Hell that tests my youth

My posting yesterday reminded me that the age of consent is a continuing problem here. There is no clear definition of this age here, since a number of different laws provide different ages. I think there seems to be a consensus that in general it's 18 years for a woman and 21 for a man. But this applies to marriage (I think) and not clearly to medical decisions.

Many health care providers assume someone is 'under-age' if they are still dependent upon their parents - and if the parents are paying, this means the patient is still dependent. I recall meeting with a 27 year old woman together with her father and mother. She had been HIV-tested and was starting antiretroviral therapy - and had taken no part at all in making the decisions around this. Because the parents were paying.

I'm always amazed that 'we' continually urge that HIV-testing is dependent upon informed consent, yet we ignore the 'elephant in the corner', the fact that many of those who should be tested are considered unable to consent, because they are under age. "Want to get tested for HIV (or a sexually transmitted infection)? Go get your parents consent first." Duh!

At the last count, almost 500 of the 16,000 people reported as infected with HIV in Indonesia were aged 15-19. How many more would test if they were offered friendly and hassle-free services? Certainly their lack must have an impact.

The Thais have recently woken up to this, as recently reported in the Bangkok Post. But even they acknowledge that they need many new clinics to provide this service.

Why do we continue to turn a blind eye to this problem?

Babé

God screens us evermore

There's been much uninformed discussion regarding Provider-Initiated Testing and Counselling (PITC - or is it PICT?) here. Nobody seems willing to come up with a clear definition of what we mean by this, let alone achieving a consensus on how it might be implemented. But it is abundantly clear (as I have written before) that the current practice of VCT will take more than 25 years to identify those who are infected today.

It's clear as well that most of the HIV testing taking place in hospitals in effectively provider-initiated. A sick patient is admitted; the doctor (finally) suspects an opportunistic infection, the patient admits previous risk behaviour, so the patient gets referred for VCT, perhaps getting counselling, perhaps just having blood taken in the same way as for other tests. So effectively we wait until the person falls sick, often with a badly damaged immune system, before we diagnose the underlying condition.

Several WHO experts have proposed annual universal testing of all people over the age of 15 years for HIV. This is clearly not yet feasible, and thus has often been rejected. But the fact is that we must find a better way to identify the 95% of people infected with HIV here before they fall sick with very nasty conditions.

The military have it easier, A report on the Indonesian armed forces web site recently described mass testing of a Marine unit. Unfortunately the article is peppered with so many military acronyms, it's a little difficult to understand, but this photo helps. The article refers to 'early detection through Blood Screening Tests', but it does appear that it is not 'unlinked-anonymous' - as if that would be possible in the military! It also reports that the 'marines welcomed the blood-letting enthusiastically, proved by the attendance of all ranks of the unit.' Does that mean it was not in fact compulsory? Only obligatory, perhaps.

Let's hope that those diagnosed with HIV remain enthusiastic. The military is now trying to come to grips with HIV, and total isolation inflicted on 16 members of the peacekeeping force returning Cambodia with HIV in the 90's is hopefully a thing of the past. But HIV-positive soldiers are still often removed from active service, generally posted to the medical corps, where they while away their days. But at least they now get treatment.

The Marines say their top brass now give great attention to HIV, including with 'Peer Leader HIV Training'. So far no reports of formation of peer support groups for marines known to be HIV-positive. Maybe we need to take more initiative...

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

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

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

...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