How many HIV-infected people are there in Indonesia? The general consensus among the experts is around 300,000. I have noted before that Malaysia, with one tenth of the population of Indonesia, had identified around 70,000 cases of HIV infection. It thus seems reasonable to guess (as a non-expert) that Indonesia had at least 350,000 cases.
Now we have another expert, our friend Dr. Ronald Jonathan, quoted suggesting that by next year, there will be five million (yes, six zeros!) cases by next year, in only 300 of the almost 500 districts in Indonesia (Five million HIV/AIDS cases in Indonesia by 2010). Interestingly, only an English-language version of the report appears on the Antara web site.
I've just talked to Dr. Ronald. He tells me that he was presenting figures of worst-case scenarios from several years back. He was not at the time aware that the Antara reporter was present, but when he was later interviewed, he corrected the reporter's mis-impression, and requested that it not be published. Seems Antara ignored this, and the report was picked up and published in the Jakarta Post yesterday.
On the other hand, at a meeting a few days back, I heard that a new 'official' estimate is being prepared, which may end up suggesting even an even lower figure than the 300,000. Sadly, the surveillance efforts here are very limited, very infrequent, and with questionable samples. So the fact is that we have little idea if it's 200,000 or two million.
Babé
Wednesday, 18 November 2009
Sunday, 15 November 2009
My actions are my ministers
The furore over the appointment of Endang R. Sedyaningsih as Minister of Health seems to have died down a little. I think that to most of us in the AIDS world her appointment is very welcome news. Five years of a xenophobic minister, who declined to talk of harm reduction at a cabinet meeting on AIDS apparently because she didn't know what it was, have done little to enhance the response to HIV in Indonesia.
Mbak Endang was one of the earliest Indonesian AIDS activists. Back in 1996, she collaborated with Pandu Riono to set up the first Indonesian-language AIDS mail list, AIDS-INA. I ran into her at many meetings in the late 90's, and she was always pressing for a broad-based response.
Many have probably forgotten that Ibu Endang was among the earliest supporters of the concept of harm reduction. It was back in December 1999 that she published an op-ed article "AIDS di Indonesia: Ke Mana (AIDS in Indonesia: Going Where?)" on this in the Kompas Daily. In the article, she noted:
Welcome, Ibu Endang!
Babé
Mbak Endang was one of the earliest Indonesian AIDS activists. Back in 1996, she collaborated with Pandu Riono to set up the first Indonesian-language AIDS mail list, AIDS-INA. I ran into her at many meetings in the late 90's, and she was always pressing for a broad-based response.
Many have probably forgotten that Ibu Endang was among the earliest supporters of the concept of harm reduction. It was back in December 1999 that she published an op-ed article "AIDS di Indonesia: Ke Mana (AIDS in Indonesia: Going Where?)" on this in the Kompas Daily. In the article, she noted:
One group with high risk behaviour is injecting drug users (IDU), whose numbers continue to increase. Anecdotal data that we are starting to collect indicate a yellow signal to the developing spread of HIV/AIDS in this group (three HIV positive from 35 young people in a rehab program, 3% of the total of drug users under treatment). Sharing needles is customary among this group. Actually this behaviour is a very effective way to spread HIV. As a result, we expect that the number of cases of HIV/AIDS among IDU will jump exponentially in the near future. In anticipation of this, perhaps it is time to consider unconventional efforts to reduce risk, such as providing sterile needles and teaching sterilization of needles (my translation).Remember, this was ten years ago, when even the WHO was doubtful that an IDU-driven epidemic in Indonesia was likely, when the concept of harm reduction was far from acceptance even among the experts, and needle exchange was a taboo subject in most of the world.
Welcome, Ibu Endang!
Babé
Saturday, 14 November 2009
Powerful amidst peers
I think I've mentioned before that I've been working with the AusAID-funded HIV Cooperation Program for Indonesia (HCPI) on the response to HIV in the prison system in Java and Bali. One focus has been to support the 2005-2009 National Strategy on HIV in Prisons in Indonesia, which (among other elements) called for "Creating peer network as form of support and care for HIV positive among prisoners/detainee."
Dhayan, one of my colleagues in Spiritia (and an HIV-infected ex-prisoner), has been working with me on this. Together we have visited ten prisons, meeting with staff and prisoners, including many who know that they are HIV-infected. The aim has been to look into how peer support groups can be formed and developed in this environment, and to prepare a manual to assist in this process. In fact, we found that support groups had already been formed in around half of the prisons we visited. This helped us to validate our ideas, and provided useful input.
At one of the prisons, Banceuy Narcotics Prison in Bandung, we found the process was very well advanced. Partly this was due to the very strong support from the prison governor, Pak Ilham, who earlier got his 'baptism' in responding to HIV as governor of the Kerobokan prison in Bali. This prison was one of the first in Indonesia to identity HIV as a problem. Pak Ilham has now used this experience to nurture a really supportive and caring regime in Banceuy.
During our last visit to Banceuy, aimed at reviewing the draft manual, we noted that much of what was being achieved in responding to HIV in Indonesian prisons was not well appreciated, even in Indonesia, let alone among the international community. We suggested to Pak Ilham that he might encourage reporting by the media, particularly referring to the Jakarta Post, the foremost English-language daily in Indonesia.
Don't know if this was the cause, but a few days back, we were very pleased to see an article 'Penitentiary to establish peer group for inmates' in the Post. The name of the support group there is 'Banodis', standing for 'Banceuy No Discrimination', and members of the group do indeed report that discrimination is extremely rare in that prison.
I've noted before, that despite facing huge challenges, the Indonesian prison authorities are dedicated to developing cutting-edge solutions. Peer support is only one of these.
Babé
Dhayan, one of my colleagues in Spiritia (and an HIV-infected ex-prisoner), has been working with me on this. Together we have visited ten prisons, meeting with staff and prisoners, including many who know that they are HIV-infected. The aim has been to look into how peer support groups can be formed and developed in this environment, and to prepare a manual to assist in this process. In fact, we found that support groups had already been formed in around half of the prisons we visited. This helped us to validate our ideas, and provided useful input.
At one of the prisons, Banceuy Narcotics Prison in Bandung, we found the process was very well advanced. Partly this was due to the very strong support from the prison governor, Pak Ilham, who earlier got his 'baptism' in responding to HIV as governor of the Kerobokan prison in Bali. This prison was one of the first in Indonesia to identity HIV as a problem. Pak Ilham has now used this experience to nurture a really supportive and caring regime in Banceuy.
During our last visit to Banceuy, aimed at reviewing the draft manual, we noted that much of what was being achieved in responding to HIV in Indonesian prisons was not well appreciated, even in Indonesia, let alone among the international community. We suggested to Pak Ilham that he might encourage reporting by the media, particularly referring to the Jakarta Post, the foremost English-language daily in Indonesia.
Don't know if this was the cause, but a few days back, we were very pleased to see an article 'Penitentiary to establish peer group for inmates' in the Post. The name of the support group there is 'Banodis', standing for 'Banceuy No Discrimination', and members of the group do indeed report that discrimination is extremely rare in that prison.
I've noted before, that despite facing huge challenges, the Indonesian prison authorities are dedicated to developing cutting-edge solutions. Peer support is only one of these.
Babé
Friday, 13 November 2009
Sweet retired solitude
Some of you may be aware that, since 30th September, I've given up full-time work with Spiritia. I'm still doing occasional work as a volunteer, particularly to maintain the web site. I'm also continuing to work for with the AusAID-funded HIV Cooperation Program for Indonesia (HCPI) as a consultant, at least until the end of the year. Hopefully there will opportunities to continue this next year.
However, I do intend to spend more time in the UK. I had a really enjoyable couple of weeks there in September, partly staying with my sister between Reading and Newbury, but also spending four days hiking in Exmoor. During that time, I hardly saw a soul all day - a very pleasant change from the wall-to-wall people here. There's so much of the British Isles I've always wanted to visit, so I plan to start to address this starting next Spring.
Meanwhile, I'm spending much of my time with the prisons. I'll write more about this tomorrow. There's still plenty of time for more adventures. And hopefully I'll have more time to write...
Babé
However, I do intend to spend more time in the UK. I had a really enjoyable couple of weeks there in September, partly staying with my sister between Reading and Newbury, but also spending four days hiking in Exmoor. During that time, I hardly saw a soul all day - a very pleasant change from the wall-to-wall people here. There's so much of the British Isles I've always wanted to visit, so I plan to start to address this starting next Spring.
Meanwhile, I'm spending much of my time with the prisons. I'll write more about this tomorrow. There's still plenty of time for more adventures. And hopefully I'll have more time to write...
Babé
Thursday, 12 November 2009
Good bye, Uncle Bob!
Sadly another loss to report, this time not directly caused by HIV. Bob Monkhouse, known to his friends and many, many 'children' as Uncle Bob, died early this week in Bali.
Bob had been in Indonesia since at least the mid 1970's. At some stage he opened a bar (I think it was the Pink Panther) in Kuta. I'm sure he'll forgive me for noting that, like many in that situation, he became too fond of his own wares. The upshot was that he formed an Alcoholics Anonymous group in Bali. This group continues to meet.
In the late 90's, it was natural that he should feel drawn to respond more directly to addiction. His first approach was to form the Bali Health Foundation (Yayasan Kesehatan Bali, or Yakeba as it soon became known). Yakeba set up a rehab centre for addicts in Denpasar. With growing demand, this was moved to some cottages in a lovely spot in the Balien valley, near Tabanan. Rosy, one of the early residents, remembers it as being very free, with no doors. Uncle Bob was always quick to forgive the inevitable thieves.
As news of HIV among drug users started to spread, Bob decided this demanded action. But like most of us at that time, he was no well informed about HIV, and felt the best approach was to get all the eighteen residents at the rehab centre tested. The results arrived on New Year's Day 2001: eight were positive! Rosy was one of those who received this terrible New Year's present; she recalls that they all had no idea what that meant, just that they would probably die within days or weeks.
Bob searched for help in responding. Fortunately, he quickly contacted the AusAID-funded HIV program (IHPCP) in Bali. At that stage, the extent of the HIV epidemic among injecting drug users (IDU) in Indonesia was only just beginning to become apparent, but the news from Yakeba was a real shock. By chance, I happened to be visiting the IHPCP office on 3rd January 2001, and was invited into a meeting with Bob (I think Rosy was also there), to try to decide what to do. One upshot was to arrange for them to meet with Suzana Murni, the founder of Spiritia. Meeting with a 'peer' who had been living with HIV since 1995, greatly assisted them to come to terms with their infection.
As a result, it was natural that the eight should form a peer support group in Yakeba. This group, now known as Hidup ('life', but also playing on the abbreviation IDU) still continues to support many people infected with HIV through drug use in Bali.
As the extent of the drug-driven HIV epidemic in Bali became more apparent, Bob expanded Yakeba's activities. Surveillance in the Kerobokan prison identified a huge problem there, so outreach to addicts in that prison was an early activity. As a result of these efforts by Yakeba and other groups, stigma and discrimination against those with HIV in that prison was pretty much eradicated by mid 2004.
This was followed by outreach to schools, and the initiation of a harm reduction program in 2003. When the methadone program trial was started in the Sanglah hospital, Yakeba took on the task of finding the first clients. Later, Yakeba also started a program of outreach to gays in Kuta.
Rosy remembers Uncle Bob as having a kind heart, willing to help anybody. While not being 'religious', he had strong spiritual convictions, with a deep trust in God.
"Uncle was our father," Rosy told me yesterday. "He gave us dignity."
Uncle Bob, you deserve your rest. Give us strength to carry on your legacy.
Babé
PS. Please respond if you have your own memories of Uncle Bob, or corrections to my fading memories.
PPS. There is an obit of Bob on the BaliDiscovery web site <Bob Monkhouse, 1941-2009> which provides a little more history.
Bob had been in Indonesia since at least the mid 1970's. At some stage he opened a bar (I think it was the Pink Panther) in Kuta. I'm sure he'll forgive me for noting that, like many in that situation, he became too fond of his own wares. The upshot was that he formed an Alcoholics Anonymous group in Bali. This group continues to meet.
In the late 90's, it was natural that he should feel drawn to respond more directly to addiction. His first approach was to form the Bali Health Foundation (Yayasan Kesehatan Bali, or Yakeba as it soon became known). Yakeba set up a rehab centre for addicts in Denpasar. With growing demand, this was moved to some cottages in a lovely spot in the Balien valley, near Tabanan. Rosy, one of the early residents, remembers it as being very free, with no doors. Uncle Bob was always quick to forgive the inevitable thieves.
As news of HIV among drug users started to spread, Bob decided this demanded action. But like most of us at that time, he was no well informed about HIV, and felt the best approach was to get all the eighteen residents at the rehab centre tested. The results arrived on New Year's Day 2001: eight were positive! Rosy was one of those who received this terrible New Year's present; she recalls that they all had no idea what that meant, just that they would probably die within days or weeks.
Bob searched for help in responding. Fortunately, he quickly contacted the AusAID-funded HIV program (IHPCP) in Bali. At that stage, the extent of the HIV epidemic among injecting drug users (IDU) in Indonesia was only just beginning to become apparent, but the news from Yakeba was a real shock. By chance, I happened to be visiting the IHPCP office on 3rd January 2001, and was invited into a meeting with Bob (I think Rosy was also there), to try to decide what to do. One upshot was to arrange for them to meet with Suzana Murni, the founder of Spiritia. Meeting with a 'peer' who had been living with HIV since 1995, greatly assisted them to come to terms with their infection.
As a result, it was natural that the eight should form a peer support group in Yakeba. This group, now known as Hidup ('life', but also playing on the abbreviation IDU) still continues to support many people infected with HIV through drug use in Bali.
As the extent of the drug-driven HIV epidemic in Bali became more apparent, Bob expanded Yakeba's activities. Surveillance in the Kerobokan prison identified a huge problem there, so outreach to addicts in that prison was an early activity. As a result of these efforts by Yakeba and other groups, stigma and discrimination against those with HIV in that prison was pretty much eradicated by mid 2004.
This was followed by outreach to schools, and the initiation of a harm reduction program in 2003. When the methadone program trial was started in the Sanglah hospital, Yakeba took on the task of finding the first clients. Later, Yakeba also started a program of outreach to gays in Kuta.
Rosy remembers Uncle Bob as having a kind heart, willing to help anybody. While not being 'religious', he had strong spiritual convictions, with a deep trust in God.
"Uncle was our father," Rosy told me yesterday. "He gave us dignity."
Uncle Bob, you deserve your rest. Give us strength to carry on your legacy.
Babé
PS. Please respond if you have your own memories of Uncle Bob, or corrections to my fading memories.
PPS. There is an obit of Bob on the BaliDiscovery web site <Bob Monkhouse, 1941-2009> which provides a little more history.
Sunday, 7 June 2009
Pedestaled in triumph
Some of you may have followed the story of the young (nursing) mother who was remanded in prison on the charge of defaming a private hospital in the Jakarta area. A test at the hospital lab had indicated she had very low platelets, and as a result she was diagnosed with dengue and was admitted and infused. But the next day, it appeared that her platelets were in fact normal, and the diagnosis was incorrect.
She moved to another hospital and was correctly diagnosed and treated. Following this, she apparently tried to view her medical record at the original hospital, but this was allegedly refused. She then sent a private E-mail to a friend, indicating that she felt that she had been treated badly. This E-mail was then forwarded to a mail list, resulting in wide distribution. As a result, the hospital took legal action, and she was arrested by the police and locked up.
A number of things about this case have upset many in Indonesia. First, how could the doctors in the hospital concerned allow such a thing to happen? Should they not have put pressure on the hospital management to be more compassionate - do we not expect all our doctors to show that quality? Second, the Minister of Health washed her hands of the problem, saying she has no control over private hospitals.
Although the law on Doctors' Practice (no. 29/2004) very clearly states that patients own the contents of their medical records, and that they are entitled to a second opinion, requests for both in Indonesia are routinely effectively denied.
As the BMJ pointed out several years back, Doctors will get off their pedestals when patients get off their knees. One of our efforts is indeed aimed at trying to get HIV-infected people to get up off their knees and become empowered patients. But actions like this will set back the whole process.
Babé
She moved to another hospital and was correctly diagnosed and treated. Following this, she apparently tried to view her medical record at the original hospital, but this was allegedly refused. She then sent a private E-mail to a friend, indicating that she felt that she had been treated badly. This E-mail was then forwarded to a mail list, resulting in wide distribution. As a result, the hospital took legal action, and she was arrested by the police and locked up.
A number of things about this case have upset many in Indonesia. First, how could the doctors in the hospital concerned allow such a thing to happen? Should they not have put pressure on the hospital management to be more compassionate - do we not expect all our doctors to show that quality? Second, the Minister of Health washed her hands of the problem, saying she has no control over private hospitals.
Although the law on Doctors' Practice (no. 29/2004) very clearly states that patients own the contents of their medical records, and that they are entitled to a second opinion, requests for both in Indonesia are routinely effectively denied.
As the BMJ pointed out several years back, Doctors will get off their pedestals when patients get off their knees. One of our efforts is indeed aimed at trying to get HIV-infected people to get up off their knees and become empowered patients. But actions like this will set back the whole process.
Babé
Saturday, 6 June 2009
All sorts and conditions of men
My friend and colleague, Theo Smart, has embarrassed me into returning to this task. Theo edits the HATIP (HIV/AIDS Treatment in Practice) newsletter for NAM (don't ask what that means; it used to be National AIDS Manual, but now like BP it's just an acronym). For several years (almost since its inception) I've been one of the review panel for HATIP, among a very distinguished list of clinicians, including Graeme Meintjes from South Africa, and Anthony Harries, formerly from Malawi.
Frequently HATIP's topics are above my head and outside my experience (such as 'Managing meningitis in people with HIV in resource-limited settings'), but sometimes Theo comes up with a topic which I can contribute to. Last week he circulated some initial thoughts on an article about services for men who have sex with men (MSM). It became clear that (as is so often), although the term MSM was coined to be more inclusive and not just limited to those who identify as gay. the focus was mainly towards gays and bisexuals, with little emphasis on transsexuals.
I have been involved with the waria (transsexual) community in Indonesia since 1995, when I first met up with Gaya Celebes in Makassar, a group doing outreach to this community. Coincidentally, at the same time I met with Tom Boellstorff (almost the only person to comment on my blogs; thanks Tom!). Although based in the US, Tom has had deep involvement with waria in Indonesia since the early 90's, and his recent book 'The Gay Archipelago: Sexuality and Nation in Indonesia" is the first to explore the lives of gay men in Indonesia.
From Tom and the dedicated volunteers at Gaya Celebes, together with contact with waria groups throughout the country, I have also been lucky enough to get some insight into the challenges faced by waria in Indonesia. For obvious reasons, they are extremely vulnerable to HIV infection, and as I have noted previously, in many groups they are 'queuing up to die.' So as I say, Theo hit my hot-button, and I responded by describing some of my experience with waria, and asking him not to ignore transsexuals when discussing MSM. Theo has just posted this to the HATIP blog ('Reaching the Waria of Indonesia'), at the same time kindly promoting this blog. So I must make a renewed effort to keep up with the news here.
Babé
Frequently HATIP's topics are above my head and outside my experience (such as 'Managing meningitis in people with HIV in resource-limited settings'), but sometimes Theo comes up with a topic which I can contribute to. Last week he circulated some initial thoughts on an article about services for men who have sex with men (MSM). It became clear that (as is so often), although the term MSM was coined to be more inclusive and not just limited to those who identify as gay. the focus was mainly towards gays and bisexuals, with little emphasis on transsexuals.
I have been involved with the waria (transsexual) community in Indonesia since 1995, when I first met up with Gaya Celebes in Makassar, a group doing outreach to this community. Coincidentally, at the same time I met with Tom Boellstorff (almost the only person to comment on my blogs; thanks Tom!). Although based in the US, Tom has had deep involvement with waria in Indonesia since the early 90's, and his recent book 'The Gay Archipelago: Sexuality and Nation in Indonesia" is the first to explore the lives of gay men in Indonesia.
From Tom and the dedicated volunteers at Gaya Celebes, together with contact with waria groups throughout the country, I have also been lucky enough to get some insight into the challenges faced by waria in Indonesia. For obvious reasons, they are extremely vulnerable to HIV infection, and as I have noted previously, in many groups they are 'queuing up to die.' So as I say, Theo hit my hot-button, and I responded by describing some of my experience with waria, and asking him not to ignore transsexuals when discussing MSM. Theo has just posted this to the HATIP blog ('Reaching the Waria of Indonesia'), at the same time kindly promoting this blog. So I must make a renewed effort to keep up with the news here.
Babé
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