Safe fasting

We're now just a month away from the Muslim fasting month of Ramadhan. This usually brings a slew of questions about taking meds while fasting. I have to be a bit careful about discussing this: at a recent training session, one participant hailed from Aceh, a very conservative Muslim area. He became quite angry with me as a bule (foreigner, literally with white skin) pontificating about what he felt was purely a religious matter.

Hopefully the problem of taking ARVs during Ramadhan will disappear for most in the next couple of years, as once-daily regimens become available here. But at the moment, almost everyone is taking meds on a 12-hourly basis. As I've noted before, we do try to encourage them to see this 12-hour interval as important.

But during Ramadhan, those fasting should not eat or drink between dawn and dusk. In Indonesia, this means an interval of around 14-15 hours. If they join the fast, and take their meds at the pre-dawn meal (sahur) and then again when they break the fast, will they risk developing resistance?

As far as we have been able to find out, there's been no trials of this, although the University of Indonesia has promised to do a study. So we're back with empirics. What I tell people is that if they don't want to take any risks, better to stick to their normal schedule, and accept any sanctions due - my understanding is that there are rules regarding this. But many have never since their youth missed a day fasting during Ramadhan, and the feel it very important to join the fast. For those, we say that the first-line regimens in Indonesia are pretty forgiving, and they will probably be OK, particularly with the blessings of God.

Actually, to me the greatest risk is not during the fasting month, when the routine is clearly defined by sahur and fast-breaking, but returning to their 12-hour schedule when the fasting month is over. To make this worse, as many will know, the post-Ramadhan holiday (Lebaran) in Indonesia is characterised by a return to the village, to the family. The journey often takes 24 hours or more - plenty of opportunities for forgetting the doses. Then at home, probably many family members are not aware of their HIV-status, so they must take the drugs surreptitiously in the midst of the celebrations. Again, difficult to remember. And of course, once returned to the city, the previous routine has been totally lost, and must be recovered. A real risk...

We really do need more forgiving, once-daily meds.

Babé

Adult content?

It struck me as I re-read yesterday's post that some might consider it too explicit. Should I perhaps tick 'adult content' in the blog setting? By coincidence, yesterday I also translated a post from Elizabeth's blog and sent it on to our Indonesian language mail list, including of course the source: The Wisdom of Whores. When it arrived back in my in box, it had been marked as spam by my Internet service provider. It reminded me Elizabeth had told me that she had great difficulty getting people to link to her blog because its (great) name was often filtered.

As with Eli's blog, I'm sure the sort of people who would read this would not be upset. If you work in this field, you must be broadminded - and forget any previous prejudices. I recall when we were looking for people to attend our second meeting of people with HIV in 2001, we invited a very macho young man from a drug rehab centre in Bogor. Before accepting, he asked his boss if it would mean he would have to meet with waria (transsexuals). His boss told him that as an HIV-positive junkie, he could not afford to be choosy! And, yes, he did meet with waria, and yes, he found that they were human, just like him.

In some ways, HIV is a great leveller.

Babé

Colour scheme

I get quite a few funny questions, but I think my favourite so far has been:

"Is the colour of the sperm of an HIV-infected person different from normal? What is the colour of the sperm that comes out of the penis of an HIV sufferer? Is the semen of an HIV-sufferer also different from a normal person?"

Another questioner was also worried about colour:

"Will a person who has caught HIV have a penis with a different colour? What are the physical characteristics that can be seen on the penis of someone infected by HIV?"

I'll leave you to guess at my answers, but my tongue was firmly in my cheek!

Babé

Blood spots and politics

A couple of years back, a health department official calculated that every day around ten babies are probably born with HIV in Indonesia. We still don't find many - only a total 228 have been reported as at the latest report, although there has been a 12% increase in reported cases over the last quarter! But in my travels I'm hearing of more and more cases, although clearly most cases remain undetected and contribute to the overall 35/1000 infant mortality rate here.

Babies born to HIV-positive mums inherit the mother's antibodies, and so a standard HIV test (which looks for antibodies) will show a positive result until the mother's antibodies are lost, which can take up to 18 months. So we can't be sure if a baby is infected until the age of 18 months. As a result, antiretroviral therapy (ART) is often delayed 'until we can be sure'. The problem is that, if babies are infected, the chances are high that they will die before celebrating their first birthday. (Forgive me if you already know this!)

A recent trial in Africa found that HIV-infected babies should start ART as soon as possible after birth, even if they don't show any symptoms. So a better test is urgently needed.

At a meeting late last week, the same official said the government is developing a policy that all babies born by HIV-positive mums should be tested by PCR (which looks for the virus) soon after birth. If they are found to be infected, they should be started on ART immediately. Ah, but a PCR test here costs Rp 850 thousand (almost US$100) and there are few labs with the equipment needed. Who pays?

Currently Spiritia has limited funding for this purpose - probably only enough for another 20 or so kids. But a couple of years back, we discussed this with the kindly folks in Australia. They were developing a system which could provide a diagnosis based on dried blood spots (DBS). Basically (if I understand it right), you prick the babies heel, and sop up a drop of blood onto filter paper. This paper can then be sent through the normal mail to a lab able to carry out the test, at a cost much lower than the normal PCR. The Australians even offered to do the test for free if we could send the DBS. Easy, you'd think. No transport of hazardous blood, no need for a courier, low cost.

Ah, but we forgot the politics! As you may have heard, there's been a problem with samples of bird flu virus being sent overseas. As a result, there is strict control over sending any sort of samples to other countries. So although we could start yesterday, doing so would offend against the regulations. So the testing will have to be done in country. It'll start Real Soon Now!

Babé

A small victory

Among the many battles (I almost said 'crusades'!) that I have joined is that for free access to information about treatment for HIV. It's been a long time since someone coined the phrase "a drug is a chemical plus information", but it's still true, especially for the antiretrovirals that many of our friends are taking. There's a huge 'industry' (rightly) clamouring for improved access to these drugs. But I've often been amazed me that so few of my fellow activists understand that without information, these drugs can be useless or even dangerous.

Almost every day, there is 'news' about a new side effect, a new interaction, a new dosage, for these drugs. Where? Why, in the journals, of course! Want to read the article? If you're not a subscriber (cost: usually several hundred dollars a year), it'll cost you US$25 or more to read one article. Who in the developing world can afford that?

The prestigious journal 'AIDS' has just released a special issue, featuring "articles examining universal access to HIV/AIDS treatment...". There's a foreword by Jacob Gayle of the Ford Foundation, who writes, "I trust the details that are found within this publication might help us all to begin to think about not only the latest in the art and science of HIV action, but also allow us to reflect upon the kind of world we hope to engender, with the values and actions that promote the efforts we know are necessary for reinforcing the human rights and dignities afforded to us all."

Ironically, just to read Jacob's article would cost $35! But there's a happy ending. I was so upset, I immediately sent a rant to Meiwita Budiharsana who heads up Ford's office in Indonesia. She took this up with Jacob, and lo and behold, within 24 hours the articles appeared for free at the Community HIV/AIDS Mobilization Project (CHAMP) for the 2008 International AIDS Conference. Because it happened so fast, I guessed that this would have happened anyway, but no; Tom Coates from UCLA confirmed that my rant was indeed the trigger.

A small victory for free access. Thanks Meiwita!

Babé

Are you a 'case'?

For some reason which I've never fully understood, Indonesia was persuaded that people living with HIV (PLHIV) needed 'case managers'. I think it originated from the US paradigm that was then being pushed by one of our donors. Anyway, now we're stuck with them. We didn't even bother to change the name, calling them 'manajer kasus' (I'm sure even those who don't know Indonesian can work that out!).

In the US, with a huge variety of services available that patients may have difficulty in navigating, perhaps this task is needed. But here, where services are very limited, many of the 'case managers' I have met have been confused about what they are supposed to do - and many end up as 'gofers', both for hospital staff and for PLHIV.

But what upset many of us right from the start was that the name is totally unacceptable to empowered people. As one of my PLHIV colleagues insisted at a meeting with staff from the Ministry of Health today, she is most unhappy to be considered just as a 'case' and she certainly doesn't appreciate the idea that she should be 'managed'.

Sad that her point of view, widely supported by PLHIV here, seems to be ignored by a rather arrogant health service. I wonder why patients in the US put up with this?

Babé

Can't comment?

I've just been told that the Google bureaucracy makes it quite difficult for those without a Google ID to post a comment to my blog. So I've opened it up so that anyone should be able to add a comment. If anyone still has a problem, please let me know. And please DO post comments and let me know your thoughts!

Babé

Dr Love

The online version of the normally staid Indonesian daily, Kompas, offers "Dr. Love's Column", hosted by Dr Wei Siang Yu alias Dr Love. In his profile, Dr. Love notes that he works as "Medical Doctor, Medical Inventor, and Bio-techno-preneur," and his areas of expertise include "Reproductive Health, Sexual Health, and Bio-communication" (whatever that is!). Many of the questions answered in the column are mildly 'stimulating', for example from a 71-year-old who claims he masturbates every day (good for him!), and the women who, having had sex twice with different men on one night and is now pregnant, asks how she can decide who is the father. Since these are all outside my area of expertise, I'm sure the answers from our Bio-communicator are most appropriate.

But now there is a question from someone who had recently shared eating utensils during a meal with a friend who was later diagnosed with AIDS. He was very worried that he had become infected. Dr. Love's response? Most unlikely, as long as he didn't have any mouth sores.

If our experts in sexual health are so poorly informed, what hope have we for other doctors?

Babé

Jihad against AIDS

Several activists in Indonesia are supporting the idea of a 'Jihad against HIV/AIDS'. They seem unable to understand the suggestion from Syaiful Harahap, a veteran AIDS journalist, that although the idea might be great, it may perhaps be sensible not to talk of it as a 'jihad'. Mind you, I suppose we ought to have similar sensitivity when we refer to 'crusades'.

The amazing thing (to me) is that this great idea seems to have stemmed from a meeting of religious leaders in East Java organized by USAID|Health Policy Initiative (HPI). One of the participants is quoted as saying, "USAID has the money, while we have the human resources and network. This offers potential synergy for strategic cooperation to benefit the public."

I wonder how USAID views the idea of funding a jihad?

Babé

The Cure

About once a month I get a question from someone who has a friend who knows someone who was cured of HIV by a 'dukun' (Indonesian version of witchdoctor).

Takes me back to when my partner was in late stages of AIDS many years back. In those days, being open about one's status was not even thinkable, so no one except me was aware of his situation. But of course his friends knew he was very sick: 'cancer of the blood'.

Almost every Saturday, another friend would appear with either some dreadful concoction to be drunk (usually together with invocations) or with a dukun who would proceed to identify the cause. I vividly remember one occasion when said dukun went down to the garden, dug around a little and came up with a short length of barbed-wire which he said he had found buried. This clearly had been done by an (unidentified) person with a grudge, but now everything would be OK, and my partner would shortly recover. If it wasn't so serious, I'd have had difficulty not laughing out loud!

Anyway, back to the current dukuns. They of course claim that after their treatment, the patient has seroreverted (of course they don't use that term, just say he is now HIV-negative). Oh yeh? They clearly haven't heard of antibodies, and the fact that the HIV test looks for them. Antibodies last for a long time (we usually say for life, but we may be stretching it a bit), and it's most unlikely that the dukun's treatment would not only purge the virus but also remove all traces of the infection, including the antibodies, So, by claiming seroreversion, in my book they are branding themselves liars. They do really need to learn a bit more.

Of course, we always say that if a cure was really found, the whole world would be beating a path to their door. In my more depressed moments, I have nightmares that that might not be the case, and that when a cure is found, it might be hushed up to protect the profits of Big Pharma. Please God this is only a nightmare!

Babé

If in doubt, blame the virus!

If the overworked and undertrained doctors in AIDS referral hospitals in Indonesia are confused by symptoms, some of them take the easy way out: "you have HIV, that's normal." Let me give an example from a few years back.

A young man with HIV (let's call him Robby) but still with a high CD4 count (showing that his immune system had not yet been badly damaged by HIV) collared me one evening. "I've been suffering from mild diarrhoea for months; not really bad, but I have to poop two or three times a day. I reported this to my doctor several times, but he just tells me, 'with HIV, you must expect that sort of thing.'" I told Robby he must be firmer with his doctor; HIV rarely causes diarrhoea, particularly at high CD4 counts. It should be possible to find (and treat) the real cause.

Robby agreed but (like so many of our friends), once in front of the doctor, his courage left him, and he reverted to the normal 'yea, Doc' form of communication. However, I ran into him a couple of months later. He had visited Bangkok for a meeting, and had taken the opportunity to have a thorough check-up by an HIV doctor there. The result? Worms! A dose of Combantrin and the diarrhoea was gone.

Cause and effect: always dangerous ground...

Babé

Losing essential assets

Probably you all know that one common side-effect of some anti-HIV drugs is called lipoatrophy. This basically means loss of fat. Perhaps you'd think that that would be a welcome side effect, but sadly it doesn't affect the stomach; in fact a related side effect sometimes called lipohytrophy has the reverse effect: adding fat to the stomach, the breasts and sometimes causing a buffalo hump. Not much is really known about how this occurs, or even which drugs are causing it. But it's becoming clearer that d4T (stavudine) is most to blame, usually after about a year's use.

It is not clear if lipoatrophy has a clinical impact. But for those it affects, it is a real psychological problem. Last year I met with a group of young women at a meeting of the Indonesian Network of Positive Women (IPPI). For several, their biggest complaint was the reduction of the size of their butts (Indonesian women tend to have more attractive rear ends than some of those you see waddling along the streets of the Western world). One of them told me that she had lost her assets.

As I say, there's no obvious solution. However it is clear that people should not be taking d4T for more than 9-12 months. And there are alternatives here. But it's sometimes difficult to get doctors to treat this seriously, and support a change in the drug combination.

Babé

Adherence? 101%!

They got married not so long ago, both HIV-positive. One night while in the middle of doing what newly married couples tend to do, her husband withdrew, saying it was time for him to take his drugs.

Now that's adherence! Mind you, not so much fun for her!

Babé

Liver problems

Since most of the people with HIV (PLHIV) I meet were infected through sharing needles, most of them are co-infected with hepatitis B and/or C (HBV/HCV). These nasty viruses, which are spread in much the same way as HIV, usually take longer to cause problems. Before antiretroviral therapy (ART) became widely available, most people died of AIDS before hepatitis made itself felt. But now, thanks to ART, they are living long enough to start worrying about surviving their other virus(es).

We've done quite a good job of providing treatment for HIV, but we're a long way behind on drugs for HBV and HCV. I'll talk some other time about hepatitis B, but for hepatitis C, the picture is awful.

First, cost. As one liver doctor here told Anne Mijch, to diagnose hepatitis C costs the same as buying a motorbike; to treat hepatitis C costs the same as buying a car. (From the Jakarta roads, seems like every Indonesian can afford a motorbike - and all of them are riding them at the same time!). The side effects of treatment are also horrible - and last for the full year of treatment. And at the end of all that, if you're co-infected you'll be very lucky to be cured - the chances are less than 30%.

Of course, for treatment at that price, there's no shortage of people touting it. And of course they don't dwell too much (at all?) on either the lousy side effects or the lousy cure rate.

But for most, treatment for hepatitis C is only a dream. We try to tell them that they're lucky, because better and cheaper and easier to tolerate drugs may appear in time. But at the moment this is also an empty dream; there's no end of candidates, but few that offer much real hope in the next ten years.

Because most of the folk we support were infected in the last five or six years, we aren't yet feeling the effects. I'm scared that in around five years time, it's going to be like we're back in the pre-ART days, with people dying of liver failure instead of other opportunistic infections. Of course, they may die of a motorcycle accident before that!

Babé

Drug of choice?

While in Surabaya, I heard that heroin (putaw) is no longer the drug of choice; it has been replaced by buprenorphine/Subutex. This legal drug is now being prescribed by many doctors. Buprenorphine is a synthetic opiate which is produced in pill form and should be dissolved under the tongue. So it doesn't have to be injected, and because it's legal, it doesn't trigger crime. And because its manufactured by Good Manufacturing Practices, its quality and dose is predictable.

Good news, you'd think. But the bad news is that many users grind up the pills, dissolve the powder in water then inject it - just like they did with putaw. The experts tell us that people don't inject just to get a quicker high, but because it becomes part of the habit - part of life, I guess. So although perhaps we're reducing crime, and indeed reducing costs to users (although buprenorphine is not cheap), we're not reducing the HIV infection risk.

In addition, buprenorphine doesn't dissolve in water. So the resulting suspension contains solid particles of buprenorphine, whose size depends on the effort put into grinding it up. A user in sakaw (withdrawal) is usually not very concerned with such niceties. Result is that an increasing number are suffering abscesses and other health problems from putting lumps of buprenorphine into their blood stream.

Buprenorphine 'competes' with methadone as opiate substitution therapy. But in Indonesia, there's really no competition. Although methadone is cheaper, it is only offered in a (still) relatively small number of designated clinics, usually only open in the morning. And the staff monitor its use. Buprenorphine, on the other hand, is available in most pharmacies, and if they require a prescription, that's easy! There's a doctor on the spot. And nobody cares how you use it.

Of course, all this was eminently predictable - and predicted, among others by Dr Erwin Wijono, the founder of the Jakarta Drug Dependency Hospital in the 1970's, and thus the 'father' of drug treatment in Indonesia. One day I'll write the history of how we got here.

Babé

Avoid Singapore

Yet another case of a person living with HIV (PLHIV) from Indonesia deported from Singapore! Although for some reason, Singapore doesn't appear on lists of PLHIV-unfriendly states (like the US and Saudi Arabia), in fact it is some ways worse than these.

Let's be clear: if a non-Singaporean citizen is diagnosed HIV positive in Singapore, this must be reported, and the person concerned will be swiftly deported. And if he or she tries to enter Singapore ever again, even as a tourist, he or she will be put on the next plane out. And don't take chances with the Singapore Immigration database; its foolproof.

Of course, this can be a real bind. Singapore is a regional hub, and many multinationals have their regional offices there. I know of at least two cases of up-and-coming Indonesians whose career has been cut short because they can't even visit the regional office, let alone work there.

Moral: if you are a non-citizen, don't even think of having an HIV test in Singapore. And if you are HIV positive (or suspect you may be), forget the idea of going to Singapore for the high-class hospital treatment offered. Better off going to Bangkok.

Babé

The questions that get asked!

As perhaps you know, we host a QA forum on our web site, intended to answer questions about care, support and treatment for PLHIV in Indonesia. Since we get two or three questions a day, and sometimes as many as nine or ten, this keeps me quite busy.

We tell people that this forum is not intended to respond to 'Am I infected?' questions. However, since apparently there are no QA forums to answer this type of question, around 30% are like this. Usually I just delete them; although they do indeed need answers, I don't have the capability and knowledge (and - often - patience!) to answer them properly.

Again and again, people ask about the probability that they will be infected from one or another type of risky activity - almost always the first time they've ever done it, and also 'before God, the last time' (believe that if you will!). How they are going to interpret a probability of (say) 0,5% and determine what it means in their case, Lord alone knows.

Sometime the questions are even more curious - or downright biased. Take for example a question I got today:

"Have there been any studies to determine what percentage of HIV-positive women want to infect others? If there have been, please let me know the statistics."

Now, what sort of person would ask a question like that? How on earth would you do such a study. "Oh, by the way, Miss X, do you intend to infect other people?" Duuh!

But then, I'm not an epidemiologist, Perhaps this is the sort or question they do ask? Eli, are you listening?


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

Marriage: A Risk Factor for HIV?

This morning while browsing an article with that title caught my eye. It was about South Africa, but in my experience reflects reality in Indonesia. It seems that almost all of the women with HIV I meet were infected by their husband or partner. Often they only find out that they are infected after their partner dies and the cause of death is found to be HIV. Usually this is a result of earlier injecting drug use that the female partner may not even have known about. The women is then tested: positive. Often a baby is also tested: positive. By coincidence, Prof Samsu answered a question from such a women in his weekly QA column in the Kompas daily today.

Of course, the result is not always quite as bad. Again, by coincidence, a posting appeared this morning in the sharing forum on our web site. This women lost her husband two years ago; the cause was again only identified after death. She and her child were subsequently tested and found negative. Sadly, as is often the case, it appears she was not properly informed, and is still not convinced that she and her child are uninfected, even though she has been retested since with the same (negative) result.

Her shame has prevented her from seeking support, together with information she can trust. I hope my reply to her cry for help will assist her to overcome her fear - and her shame.

Since Spiritia was set up by Suzana, we have always felt that those affected by HIV have an equal - or greater - need for peer support as those infected. Sadly many of the international activists pressing for greater involvement of people living with HIV (GIPA) ignore the needs of such people. One such recently told me that he 'never came across an organisation for people affected by HIV' (in fact there are several in Indonesia), and quite clearly could see no need for such. Seems to me that ignoring or sidelining the negative partners of positive people is not only inhumane, but also overlooks an incredible resource.

GIPA originally included both infected and affected. It will be a pity if we allow it to become exclusive.

Babé

Hello. World!

I've never been much of a diarist, and I've resisted starting a blog because it seemed to me that, with so many blogs, who could possibly want to read one more? But it struck me the other day that most of what we do is in Indonesian, and few people who don't speak the language would have any idea of what we in Spiritia are actually doing - and the adventures we have.

So in this blog, I'll try to report the interesting occurrences that I experience in my daily efforts to support the (mostly young people) with HIV in Indonesia. For the most of you who don't know who or what is Spiritia, you can browse to the English version of our web site, which includes a brief profile and some information about AIDS in Indonesia.

Basically, Spiritia is the Indonesian national peer support organization for people living with and affected by HIV or PLHIV. We support and work with more than 200 peer support groups for PLHIV around this huge and extensive country. Most people don't know much about Indonesia; it stretches from East to West over three time zones, a distance equivalent to New York to Los Angeles, or from Ankara to Belfast. With 17,000 islands, you'll understand that it offers many challenges in getting around. Although I live on the outskirts of Jakarta, I spend a good proportion of my time travelling, much of it on aeroplanes of the much-vilified (with some reason) Indonesian airlines, but also sometimes on the even more disorganised railways and sometimes on a variety of usually overloaded and terribly maintained boats. Sometimes it means staying in some less than salubrious hotels. It would be easy to let all this stress one out, so the solution we have developed is to view it all as an adventure, hence the blog title.

Not every day brings an adventure, so this blog won't just be a diary. When I'm short of material, I'll try to dredge up some interesting tale from the past - I've been supporting people with HIV in Indonesia since 1991, so there's no shortage, as long as my fallable memory holds out.