Friday, 29 August 2008

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?


Thursday, 28 August 2008

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!


Wednesday, 27 August 2008

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.


Tuesday, 26 August 2008

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.


Monday, 25 August 2008

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.


Sunday, 24 August 2008

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!


Friday, 22 August 2008

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.


Wednesday, 20 August 2008

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.


Tuesday, 19 August 2008

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.


Monday, 18 August 2008

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...


Sunday, 17 August 2008

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.


Saturday, 16 August 2008

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.


Friday, 15 August 2008

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.


Thursday, 14 August 2008

...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.


Wednesday, 13 August 2008

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?


Tuesday, 12 August 2008

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.


Monday, 11 August 2008


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.


Saturday, 9 August 2008

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.


Friday, 8 August 2008

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.


Thursday, 7 August 2008

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.


Wednesday, 6 August 2008

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?


Tuesday, 5 August 2008

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...


Monday, 4 August 2008

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.


Sunday, 3 August 2008

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?


Friday, 1 August 2008

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.