A victim without murmuring

I've written before about the Denver Principles, proclaimed by a group of HIV-positive activists in 1983 at the first AIDS conference. I noted then the preamble to the declaration, which noted:

We condemn attempts to label us as ‘victims,’ a term which implies defeat...

Yet 25 years later, some of us are quite happy to be given that label - at least the Indonesian language equivalent, "korban' (which also means 'sacrifice' as in a religious offering). A year or so back, a group of people living with HIV demonstrated at the Hotel Indonesia circus in Jakarta (the favourite place for such activities) wearing T-shirts proclaiming themselves to be 'AIDS victims'.

I personally feel even more strongly than those early activists that the term is totally inappropriate - and almost dangerous. Because it suggests that we have no control over what happens to us, that it is all the fault of someone else. Perhaps for some (clearly for babies), this may be true, but does it help to spend the rest of your life blaming others?

It sort of raises the question: for how long is an 'accident victim' a victim? For life? Even if they suffer disability, surely there must be a limit to how long they consider themselves victims? Most are able to get over it and get on with their lives; why not people with HIV?

Is this different for drug users? They have formed the Indonesian Drug Victims Network. Partly this is to avoid being considered criminals; the law is thought to treat victims more humanely. But does that mean they have to be victims all their lives?

There must be a 'statute of limitations' for victims...

Babé

A bridge too far

Are the antiretrovirals (ARV) produced in Indonesia equal to the imported ones? This question is often asked in the various forums and during meetings with people with HIV here. I have usually answered that the generic drugs industry in Indonesia is said to have a good reputation, that the Indonesian Food and Drug Administration (BPOM) is said to do a good job of monitoring the industry, and anyway, 'the proof of the pudding is in the eating': my friend Yuni has been on locally-produced ARVs for almost seven years now, with a CD4 rise from 17 to more than 800, and a consistently undetectable viral load. In addition, it seems that all of the ingredients are imported from standard sources (in China?), and are only assembled and packaged here.

But now I'm not so sure. The headline in today's Jakarta Post says it all: "Consumers warned of ‘substandard’ generic drugs." The article even specifically refers to Kimia Farma (KF, the producer of the generic ARVs here) - although it is not clear that there is any specific concern with that company.

Actually. a presentation "Generics: access, efficacy and quality" by Andrew Hill from Liverpool University at the recent HIVNAT Symposium in Bangkok has already raised worries in my mind. Andrew raised the concept of "PK bridging", which is used to "prove" that generics are in every way equivalent to the original drug. There is a 'gold standard PK bridge' (picture of the Golden Gate), that is employed by reputable companies. There are 'other forms of PK bridging" (picture of rickety footbridge) that are 'much less stable." Several elements of this bridge should raise red flags. For example, unpublished trials - I have yet to see any data about trials by KF. And why are they not WHO approved - do KF practices meet the standards? Where can we get answers to these questions?

Sometimes I'm scared to dig too deep...

Babé

A distant voice in the darkness

I have on several occasions referred to the longer-term threats to survival which face many people with AIDS in Indonesia. Perhaps the greatest threat will be caused by the high prevalence of viral hepatitis co-infection among those with HIV in Indonesia - probably as high as 50%. The effects of this co-infection will start to be felt early in the next decade, given the longer 'latency' of viral hepatitis.

Whereas there is an increasing number of treatments for HIV, treatment for hepatitis C seems to be stuck in a time warp, with still only two drugs available, both of which must used together, at unaffordable cost, with excruciating side effects, and having a very low success rate - less than 30% among co-infected people. But without this treatment, they will start to suffer liver failure, which (without liver transplants - again rarely accessible) will be fatal. It'll be like we're back in the 90's.

There are estimated to be more than 170 million people with chronic hepatitis C infection around the world, significantly more than the number living with HIV. So why do we only have two awful drugs to treat a curable disease, while we have more than 20 for HIV? Part of the reason is that the hepatitis C virus was identified several years after HIV.

But it is difficult not to draw the conclusion that there hasn't been the pressure. Prof Joep Lange, in his closing presentation at the recent HIV-NAT Symposium, made the point that we were very lucky that the HIV epidemic first became apparent among gays in America. If it had appeared as an affliction of poor black people in Africa, would there have been the same pressure to discover new drugs, to determine the cause. Surely, not! The parallel with hepatitis C is obvious.

Of course, there is a significant number of people with hepatitis C in the West. But they are not a homogenous group; indeed, many of them are 'junkies' (since hepatitis C spreads among injecting drug users in the same way as HIV, just ten times more easily - 90% of such drug users in Indonesia have hepatitis C). But also people are not (yet) dropping dead with the disease, and particularly not at such an early age as they did in the early 80's with HIV.

The message is clear: we need much, much more activism to press for development of new drugs - and a vaccine - for hepatitis C infection. Sadly the voices are very muted.

Babé

The test of any man lies in action

I've written before - and I'm sure I'll write again - about the figures, So often we read the reports, we see that figures, but we don't think much about what the figures mean. We all know that 'mortality' means real people dying, but in reports it can become just another statistic.

I've just been working on the final draft of our annual report. Among others, we generally comment on the fact that only a small proportion of people with HIV infection in Indonesia are aware of it. There seems to be agreement that the total number of people living with HIV in Indonesia is around 270,000 - I think that's a low estimate, but let's accept it for the moment. The last annual statistics from the Ministry of Health note that less than 5,500 new cases of HIV infection were reported last year. So I did a little calculation: at that rate, it'll take us 50 years to identify all the current cases. Of course, most of them will have died by then, but...

OK, the reported case numbers are notoriously low. Figures from the provinces are usually at least twice those reported nationally (ask why?). But even if we assume we're finding 10,000 cases a year, it'll still take us more than 25 years to find them all.

There's been priority given to scaling up voluntary counselling and testing (VCT) over the last couple of years, with massive injection of Global Fund money. So what have we achieved? A 30% increased in case detection over the last two years! Gee!

'We' regularly discuss (or argue about) introducing provider initiated counselling and testing (PICT), with opt-out. 'We' are not sure what that means, but are scared that it will violate human rights. Fact is that probably a majority of the 5,500 cases reported last year were identified among in-patients in hospitals; the symptoms suggested AIDS-related infection, the history suggested possible risk, the doctor (finally) connected the dots, and the patient was referred to the VCT clinic. That sounds to me like provider initiated testing, no? So what's the problem?

Well, the problem is that the doctor in his office does not connect the dots - how can he (or she) in five minutes consultation? Thus the whole argument seems moot to me: PICT is already happening in hospitals and is not feasible in out-patient practice.

So do we just wait 25 years? With people are getting infected MUCH faster than we're identifying them...

Babé

...sick and full of burning

One of the ever-present side-effects of working in the AIDS field is burn-out. I guess we've all experienced it, to a greater or lesser extent. Of course it hits the health care workers most heavily, as Theo Smart of aidsmap has identified in a recent issue of the HATIP (HIV/AIDS Treatment in Practice) newsletter, Caring for the caregivers in the face of HIV and TB. As Theo notes, there is a conception that things have become easier now we have antiretroviral therapy (ART). In theory this means that the hopelessness and helplessness has reduced, and people are not dying in the same numbers. As I've mentioned before, we've certainly seen that here, but... People are still presenting at a very late stage, when even the 'Lazarus' effect of ART cannot be guaranteed. And with the increase in shear numbers of those infected, while the percentage of deaths has fallen dramatically, the absolute numbers still remain awful.

In addition, for those who benefit from the Lazarus effect, there is the ever-present fear of what is called Immune Constitution Inflammatory Syndrome (IRIS), or what the TB old-timers called the Paradoxical Reaction. This appears as a sudden worsening of symptoms in someone who has started ART with a very damaged immune system. In that situation, the immune system has lost its ability to generate a reaction to infection. We often see people with CD4 counts (which measure the state of the immune system) in the single figures who are still apparently relatively healthy.

But after they start therapy, the immune system starts to recover, and often immediately starts to react to the 'hidden' infections. You may imagine the trauma when someone who feels relatively fine starts treatment and goes blind. Yes, that happens; I've seen it twice, a result of a hidden CMV infection which wrecks the retina.

No, ART has not solved all the problems, and has certainly not removed all the stresses which are faced by health care staff and community supporters.

We've just be translating that article by Theo. The first problem we faced is that there really is no translation for 'burn out.' The usual term used, 'jenuh', has more of a connotation of 'worn out', even though the dictionary does say it means 'sick and tired'. Theo also reports a doctor saying that nurses are unable to share their fears with their partners, ‘because they freak out completely’, A serious problem, but at least we had some laughs trying to translate that term!

Even in English, I think the term 'burn out' has become devalued. Back when, we used to talk of a nervous breakdown; I guess that term is no longer politically correct, but it certainly seems to fit what I felt at one stage, and what one of my close friends seems to be experiencing right now. And I guess if we go back a bit further (before my time, Dear!), the shell-shock experienced in the trenches in the First World War had a similar cause.

As Theo notes, "Clearly much more needs to be done to keep our healthcare workers healthy, happy and productive members of the health system." And the same is true of the community members working as buddies, counsellors and case managers, who often lack even the meager institutional support that the nurses get.

Babé

Money is like muck, not good except it be spread

Probably all of you have seen Lucy Williamson's report Tackling Indonesia's HIV spread on the BBC web site. Lucy has been doing a lot of research for her articles about HIV here, including meeting with us collectively at Spiritia, and separate meetings with several of us - thanks for the lunch, Lucy!

Lucy refers to 72 districts. I assume that is the number that will be supported by the new Global Fund project. But there are in fact more than 450 districts and municipalities in 33 provinces in Indonesia. Most provinces are as big as a country elsewhere. But the big problem with the decentralization that Lucy refers to is that it didn't devolve autonomy to the provinces, but directly two levels down to the districts. This leaves the provinces with a less than clear role. Worse, it often seems to add an insulating layer between the national policies and the local implementation.

Some districts are indeed acting as role models. For instance, Jembrana in the north-west of Bali (off the tourist - and tourist dollar - track) has managed to provide free health and education to all. It has also set up an amazing computer network, to which all government offices and services are connected. If Jembrana can do it, why not others?

As the article notes, the huge Global Fund grant will support responses in less than half of the provinces, and less than a quarter of the districts. Yes, it covers the notorious 'hot-spots', and (as Bob Magnani of FHI notes) that focus is essential for effective prevention. But for treatment? How do we tell people with HIV in the other provinces, sorry, you'll be looked after when (if) the next Global Fund Round clicks in. In the meantime, well, be patient - and try to survive. I fear we are further extending the inequities that already exist - clearly urban dwellers with HIV are better served than those in the villages.

I agree that the resources are spread very thinly. But I still do not understand why countries like Malawi can scale-up access to antiretroviral therapy so much more successfully than Indonesia.

BTW, following up on my post of a couple of days back (Stand by to crash), I had good news. Radnet managed to recover all the data from the failed hard disk, and our web site was back up yesterday afternoon, without any effort by me (other than pulling what remains of my hair out!). Now to ensure that proper backups are done...

Babé

We cannot escape history

How important is history? There has been a debate about this over the last few days. On our web site, we have included a History of AIDS in Indonesia, based on the History pages on the Avert web site (which we have also translated).

In Indonesia, our report says that the history starts in 1983. It was then that Dr. Zubairi returned from post-graduate training in Paris where he worked under Prof. Mathe at the Institute of Cancer and Immunogenetics at the Paul Brosse Hospital. His task there was to learn about the immune system, and specifically about the sub-population of lymphocytes (white blood cells). This clearly awakened his interest in the newly identified syndrome just renamed AIDS. So on his return, he sought out any evidence that AIDS might have entered Indonesia.

Some may recall that the syndrome had first been identified in 1981 among gays in the US, although at that time the cause was not known. It was surmised that it was in some way connected with sex between men and men, so it was initially called Gay-related Immune Deficiency, or GRID, It was only in mid-1982 that it became apparent that it affected other groups, and so the name AIDS was coined. However, it was still seen as predominantly a disease of men who have sex with men (MSM).

So it was perhaps natural that Dr. Zubairi should search out a group of waria to test. Among MSM, waria were perhaps the easiest to find in Jakarta; the gay life was not particularly well-defined then. So he collected a group of 30 waria from Taman Lawang in Jakarta, still (I believe) their favourite stomping ground (if that's the right term!). He examined blood samples from the 30 in the lab at the central hospital. On the basis of symptoms and their low CD4 counts, he deduced that two of them had AIDS. Of course, at that time a definitive test was not yet available,

Were those the first identified cases of HIV infection in Indonesia? Clearly the Ministry of Health don't agree, since they always refer to the First Case as the 'notorious' Dutch tourist who died in Bali in 1987. But Dr. Zubairi is pretty convinced, although of course he cannot prove it.

This has just become an 'issue' (as things do in Indonesia) because a representative of a gay group has implicitly criticised Dr. Zubairi for picking on a group of waria, considering it to be discrimination. Why, he asks, didn't he pick on other groups? Clearly he was not aware of the history.

In responding, Dr. Zubairi made the point that what is more important now is to discuss how we can work together to address the challenges of HIV and AIDS in Indonesia. While I agree to a certain extent, I always remember the axiom in the subject...

Babé