Sunday, 12 April 2009

Long choosing, and beginning late

So how can we do a better job of getting people onto life-saving antiretroviral therapy (ART) sooner, before they fall sick, and risk death as a result? I do have one or two ideas, Tom, if not solutions.

Clearly the first challenge is to identify people infected with HIV earlier. Certainly easier said than done, and as I've discussed before our current 'voluntary counselling and testing (VCT)' program is totally failing in this regard. Effectively passive, it's really provider initiated in most cases, detecting people only after they have to be admitted to hospital with AIDS-related conditions. But from the many questions I get (but rarely answer), it does seem many people are more ready to go to the ubiquitous private labs (Prodia is the best known) for testing, often very soon after their risky activity. Sadly they are usually poorly counselled and rarely referred from such labs.

As far as I know, these labs are not included in the national AIDS action plan. Would it not make sense to recognise their role, and provide guidelines and even accreditation to assist them to do a better job?

Once identified, how do we get them into treatment - and retain them? Clearly we need a better referral system. But if we get them into care soon after they are infected, we know that it may be five years or more before they need ART - based upon the current criteria. It's clearly extremely difficult to expect them to return for regular follow-up - more so since (as I have noted) they'd prefer to forget that they are living with HIV.

The solution is simple - and now increasingly urged: start ART immediately. Hardly a day goes by now, but some study does not report the benefits of much earlier start, and the risks of delaying. Prof. Joel Gallant from Johns-Hopkins, one of my HIV care heroes, was asked recently, if he became infected, when would he start ART. His answer? "Immediately" (Suppose that you were positive). And this is even more important for people with co-infections such as viral hepatitis.

Studies by WHO experts have shown that starting ART immediately would save money in the long term. The challenge of course is in the short term. Even the WHO shows no signs of 'putting its money where its mouth is.'

Other approaches? I am convinced that one barrier to starting ART is that people are doubtful that they will be able to adhere to the every 12-hour schedule of current first line regimens. But in fact the current standard first line regimen in the rich world is much easier: one pill once a day before going to bed. Most people go to bed every day, so they don't need complex reminders, or concern about being late. Clinton Foundation can buy such a pill for little more than US$300 per patient per year - less than the government pays Kimia Farma for the current standard first line regimen. And of course this one-pill-once-a-day ART solves the problem of taking ART during the fasting month.

I've never been a strong supporter of the concept of 'case managers' here. But since we have them, why don't we require them to play a more active role in retaining people in care, especially those do not yet need ART? Get help from peer support groups if they lose contact. Of course they should be doing this already for those on ART, but...

We can - and should - do all we can to make sure that no more Fredy's die from starting treatment late...


Friday, 10 April 2009

The dark world will submit to its present treatment

Surprise, surprise! As I forecast. there's confusion over where to put the drug users 'sentenced' to rehab. The Department of Social Affairs has admitted that they are totally unprepared to accept even a small proportion of them. They have only 33 such centres on their books, with total capacity for 1000 addicts, Their spokesperson admits that there may be others that don't "meet our minimum standards." I'd hate to see what those look like - although I think I've already seen several.

Those are the ones that they monitor. The mental hospitals (many of which have turned addiction into a lucrative business) add some more places, and one assumes that these are properly monitored by the Health Department (or not as the case may be). Of course, as I noted a few days back, they'll shortly all be full of failed parliamentary candidates.

Then there are the 'faith-based' ones (to use the 'in' term); I guess they are monitored by the Religious Department (yes, there is one here!). Among these are the centres located in cool hilly areas that wake residents up at 2 a.m. for a dunking in a cold bath. You need extremely strong faith to survive that!

Since no doubt the judges will obey the Supreme Court ruling (I'm sure that they always do what they are told), supply will respond to demand. Prepare for a mushrooming of rehabs that fail to meet the low minimum standards of the Social Department.

In some ways, the sad thing is that, as I noted in my report on a prisons workshop, the prisons are finally getting their act together, and treating (in both senses of the word) prisoners with HIV better. While still very limited, they have the staff, the facilities, and the increasing will to respond. Is there any chance that even the rehabs that meet the minimum standards will provide such services? Fergetit!


Thursday, 9 April 2009

Delays breed dangers

Sadly, another heavy loss this week. Fredy Malik, Indonesian Drug User Activist since 2002, died of AIDS. I did not know him well, but it is clear that he had played a crucial role in the development of harm reduction in Indonesia, in Asia, and probably more widely. It is due to people like Fredy that Indonesia is among the leaders in this field.

James Blogg from the AusAID-funded HIV Cooperation Program for Indonesia (HCPI), who I ran into earlier this week, noted how sad it is that many Indonesian drug users with HIV leave it until very late to start antiretroviral therapy (ART). This was apparently the case with Fredy. Seems that this has been a challenge in Bali since the start. In around 2003, the Bali provincial AIDS Commission agreed to provide funds for ten activists to start treatment. But almost a year after the launch, only two or three people had taken up the offer, even though many clearly needed it. In meetings with HIV-positive people, it became clear that they were extremely worried about the reported side effects, to the extent that they were scared to start therapy.

Part of the problem is the not infrequent cases of what is called Immune Reconstitution Inflammatory Syndrome or IRIS. Many symptoms of infections, for example fever, are a result of the response by the body's immune system to the infection. But when the immune system is severely damaged, it is unable to mount a response, and thus people with advanced HIV infection frequently appear quite well, with no serious symptoms. However once they start ART, the immune system starts to recover, and quickly responds to these 'masked' infections. The paradoxical (and very distressing) result is that within weeks or months of starting ART, many people who start late experience a worsening of their health, sometimes some really nasty symptoms (such as loss of sight), and not a few die.

The solution is to start (as recommended) before the immune system becomes so badly damaged. For many, this is not an option, since they are only diagnosed HIV-infected in this condition. But many, such as Fredy, have been long aware of their infection, but have delayed starting. To many this seems amazing; why would they be so loathe to start life-saving therapy, especially when it is free? It's a no-brainer, no?

Actually, we often underestimate the psychological barriers to starting ART, especially for those who have lived several years without any health problems caused by HIV. Starting ART can seem like capitulating to the disease, accepting that HIV has won and the journey to AIDS is near its end. Not only that, but we must accept that HIV is now going to control our lives. ART: don't leave home without it. Be reminded that we have HIV twice a day when we open our pillbox. Face unpleasant side effects, both short and medium term (and worry about long term ones which have yet to appear). Agonize over whether we can really develop the discipline to take the meds exactly as prescribed every twelve hours without ever forgetting. Worry about sustainability of supply of ARVs, by a system which has demonstrated a clear inability to guarantee availability. And face the ever present threat of treatment failure, causing the development of resistance and the need to change to a more complex and expensive regimen. No, we should not underestimate the challenges of starting therapy.

In fact, in this regard those diagnosed late may be better off. They aren't given time to think about it. 'You need to start ART in a couple of weeks if you want to survive.' Still a decision, but more easily reached.

What can we do to help the Fredy's to start earlier? This post has gone on long enough. I'll return to this point later.


PS: Yvonne A. Sibuea, General Coordinator, PERFORMA, has posted 'In Remembrance of Fredy Malik.' on a mail list. I cannot link to this, but if anyone would like me to send them a copy, please let me know.

Monday, 6 April 2009

One half the nation is mad

Mental hospitals are on standby! Emergency cases expected! No, not an explosion of drug use, or even an emptying of the prisons as a result of the Supreme Court decision that convicted drug users should not be incarcerated in prison, just incarcerated in (probably less humane) 'rehab centres' (see Iron bars a cage).

No, this is for the parliamentary candidates who don't get elected. Although some might feel that they should have considered this as an alternative to becoming candidates, there is fear that a significant proportion will require mental treatment as a result of losing everything in their effort to represent their community. Many have hocked all they own to raise money for their campaigns, and clearly are unqualified for any form of productive employment.

I forget how many candidates there are from the more than 30 parties for around 500 assemblies (nation, provincial and district/municipal), but it runs to more than a hundred thousand. If only one percent 'go mad', that's a lot of candidates for the asylums - someone estimated it far exceeds their overall capacity. So it'll not just be the prisons that'll be overcrowded! And most of the mental hospitals are also rehab centres for drug users!