important.

But during Ramadhan, those fasting should not eat or drink between dawn and dusk. In Indonesia, this means an interval of around 14-15 hours. If they join the fast, and take their meds at the pre-dawn meal (sahur) and then again when they break the fast, will they risk developing resistance?

As far as we have been able to find out, there's been no trials of this, although the University of Indonesia has promised to do a study. So we're back with empirics. What I tell people is that if they don't want to take any risks, better to stick to their normal schedule, and accept any sanctions due - my understanding is that there are rules regarding this. But many have never since their youth missed a day fasting during Ramadhan, and the feel it very important to join the fast. For those, we say that the first-line regimens in Indonesia are pretty forgiving, and they will probably be OK, particularly with the blessings of God.

Actually, to me the greatest risk is not during the fasting month, when the routine is clearly defined by sahur and fast-breaking, but returning to their 12-hour schedule when the fasting month is over. To make this worse, as many will know, the post-Ramadhan holiday (Lebaran) in Indonesia is characterised by a return to the village, to the family. The journey often takes 24 hours or more - plenty of opportunities for forgetting the doses. Then at home, probably many family members are not aware of their HIV-status, so they must take the drugs surreptitiously in the midst of the celebrations. Again, difficult to remember. And of course, once returned to the city, the previous routine has been totally lost, and must be recovered. A real risk...

We really do need more forgiving, once-daily meds.

Babé

Adult content?

It struck me as I re-read yesterday's post that some might consider it too explicit. Should I perhaps tick 'adult content' in the blog setting? By coincidence, yesterday I also translated a post from Elizabeth's blog and sent it on to our Indonesian language mail list, including of course the source: The Wisdom of Whores. When it arrived back in my in box, it had been marked as spam by my Internet service provider. It reminded me Elizabeth had told me that she had great difficulty getting people to link to her blog because its (great) name was often filtered.

As with Eli's blog, I'm sure the sort of people who would read this would not be upset. If you work in this field, you must be broadminded - and forget any previous prejudices. I recall when we were looking for people to attend our second meeting of people with HIV in 2001, we invited a very macho young man from a drug rehab centre in Bogor. Before accepting, he asked his boss if it would mean he would have to meet with waria (transsexuals). His boss told him that as an HIV-positive junkie, he could not afford to be choosy! And, yes, he did meet with waria, and yes, he found that they were human, just like him.

In some ways, HIV is a great leveller.

Babé

Colour scheme

I get quite a few funny questions, but I think my favourite so far has been:

"Is the colour of the sperm of an HIV-infected person different from normal? What is the colour of the sperm that comes out of the penis of an HIV sufferer? Is the semen of an HIV-sufferer also different from a normal person?"

Another questioner was also worried about colour:

"Will a person who has caught HIV have a penis with a different colour? What are the physical characteristics that can be seen on the penis of someone infected by HIV?"

I'll leave you to guess at my answers, but my tongue was firmly in my cheek!

Babé

Blood spots and politics

A couple of years back, a health department official calculated that every day around ten babies are probably born with HIV in Indonesia. We still don't find many - only a total 228 have been reported as at the latest report, although there has been a 12% increase in reported cases over the last quarter! But in my travels I'm hearing of more and more cases, although clearly most cases remain undetected and contribute to the overall 35/1000 infant mortality rate here.

Babies born to HIV-positive mums inherit the mother's antibodies, and so a standard HIV test (which looks for antibodies) will show a positive result until the mother's antibodies are lost, which can take up to 18 months. So we can't be sure if a baby is infected until the age of 18 months. As a result, antiretroviral therapy (ART) is often delayed 'until we can be sure'. The problem is that, if babies are infected, the chances are high that they will die before celebrating their first birthday. (Forgive me if you already know this!)

A recent trial in Africa found that HIV-infected babies should start ART as soon as possible after birth, even if they don't show any symptoms. So a better test is urgently needed.

At a meeting late last week, the same official said the government is developing a policy that all babies born by HIV-positive mums should be tested by PCR (which looks for the virus) soon after birth. If they are found to be infected, they should be started on ART immediately. Ah, but a PCR test here costs Rp 850 thousand (almost US$100) and there are few labs with the equipment needed. Who pays?

Currently Spiritia has limited funding for this purpose - probably only enough for another 20 or so kids. But a couple of years back, we discussed this with the kindly folks in Australia. They were developing a system which could provide a diagnosis based on dried blood spots (DBS). Basically (if I understand it right), you prick the babies heel, and sop up a drop of blood onto filter paper. This paper can then be sent through the normal mail to a lab able to carry out the test, at a cost much lower than the normal PCR. The Australians even offered to do the test for free if we could send the DBS. Easy, you'd think. No transport of hazardous blood, no need for a courier, low cost.

Ah, but we forgot the politics! As you may have heard, there's been a problem with samples of bird flu virus being sent overseas. As a result, there is strict control over sending any sort of samples to other countries. So although we could start yesterday, doing so would offend against the regulations. So the testing will have to be done in country. It'll start Real Soon Now!

Babé

A small victory

Among the many battles (I almost said 'crusades'!) that I have joined is that for free access to information about treatment for HIV. It's been a long time since someone coined the phrase "a drug is a chemical plus information", but it's still true, especially for the antiretrovirals that many of our friends are taking. There's a huge 'industry' (rightly) clamouring for improved access to these drugs. But I've often been amazed me that so few of my fellow activists understand that without information, these drugs can be useless or even dangerous.

Almost every day, there is 'news' about a new side effect, a new interaction, a new dosage, for these drugs. Where? Why, in the journals, of course! Want to read the article? If you're not a subscriber (cost: usually several hundred dollars a year), it'll cost you US$25 or more to read one article. Who in the developing world can afford that?

The prestigious journal 'AIDS' has just released a special issue, featuring "articles examining universal access to HIV/AIDS treatment...". There's a foreword by Jacob Gayle of the Ford Foundation, who writes, "I trust the details that are found within this publication might help us all to begin to think about not only the latest in the art and science of HIV action, but also allow us to reflect upon the kind of world we hope to engender, with the values and actions that promote the efforts we know are necessary for reinforcing the human rights and dignities afforded to us all."

Ironically, just to read Jacob's article would cost $35! But there's a happy ending. I was so upset, I immediately sent a rant to Meiwita Budiharsana who heads up Ford's office in Indonesia. She took this up with Jacob, and lo and behold, within 24 hours the articles appeared for free at the Community HIV/AIDS Mobilization Project (CHAMP) for the 2008 International AIDS Conference. Because it happened so fast, I guessed that this would have happened anyway, but no; Tom Coates from UCLA confirmed that my rant was indeed the trigger.

A small victory for free access. Thanks Meiwita!

Babé

Are you a 'case'?

For some reason which I've never fully understood, Indonesia was persuaded that people living with HIV (PLHIV) needed 'case managers'. I think it originated from the US paradigm that was then being pushed by one of our donors. Anyway, now we're stuck with them. We didn't even bother to change the name, calling them 'manajer kasus' (I'm sure even those who don't know Indonesian can work that out!).

In the US, with a huge variety of services available that patients may have difficulty in navigating, perhaps this task is needed. But here, where services are very limited, many of the 'case managers' I have met have been confused about what they are supposed to do - and many end up as 'gofers', both for hospital staff and for PLHIV.

But what upset many of us right from the start was that the name is totally unacceptable to empowered people. As one of my PLHIV colleagues insisted at a meeting with staff from the Ministry of Health today, she is most unhappy to be considered just as a 'case' and she certainly doesn't appreciate the idea that she should be 'managed'.

Sad that her point of view, widely supported by PLHIV here, seems to be ignored by a rather arrogant health service. I wonder why patients in the US put up with this?

Babé

Can't comment?

I've just been told that the Google bureaucracy makes it quite difficult for those without a Google ID to post a comment to my blog. So I've opened it up so that anyone should be able to add a comment. If anyone still has a problem, please let me know. And please DO post comments and let me know your thoughts!

Babé

Dr Love

The online version of the normally staid Indonesian daily, Kompas, offers "Dr. Love's Column", hosted by Dr Wei Siang Yu alias Dr Love. In his profile, Dr. Love notes that he works as "Medical Doctor, Medical Inventor, and Bio-techno-preneur," and his areas of expertise include "Reproductive Health, Sexual Health, and Bio-communication" (whatever that is!). Many of the questions answered in the column are mildly 'stimulating', for example from a 71-year-old who claims he masturbates every day (good for him!), and the women who, having had sex twice with different men on one night and is now pregnant, asks how she can decide who is the father. Since these are all outside my area of expertise, I'm sure the answers from our Bio-communicator are most appropriate.

But now there is a question from someone who had recently shared eating utensils during a meal with a friend who was later diagnosed with AIDS. He was very worried that he had become infected. Dr. Love's response? Most unlikely, as long as he didn't have any mouth sores.

If our experts in sexual health are so poorly informed, what hope have we for other doctors?

Babé

Jihad against AIDS

Several activists in Indonesia are supporting the idea of a 'Jihad against HIV/AIDS'. They seem unable to understand the suggestion from Syaiful Harahap, a veteran AIDS journalist, that although the idea might be great, it may perhaps be sensible not to talk of it as a 'jihad'. Mind you, I suppose we ought to have similar sensitivity when we refer to 'crusades'.

The amazing thing (to me) is that this great idea seems to have stemmed from a meeting of religious leaders in East Java organized by USAID|Health Policy Initiative (HPI). One of the participants is quoted as saying, "USAID has the money, while we have the human resources and network. This offers potential synergy for strategic cooperation to benefit the public."

I wonder how USAID views the idea of funding a jihad?

Babé

The Cure

About once a month I get a question from someone who has a friend who knows someone who was cured of HIV by a 'dukun' (Indonesian version of witchdoctor).

Takes me back to when my partner was in late stages of AIDS many years back. In those days, being open about one's status was not even thinkable, so no one except me was aware of his situation. But of course his friends knew he was very sick: 'cancer of the blood'.

Almost every Saturday, another friend would appear with either some dreadful concoction to be drunk (usually together with invocations) or with a dukun who would proceed to identify the cause. I vividly remember one occasion when said dukun went down to the garden, dug around a little and came up with a short length of barbed-wire which he said he had found buried. This clearly had been done by an (unidentified) person with a grudge, but now everything would be OK, and my partner would shortly recover. If it wasn't so serious, I'd have had difficulty not laughing out loud!

Anyway, back to the current dukuns. They of course claim that after their treatment, the patient has seroreverted (of course they don't use that term, just say he is now HIV-negative). Oh yeh? They clearly haven't heard of antibodies, and the fact that the HIV test looks for them. Antibodies last for a long time (we usually say for life, but we may be stretching it a bit), and it's most unlikely that the dukun's treatment would not only purge the virus but also remove all traces of the infection, including the antibodies, So, by claiming seroreversion, in my book they are branding themselves liars. They do really need to learn a bit more.

Of course, we always say that if a cure was really found, the whole world would be beating a path to their door. In my more depressed moments, I have nightmares that that might not be the case, and that when a cure is found, it might be hushed up to protect the profits of Big Pharma. Please God this is only a nightmare!

Babé

If in doubt, blame the virus!

If the overworked and undertrained doctors in AIDS referral hospitals in Indonesia are confused by symptoms, some of them take the easy way out: "you have HIV, that's normal." Let me give an example from a few years back.

A young man with HIV (let's call him Robby) but still with a high CD4 count (showing that his immune system had not yet been badly damaged by HIV) collared me one evening. "I've been suffering from mild diarrhoea for months; not really bad, but I have to poop two or three times a day. I reported this to my doctor several times, but he just tells me, 'with HIV, you must expect that sort of thing.'" I told Robby he must be firmer with his doctor; HIV rarely causes diarrhoea, particularly at high CD4 counts. It should be possible to find (and treat) the real cause.

Robby agreed but (like so many of our friends), once in front of the doctor, his courage left him, and he reverted to the normal 'yea, Doc' form of communication. However, I ran into him a couple of months later. He had visited Bangkok for a meeting, and had taken the opportunity to have a thorough check-up by an HIV doctor there. The result? Worms! A dose of Combantrin and the diarrhoea was gone.

Cause and effect: always dangerous ground...

Babé

Losing essential assets

Probably you all know that one common side-effect of some anti-HIV drugs is called lipoatrophy. This basically means loss of fat. Perhaps you'd think that that would be a welcome side effect, but sadly it doesn't affect the stomach; in fact a related side effect sometimes called lipohytrophy has the reverse effect: adding fat to the stomach, the breasts and sometimes causing a buffalo hump. Not much is really known about how this occurs, or even which drugs are causing it. But it's becoming clearer that d4T (stavudine) is most to blame, usually after about a year's use.

It is not clear if lipoatrophy has a clinical impact. But for those it affects, it is a real psychological problem. Last year I met with a group of young women at a meeting of the Indonesian Network of Positive Women (IPPI). For several, their biggest complaint was the reduction of the size of their butts (Indonesian women tend to have more attractive rear ends than some of those you see waddling along the streets of the Western world). One of them told me that she had lost her assets.

As I say, there's no obvious solution. However it is clear that people should not be taking d4T for more than 9-12 months. And there are alternatives here. But it's sometimes difficult to get doctors to treat this seriously, and support a change in the drug combination.

Babé

Adherence? 101%!

They got married not so long ago, both HIV-positive. One night while in the middle of doing what newly married couples tend to do, her husband withdrew, saying it was time for him to take his drugs.

Now that's adherence! Mind you, not so much fun for her!

Babé

Liver problems

Since most of the people with HIV (PLHIV) I meet were infected through sharing needles, most of them are co-infected with hepatitis B and/or C (HBV/HCV). These nasty viruses, which are spread in much the same way as HIV, usually take longer to cause problems. Before antiretroviral therapy (ART) became widely available, most people died of AIDS before hepatitis made itself felt. But now, thanks to ART, they are living long enough to start worrying about surviving their other virus(es).

We've done quite a good job of providing treatment for HIV, but we're a long way behind on drugs for HBV and HCV. I'll talk some other time about hepatitis B, but for hepatitis C, the picture is awful.

First, cost. As one liver doctor here told Anne Mijch, to diagnose hepatitis C costs the same as buying a motorbike; to treat hepatitis C costs the same as buying a car. (From the Jakarta roads, seems like every Indonesian can afford a motorbike - and all of them are riding them at the same time!). The side effects of treatment are also horrible - and last for the full year of treatment. And at the end of all that, if you're co-infected you'll be very lucky to be cured - the chances are less than 30%.

Of course, for treatment at that price, there's no shortage of people touting it. And of course they don't dwell too much (at all?) on either the lousy side effects or the lousy cure rate.

But for most, treatment for hepatitis C is only a dream. We try to tell them that they're lucky, because better and cheaper and easier to tolerate drugs may appear in time. But at the moment this is also an empty dream; there's no end of candidates, but few that offer much real hope in the next ten years.

Because most of the folk we support were infected in the last five or six years, we aren't yet feeling the effects. I'm scared that in around five years time, it's going to be like we're back in the pre-ART days, with people dying of liver failure instead of other opportunistic infections. Of course, they may die of a motorcycle accident before that!

Babé

Drug of choice?

While in Surabaya, I heard that heroin (putaw) is no longer the drug of choice; it has been replaced by buprenorphine/Subutex. This legal drug is now being prescribed by many doctors. Buprenorphine is a synthetic opiate which is produced in pill form and should be dissolved under the tongue. So it doesn't have to be injected, and because it's legal, it doesn't trigger crime. And because its manufactured by Good Manufacturing Practices, its quality and dose is predictable.

Good news, you'd think. But the bad news is that many users grind up the pills, dissolve the powder in water then inject it - just like they did with putaw. The experts tell us that people don't inject just to get a quicker high, but because it becomes part of the habit - part of life, I guess. So although perhaps we're reducing crime, and indeed reducing costs to users (although buprenorphine is not cheap), we're not reducing the HIV infection risk.

In addition, buprenorphine doesn't dissolve in water. So the resulting suspension contains solid particles of buprenorphine, whose size depends on the effort put into grinding it up. A user in sakaw (withdrawal) is usually not very concerned with such niceties. Result is that an increasing number are suffering abscesses and other health problems from putting lumps of buprenorphine into their blood stream.

Buprenorphine 'competes' with methadone as opiate substitution therapy. But in Indonesia, there's really no competition. Although methadone is cheaper, it is only offered in a (still) relatively small number of designated clinics, usually only open in the morning. And the staff monitor its use. Buprenorphine, on the other hand, is available in most pharmacies, and if they require a prescription, that's easy! There's a doctor on the spot. And nobody cares how you use it.

Of course, all this was eminently predictable - and predicted, among others by Dr Erwin Wijono, the founder of the Jakarta Drug Dependency Hospital in the 1970's, and thus the 'father' of drug treatment in Indonesia. One day I'll write the history of how we got here.

Babé

Avoid Singapore

Yet another case of a person living with HIV (PLHIV) from Indonesia deported from Singapore! Although for some reason, Singapore doesn't appear on lists of PLHIV-unfriendly states (like the US and Saudi Arabia), in fact it is some ways worse than these.

Let's be clear: if a non-Singaporean citizen is diagnosed HIV positive in Singapore, this must be reported, and the person concerned will be swiftly deported. And if he or she tries to enter Singapore ever again, even as a tourist, he or she will be put on the next plane out. And don't take chances with the Singapore Immigration database; its foolproof.

Of course, this can be a real bind. Singapore is a regional hub, and many multinationals have their regional offices there. I know of at least two cases of up-and-coming Indonesians whose career has been cut short because they can't even visit the regional office, let alone work there.

Moral: if you are a non-citizen, don't even think of having an HIV test in Singapore. And if you are HIV positive (or suspect you may be), forget the idea of going to Singapore for the high-class hospital treatment offered. Better off going to Bangkok.

Babé

The questions that get asked!

As perhaps you know, we host a QA forum on our web site, intended to answer questions about care, support and treatment for PLHIV in Indonesia. Since we get two or three questions a day, and sometimes as many as nine or ten, this keeps me quite busy.

We tell people that this forum is not intended to respond to 'Am I infected?' questions. However, since apparently there are no QA forums to answer this type of question, around 30% are like this. Usually I just delete them; although they do indeed need answers, I don't have the capability and knowledge (and - often - patience!) to answer them properly.

Again and again, people ask about the probability that they will be infected from one or another type of risky activity - almost always the first time they've ever done it, and also 'before God, the last time' (believe that if you will!). How they are going to interpret a probability of (say) 0,5% and determine what it means in their case, Lord alone knows.

Sometime the questions are even more curious - or downright biased. Take for example a question I got today:

"Have there been any studies to determine what percentage of HIV-positive women want to infect others? If there have been, please let me know the statistics."

Now, what sort of person would ask a question like that? How on earth would you do such a study. "Oh, by the way, Miss X, do you intend to infect other people?" Duuh!

But then, I'm not an epidemiologist, Perhaps this is the sort or question they do ask? Eli, are you listening?


Babé

Adherence? 100%!

Just back from another three-day Treatment Educator course in Surabaya, with 16 participants, all but one on antiretroviral therapy (ART).

One of the main objectives of such training is to encourage adherence to ART. With an increasing number of people living with HIV (PLHIV) in Indonesia starting ART provided free by the government (with some help from the Global Fund), this is clearly important.

In our session, we use the 'standard' slide from the 2000 Ann Intern Med study, which shows that only 80% of those with more than 95% adherence achieve an undetectable viral load. We use this to demonstrate that the aim must be to avoid missing any doses. Of course, we all know that newer non-nucleoside-based regimens are more forgiving, but why take chances?

Sometimes overseas activists criticise us for pressing for impossibly high standards, telling us that 100% is not achievable. They are wrong! An increasing number of PLHIV in Indonesia are 'celebrating' several years on ART, having missed no more than one or two doses in that time: 100% as near as dammit!

On the other side of the coin, Indonesians are natural hagglers. If we say that missing one dose a month is OK, the immediate response tends to be: 'two?' And so on. Much safer to insist on none.

So please, you 'foreign experts', don't confuse us by telling us that missing a couple of doses a month is OK. We know you're probably right, but there's method in our madness, and again, why take chances?

Babé

Marriage: A Risk Factor for HIV?

This morning while browsing an article with that title caught my eye. It was about South Africa, but in my experience reflects reality in Indonesia. It seems that almost all of the women with HIV I meet were infected by their husband or partner. Often they only find out that they are infected after their partner dies and the cause of death is found to be HIV. Usually this is a result of earlier injecting drug use that the female partner may not even have known about. The women is then tested: positive. Often a baby is also tested: positive. By coincidence, Prof Samsu answered a question from such a women in his weekly QA column in the Kompas daily today.

Of course, the result is not always quite as bad. Again, by coincidence, a posting appeared this morning in the sharing forum on our web site. This women lost her husband two years ago; the cause was again only identified after death. She and her child were subsequently tested and found negative. Sadly, as is often the case, it appears she was not properly informed, and is still not convinced that she and her child are uninfected, even though she has been retested since with the same (negative) result.

Her shame has prevented her from seeking support, together with information she can trust. I hope my reply to her cry for help will assist her to overcome her fear - and her shame.

Since Spiritia was set up by Suzana, we have always felt that those affected by HIV have an equal - or greater - need for peer support as those infected. Sadly many of the international activists pressing for greater involvement of people living with HIV (GIPA) ignore the needs of such people. One such recently told me that he 'never came across an organisation for people affected by HIV' (in fact there are several in Indonesia), and quite clearly could see no need for such. Seems to me that ignoring or sidelining the negative partners of positive people is not only inhumane, but also overlooks an incredible resource.

GIPA originally included both infected and affected. It will be a pity if we allow it to become exclusive.

Babé

Hello. World!

I've never been much of a diarist, and I've resisted starting a blog because it seemed to me that, with so many blogs, who could possibly want to read one more? But it struck me the other day that most of what we do is in Indonesian, and few people who don't speak the language would have any idea of what we in Spiritia are actually doing - and the adventures we have.

So in this blog, I'll try to report the interesting occurrences that I experience in my daily efforts to support the (mostly young people) with HIV in Indonesia. For the most of you who don't know who or what is Spiritia, you can browse to the English version of our web site, which includes a brief profile and some information about AIDS in Indonesia.

Basically, Spiritia is the Indonesian national peer support organization for people living with and affected by HIV or PLHIV. We support and work with more than 200 peer support groups for PLHIV around this huge and extensive country. Most people don't know much about Indonesia; it stretches from East to West over three time zones, a distance equivalent to New York to Los Angeles, or from Ankara to Belfast. With 17,000 islands, you'll understand that it offers many challenges in getting around. Although I live on the outskirts of Jakarta, I spend a good proportion of my time travelling, much of it on aeroplanes of the much-vilified (with some reason) Indonesian airlines, but also sometimes on the even more disorganised railways and sometimes on a variety of usually overloaded and terribly maintained boats. Sometimes it means staying in some less than salubrious hotels. It would be easy to let all this stress one out, so the solution we have developed is to view it all as an adventure, hence the blog title.

Not every day brings an adventure, so this blog won't just be a diary. When I'm short of material, I'll try to dredge up some interesting tale from the past - I've been supporting people with HIV in Indonesia since 1991, so there's no shortage, as long as my fallable memory holds out.