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.

Babé

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.