How do we know if the babies of HIV-positive mums are infected? Clearly the head of the Sukabumi municipal health service (Dinas Kesehatan), Boyke Priyono, is not clear. He should be aware that the normal HIV test, which looks for antibodies, may give a positive result in such babies up to the age of 18 months. This is because babies are bequeathed all of their mother's antibodies at birth. It may take a year and a half to lose these antibodies, and replace them by it's own ones - if they are indeed infected. So a positive result prior to this is not conclusive.
There is an alternative, using a test which looks for bits of the virus, not the antibodies. This test can give a confirmed result at around six weeks of age, but as I related previously, it costs a bomb (at least for most families) and is not widely available in Indonesia. I'm sure it's rarely, if ever, used in Sukabumi.
Yet Pak Boyke is reported in today's Kompas daily as saying that they identified four babies with HIV in the town last year. "They were confirmed HIV-positive after being tested at the age of one year," he is reported as saying.
In shades of the infamous former South African Health Minister, he is also reported as saying that the babies immune system must be preserved with good nutrition. "If not, they will progress to AIDS more quickly. With control of their development and good nutrition, they will probably only progress to AIDS in adolescence."
Of course, if they are not actually infected, it may take even longer, dependent upon whether/when they join in the normal risk behaviour of adolescents here. But Pak Boyke should be aware that, if they were infected at birth, even with the best possible nutrition (beetroot anyone?), they will almost certainly need antiretrovirals before the age of ten.
One wonders what the parents of these kids have been told?
Babé
Wednesday, 7 January 2009
Tuesday, 6 January 2009
...crowds me till I die
"Prisons face ongoing over capacity problems in Indonesia" - so states a recent headline in the Jakarta Post. What an understatement! The article quotes Untung Sugiyono, Director General of Penitentiaries at the Justice and Human Rights Ministry as saying that Indonesia has around 400 penitentiaries with a total capacity of nearly 90,000, but currently they are required to hold more than 130,000 detainees and convicts.
That average is pretty bad, but it masks some really horrendous overcrowding in individual prisons. For example, I visited one prison in West Java in late 2007, where they told me the capacity was 400 inmates. At that time they had more than 1,100! Even worse was one just outside Jakarta with more than 1,700 inmates against a capacity of 350. One can imagine the conditions! I was told that the prisoners did not actually have to sleep standing up, but they did have to sleep right in front of the bathroom door.
According to Pak Untung, the overcrowding has caused "a spike in disease among detainees." Again, an understatement. We often refer to the spread of TB in 'congregate settings.' These must be classical examples of this, especially since overcrowding is worse in the 'narcotics prisons', the prisons set up to house the exploding number of drug offenders, many of whom have HIV.
Apparently 750 inmates died during their prison terms in 2008, most of them from HIV infections and tuberculosis contracted before they entered the facility, according to Pak Untung. He admitted that they generally got worse following incarceration: "I guess most of them were depressed because of the change of environment," the Post reports him saying. Another understatement!
The news is not all bad: antiretroviral therapy is increasingly available in the prisons here. I'll talk about this in more detail later.
Babé
That average is pretty bad, but it masks some really horrendous overcrowding in individual prisons. For example, I visited one prison in West Java in late 2007, where they told me the capacity was 400 inmates. At that time they had more than 1,100! Even worse was one just outside Jakarta with more than 1,700 inmates against a capacity of 350. One can imagine the conditions! I was told that the prisoners did not actually have to sleep standing up, but they did have to sleep right in front of the bathroom door.
According to Pak Untung, the overcrowding has caused "a spike in disease among detainees." Again, an understatement. We often refer to the spread of TB in 'congregate settings.' These must be classical examples of this, especially since overcrowding is worse in the 'narcotics prisons', the prisons set up to house the exploding number of drug offenders, many of whom have HIV.
Apparently 750 inmates died during their prison terms in 2008, most of them from HIV infections and tuberculosis contracted before they entered the facility, according to Pak Untung. He admitted that they generally got worse following incarceration: "I guess most of them were depressed because of the change of environment," the Post reports him saying. Another understatement!
The news is not all bad: antiretroviral therapy is increasingly available in the prisons here. I'll talk about this in more detail later.
Babé
Monday, 5 January 2009
...profit the professor naught
Returning to Michael's article in Inside Indonesia. I'm sure that anyone who is involved with HIV in Indonesia has identified 'Professor Setiawan'. I fully understand the frustration of 'Nuraini' and Michael, and there's no point in me trying to defend the doctor. Nuraini's report is unfortunately by no means unique. We have frequently suggested ways that doctors could spend more time with their patients, in particular those recently diagnosed - and their families. The situation in this case is exacerbated by the fact that the doctor concerned has a high reputation - in many ways justified. So many patients, or more often their families, insist on being treated by the 'Prof'. The result? The sixty patients at every surgery that Michael referred to.
What saddens me more (and makes it more difficult for me to be balanced) is that I have known this doctor for more than 18 years. I first met him on the night my partner was diagnosed with HIV, and I immediately felt we were in good hands. My partner appeared very comfortable with him. As the end came, the doctor on a couple of occasions visited my partner at home, and he took the time to attend the 40-day 'selamatan' following his death.
In the following year, I volunteered with the AIDS service organization the doctor had co-founded, and he mentored me as we developed the program to support people living with HIV in Jakarta. He greatly encouraged me in my efforts to offer information in the vernacular on care, support and treatment for people with HIV. Although I left the organization after a couple of years, we continued (and continue) to meet, and I think our mutual respect remains.
However, the relationship did start to suffer as we tried to encourage people with HIV to develop more empowered relationships with their doctors. Sometimes his patients would contact me with concerns, and I would try to provide them with informed advice. On their next visit to the doctor, some of them would begin with 'Babé says...', clearly not an ideal way to start a discussion. I know this doctor is very concerned about interfering between other specialists and their patients, even when the patient concerned is also is also one of his - I sometimes think this is taken to the extreme, particularly where the other specialist has limited experience treating people with HIV. But given this, I can understand that he doesn't appreciate me 'interfering' in his relationship with his patients. This is not, of course, my intent, and generally I am only attempting to provide the most up-to-date information, and always tell them to discuss this with their doctors before making any decision.
What can and should be done by us 'bulé' (foreigners) to address these problems? Sometimes I feel I'm on the horns of a dilemma. Has Michael's action helped? I'll return to this subject later...
Babé
What saddens me more (and makes it more difficult for me to be balanced) is that I have known this doctor for more than 18 years. I first met him on the night my partner was diagnosed with HIV, and I immediately felt we were in good hands. My partner appeared very comfortable with him. As the end came, the doctor on a couple of occasions visited my partner at home, and he took the time to attend the 40-day 'selamatan' following his death.
In the following year, I volunteered with the AIDS service organization the doctor had co-founded, and he mentored me as we developed the program to support people living with HIV in Jakarta. He greatly encouraged me in my efforts to offer information in the vernacular on care, support and treatment for people with HIV. Although I left the organization after a couple of years, we continued (and continue) to meet, and I think our mutual respect remains.
However, the relationship did start to suffer as we tried to encourage people with HIV to develop more empowered relationships with their doctors. Sometimes his patients would contact me with concerns, and I would try to provide them with informed advice. On their next visit to the doctor, some of them would begin with 'Babé says...', clearly not an ideal way to start a discussion. I know this doctor is very concerned about interfering between other specialists and their patients, even when the patient concerned is also is also one of his - I sometimes think this is taken to the extreme, particularly where the other specialist has limited experience treating people with HIV. But given this, I can understand that he doesn't appreciate me 'interfering' in his relationship with his patients. This is not, of course, my intent, and generally I am only attempting to provide the most up-to-date information, and always tell them to discuss this with their doctors before making any decision.
What can and should be done by us 'bulé' (foreigners) to address these problems? Sometimes I feel I'm on the horns of a dilemma. Has Michael's action helped? I'll return to this subject later...
Babé
Sunday, 4 January 2009
...positive endeavors...
Some of you may have read Michael Buehler's article "No positive news: People living with HIV face corruption and incompetence in the health system" in the last issue of Inside Indonesia. I am very aware of the case he reports, and sadly it is only too typical. We have been fighting these problems since antiretrovirals (ARVs) first became available in Indonesia over five years ago.
At that time, we had to make a decision: wait for a trustworthy system to be put into place, or try to force things. We took the latter approach. although not without trepidation. One doctor with an international agency warned that we were taking a big risk, but the idea of telling people who were dying, "Just hang on, we'll get you treatment Real Soon Now" just didn't seem to be an acceptable solution. We formed an ARV fund to buy ARVs for activists, as I recounted in the story of Mama Dora. We purposely chose recipients from outside Jakarta - indeed one of the first, in late 2003, was from Merauke, Mama Dora's home in Papua.
He had come to Jakarta for a meeting of people with HIV, fallen sick with a very low CD4 count. So we started him on ART at one of the hospitals here in Jakarta. Luckily MSF had just set up what turned out to be a highly successful HIV treatment program in Merauke, so I rang the MSF doctor to tell her that he was returning to Merauke to continue his therapy. She was quite upset, saying they were not yet ready. But, as they say here, 'apa boleh buat' (what could she do?). They had to become ready fast.
But I must say, I did assume that a workable and working program could be set up in a few years. The fact is that the Indonesian ART program is unable to support only around 10,000 people, while several smaller countries in Africa have in the same time scaled up to provide ARVs to over scores of thousands each - why? I know, there are a different set of challenges, but...
Should we have waited? I think we would still be waiting - and most of those who are (reasonably) complaining now would not be alive...
I'll return to some of the other points in Michael's essay tomorrow.
Babé
At that time, we had to make a decision: wait for a trustworthy system to be put into place, or try to force things. We took the latter approach. although not without trepidation. One doctor with an international agency warned that we were taking a big risk, but the idea of telling people who were dying, "Just hang on, we'll get you treatment Real Soon Now" just didn't seem to be an acceptable solution. We formed an ARV fund to buy ARVs for activists, as I recounted in the story of Mama Dora. We purposely chose recipients from outside Jakarta - indeed one of the first, in late 2003, was from Merauke, Mama Dora's home in Papua.
He had come to Jakarta for a meeting of people with HIV, fallen sick with a very low CD4 count. So we started him on ART at one of the hospitals here in Jakarta. Luckily MSF had just set up what turned out to be a highly successful HIV treatment program in Merauke, so I rang the MSF doctor to tell her that he was returning to Merauke to continue his therapy. She was quite upset, saying they were not yet ready. But, as they say here, 'apa boleh buat' (what could she do?). They had to become ready fast.
But I must say, I did assume that a workable and working program could be set up in a few years. The fact is that the Indonesian ART program is unable to support only around 10,000 people, while several smaller countries in Africa have in the same time scaled up to provide ARVs to over scores of thousands each - why? I know, there are a different set of challenges, but...
Should we have waited? I think we would still be waiting - and most of those who are (reasonably) complaining now would not be alive...
I'll return to some of the other points in Michael's essay tomorrow.
Babé
Saturday, 3 January 2009
Gone to her death!
The Indonesian AIDS mail list is frequently more like gossip over the fence, with anybody who can write (even though often with difficulty) pitching in his or her two (or 0.2) cents-worth. But sometimes a topic comes up which makes us think. This was the case with a recent one from Robert in Jayapura.
He was asking from guidance: If a transgender person dies, how should he/she be buried? In this case, Robert was referring to a male with female gender identity. If her wishes had not been stated prior to death, how can we make a decision?
Replies came among others from Dr. Nadiar of the National AIDS Commission and from the waria group in Malang. Several raised the problem that, at least for Muslims, there is a different set of prayers at the interment of a male and a female. There's also the problem of washing the body. On the other hand, the Muslim burial shroud is apparently unisex. while in Christian religions, the body might need to be dressed appropriately. But the consensus was that if the diseased had left a will designating a wish to be buried as a women, this wish should be honoured. If no will, then the wishes of the family should be considered, although as one respondent noted, most waria have limited contact with their biological families. In the absence of direction, most felt the burial should be in accordance with physical sex, not sexual identity. But what about someone who had had a sex change operation?
To me, of greater concern is how they are treated in life. The waria group in Jakarta planned to open a nursing home for aging waria, because if they go to a state-run 'panti' (welfare home), they will be accommodated in accordance with their biological sex. We can perhaps imagine what it would be like for someone who had spent her life as a women then has to spend her twilight years as a man.
A number of similar problems arise. A couple of years back we heard that the hospital in Jogja was allowing waria to be admitted to a female ward - although having seen Lenny (a well-known head-scarved waria from Jakarta) in hospital with three-days growth of beard, I'm not sure how well that would go down with other patients in the ward.
One respondent also asked about prisons. Eli has discussed public conveniences. Where would it end?
Interestingly the correspondence did not consider transgenders in the other direction. Perhaps that's because we rarely if ever hear of female transgenders here - do they exist?
On a similar note, it was of interest that the scholarship application for the 8th ICAAP in Sri Lanka provided four options for sex. Still trying to work out what 'other' might include...
As perhaps you may have noted, I try to find an appropriate quote for my subject lines. For those of you you (like me) would have to look it up, here's two stanzas from Thomas Hood's The Bridge of Sighs, from which I took today's title:
He was asking from guidance: If a transgender person dies, how should he/she be buried? In this case, Robert was referring to a male with female gender identity. If her wishes had not been stated prior to death, how can we make a decision?
Replies came among others from Dr. Nadiar of the National AIDS Commission and from the waria group in Malang. Several raised the problem that, at least for Muslims, there is a different set of prayers at the interment of a male and a female. There's also the problem of washing the body. On the other hand, the Muslim burial shroud is apparently unisex. while in Christian religions, the body might need to be dressed appropriately. But the consensus was that if the diseased had left a will designating a wish to be buried as a women, this wish should be honoured. If no will, then the wishes of the family should be considered, although as one respondent noted, most waria have limited contact with their biological families. In the absence of direction, most felt the burial should be in accordance with physical sex, not sexual identity. But what about someone who had had a sex change operation?
To me, of greater concern is how they are treated in life. The waria group in Jakarta planned to open a nursing home for aging waria, because if they go to a state-run 'panti' (welfare home), they will be accommodated in accordance with their biological sex. We can perhaps imagine what it would be like for someone who had spent her life as a women then has to spend her twilight years as a man.
A number of similar problems arise. A couple of years back we heard that the hospital in Jogja was allowing waria to be admitted to a female ward - although having seen Lenny (a well-known head-scarved waria from Jakarta) in hospital with three-days growth of beard, I'm not sure how well that would go down with other patients in the ward.
One respondent also asked about prisons. Eli has discussed public conveniences. Where would it end?
Interestingly the correspondence did not consider transgenders in the other direction. Perhaps that's because we rarely if ever hear of female transgenders here - do they exist?
On a similar note, it was of interest that the scholarship application for the 8th ICAAP in Sri Lanka provided four options for sex. Still trying to work out what 'other' might include...
As perhaps you may have noted, I try to find an appropriate quote for my subject lines. For those of you you (like me) would have to look it up, here's two stanzas from Thomas Hood's The Bridge of Sighs, from which I took today's title:
One more unfortunate,Babé
Weary of breath,
Rashly importunate,
Gone to her death!
Take her up tenderly,
Lift her with care,
Fashioned so slenderly,
Young, and so fair!
Friday, 2 January 2009
Cure the disease and kill the patient
I've written before about The Cure. And I'm sure I'll write about it again. This time it's a thread headed "Does a cure matter?" on the Spiritia Forum in the section reserved for people with HIV to open their hearts. (One problem with these postings is that they use 'bahasa gaul', a language of the younger generation which I frequently have difficulty understanding, but I'll try to convey the intent as I construe it.)
The original poster says that it's not that he doesn't want to be cured, he'd really be grateful for it, but all the busy-ness looking for a cure seems to make little sense. We're now used to living with the virus, and it's impact on our lives is not too heavy. He makes the frequently-made point that what hurts is not the virus but the way he is treated by others. On the other hand, his life is better, he's forced to behave. If there was a cure, might he not go back to using [drugs] again? Go back to his previous life?
Not all of the respondents fully agree, but most express similar sentiments. One notes that in searching for the magic bullet, we leave ourselves open to cheats who just want to make a profit from us.
Another thread, "Changes since I became infected" returns to the theme we often hear, that HIV improved the quality of life. Among 11 improvements, the writer notes that if he hadn't become infected he'd probably already have died of an overdose, or ended up in prison. With tongue in cheek (I hope!), his tenth change is that dogs are afraid to bite him, because they might catch HIV!
Sadly, the most common response in this thread is that HIV has helped them find out who are the real friends. And reflecting the parlous state of ARV supply, one says it's the increased heart beat every month when he goes to fill his prescription.
The really depressing thing is that most of these folk will not die of HIV, cure or no cure. Because of their life-style, and because so many are also infected with viral hepatitis, many will die at an early age from liver failure, lung cancer or heart problems, resulting from smoking, overweight and lack of exercise. Drug side effects may contribute to this mortality, but will likely not be the main cause. Still, at least they'll have the chance to have children and make something of their lives.
I guess the bottom line is that, much more important than a cure for HIV is better hepatitis treatment, and less toxic HIV drugs, together with a cure for smoking!
Babé
The original poster says that it's not that he doesn't want to be cured, he'd really be grateful for it, but all the busy-ness looking for a cure seems to make little sense. We're now used to living with the virus, and it's impact on our lives is not too heavy. He makes the frequently-made point that what hurts is not the virus but the way he is treated by others. On the other hand, his life is better, he's forced to behave. If there was a cure, might he not go back to using [drugs] again? Go back to his previous life?
Not all of the respondents fully agree, but most express similar sentiments. One notes that in searching for the magic bullet, we leave ourselves open to cheats who just want to make a profit from us.
Another thread, "Changes since I became infected" returns to the theme we often hear, that HIV improved the quality of life. Among 11 improvements, the writer notes that if he hadn't become infected he'd probably already have died of an overdose, or ended up in prison. With tongue in cheek (I hope!), his tenth change is that dogs are afraid to bite him, because they might catch HIV!
Sadly, the most common response in this thread is that HIV has helped them find out who are the real friends. And reflecting the parlous state of ARV supply, one says it's the increased heart beat every month when he goes to fill his prescription.
The really depressing thing is that most of these folk will not die of HIV, cure or no cure. Because of their life-style, and because so many are also infected with viral hepatitis, many will die at an early age from liver failure, lung cancer or heart problems, resulting from smoking, overweight and lack of exercise. Drug side effects may contribute to this mortality, but will likely not be the main cause. Still, at least they'll have the chance to have children and make something of their lives.
I guess the bottom line is that, much more important than a cure for HIV is better hepatitis treatment, and less toxic HIV drugs, together with a cure for smoking!
Babé
Thursday, 1 January 2009
Nowhere to come but back
As you may (or may not) have noticed, I've been very lazy for several months. As I said in my first post, I am not much of a diarist, and I was a bit worried that I could keep it up. I took a holiday in England over the Lebaran holiday, and tried to forget all about Indonesia and AIDS for a couple of weeks; seems I did too good a job of that! Anyway, due to overwhelming request (at least three!), I'll have another go. Probably inauspicious to start again at the New Year; it'll seem like a New Year's resolution, and of course they are never kept for long.
On my way back from London, I stopped off in Singapore for the day to get a new visa. After a number of false starts, and with support from the National AIDS Commission (thanks Ibu Naf and Mbak Ria!), I finally got approval for a 12-month multiple-entry social-cultural visa from Immigration in Jakarta. As normal, the visa had to be issued outside Indonesia, so I chose Singapore. I arrived early in the morning, was met by my old boss from the 70's, George King (who now lives on Sentosa) at the airport and went straight to the Embassy, filled in the form, and hoped. I then left with George to spend the day with him and his wife, Iis. Amazingly, the visa was ready for collection at 2 p.m., so we then had some tea, and back to the airport for the evening flight to Jakarta.
It's always difficult to get clear information on these things, but the visa appeared to be valid for multiple entries up to one year from the first entry. with a maximum of 60 days stay on each visit. This seems to work; I left 59 days later for Dili (more on that later), and had no difficulty (apart form an hour's queuing at Denpasar) entering Indonesia again.
Not sure if the 60 days can be extended without leaving the country, although if necessary I could do another quick flit to Singapore (or a longer one: the King's always do me proud when I visit!). But in January I'm planning to attend the 12th Bangkok HIV Symposium organised by HIVNAT, so that means I'll be OK 'til March. Just hope we don't get stranded in Bangkok; seems to be brewing up again!
OK, I'll report on some of my HIV-related adventures since September later. In the meantime, may I wish my readers (all three of them?) a Peaceful, if doubtfully Prosperous, New Year!
Babé
On my way back from London, I stopped off in Singapore for the day to get a new visa. After a number of false starts, and with support from the National AIDS Commission (thanks Ibu Naf and Mbak Ria!), I finally got approval for a 12-month multiple-entry social-cultural visa from Immigration in Jakarta. As normal, the visa had to be issued outside Indonesia, so I chose Singapore. I arrived early in the morning, was met by my old boss from the 70's, George King (who now lives on Sentosa) at the airport and went straight to the Embassy, filled in the form, and hoped. I then left with George to spend the day with him and his wife, Iis. Amazingly, the visa was ready for collection at 2 p.m., so we then had some tea, and back to the airport for the evening flight to Jakarta.
It's always difficult to get clear information on these things, but the visa appeared to be valid for multiple entries up to one year from the first entry. with a maximum of 60 days stay on each visit. This seems to work; I left 59 days later for Dili (more on that later), and had no difficulty (apart form an hour's queuing at Denpasar) entering Indonesia again.
Not sure if the 60 days can be extended without leaving the country, although if necessary I could do another quick flit to Singapore (or a longer one: the King's always do me proud when I visit!). But in January I'm planning to attend the 12th Bangkok HIV Symposium organised by HIVNAT, so that means I'll be OK 'til March. Just hope we don't get stranded in Bangkok; seems to be brewing up again!
OK, I'll report on some of my HIV-related adventures since September later. In the meantime, may I wish my readers (all three of them?) a Peaceful, if doubtfully Prosperous, New Year!
Babé
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