Everyone confesses in the abstract

It's been a hectic week! We were asked by UNAIDS here to run three courses on preparing and submitting abstracts to the 9th International Congress on AIDS in Asia and the Pacific (ICAAP). Actually, UNAIDS is only funding; the ICAAP Local Organising Committee (LOC) is responsible for selection of the 150 participants, drawn from seven key groups: drug users; gay, lesbian, bisex and transex (LGBT); women; inter-faith; PLHIV; youth; and sex workers.

Monday and Tuesday we ran the first course. Unfortunately, it quickly became clear that the selection had not been over successful in eliminating candidates who had really had very little of interest or value to present at the Congress. With only four mentors, it was quite a task to help and encourage all the participants to think of an interesting topic and commit it to paper. And of course, few were capable finally to translate the result into English, even more within the 200 word limitation. Google Translate came to our rescue for that; although the result is far from perfect (and sometimes quite amusing!), several of us found it did save time in preparing a first draft.

We heard a lot of stories, some of which I may report here later. Some were indeed only confessions or sharing. But in the end, the majority were able to submit their abstracts on-line (what a change this has made!), and although I suspect some will confuse the reviewers, others will definitely offer a broader community view. I guess if perhaps three quarters of the participants benefit, and half of those have abstracts accepted, it'll have been useful.

The next course, also in Jakarta, is planned for next week, although we still don't have a final list of participants. I'm always amazed at our ability to arrange flights for a large number of people from all over the country at very short notice; pity our poor travel agent!

The rest of the week was spent on prisons; more on that tomorrow...

Babé

An informed community is a strong community

There's no doubt that the anti-HIV drugs that have been available in Indonesia for several years now have made an immense difference in our community. It used to be that six months or a year after we held any meeting, at least one third of the participants had died. Continuity was almost impossible, because the faces were always changing.

Now it's very different. In some cases, meetings have become 'same old, same old', almost no new faces, just the 'old guard', who are indeed growing older - and broader round the waist!

But how long will this last? There are a number of red flags. Perhaps the greatest threat will be caused by the high prevalence of viral hepatitis co-infection among those with HIV in Indonesia - I'll return to this some other time.

The other red flag should be more controllable: poor adherence to antiretroviral therapy (ART) and high dropout rates - at the last official report, over 10%. I'm frequently told that adherence is being monitored and is high, but I see few signs of effective monitoring, but more signs that adherence is beginning to drop. Why?

Of course, there are many reasons. But among them are lack of information and inadequate community involvement. With these two points in mind, we place considerable emphasis on what we call 'treatment educator training.' This is carried out mainly by the community for members of peer support groups. I've just carried out such training in Jogjakarta, with 15 participants from five groups. In this basic three to four day course, we talk about how HIV replicates, how ART inhibits this replication, why resistance to the drugs occurs, and how this can be prevented by adherence of more than 95%. We also discuss our role in informing our community and helping those on treatment to achieve, and more important, to sustain this high rate of adherence.

It is accepted here that doctors have at most five to ten minutes per patient. Clearly this offers no time to address adherence, let alone to assess its level. In any case, this task is probably best carried out by the peers, who are themselves on therapy. So ensuring that this community are informed is crucial...

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

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