The HIV epidemic seems to be built upon figures. Funding, prevalence, case reports, ages, as well as CD4 counts and viral loads. And too often we make crucial decisions based upon less than accurate figures.
Case in point: the decision to start antiretroviral therapy is often dependent upon the CD4 count. We meet the criteria if our CD4 count is less than 200. Nice and simple. But as John Bartlett and Joel Gallant of Johns Hopkins note in 'The Medical Management of HIV Infection', if our measured CD4 count is 200 we can be 95% confident that the actual value is between 118 and 337! This is never discussed in the current hot debate over changing the criteria to allow starting at 350, but it does seem quite relevant. Of course, we are advised never to take any decision based on only one test, but given that many in Indonesia find difficulty in affording one CD4 test a year, few people are able to follow that advice.
How about bigger decisions, such as by the national policy makers? The national estimates are based on a rigorous build up from each of more than 450 districts and municipalities in Indonesia. They all (we are told) estimated the number of sex workers, their clients and their partners, the number of gays and waria, the number of drug users and so on, then estimated the prevalence in each 'risk group'. Difficult to argue with the figures. Trouble is, the total (around 270,000), seems rather low. Malaysia, with around one tenth of the population of Indonesia, but in many other ways surely quite similar, has diagnosed around 70,000 cases of HIV infection, and they estimate this as half of the total. Thus it does not seem to be unreasonable to guess that Indonesia would have at least five times the number of cases as Malaysia. That would be 350,000. So far, no one seems to have found the flaw in this logic.
Of course, at least we can rely on the reported figures, no? Trouble is, as Dr Adi Sasongko (a long-term AIDS activist) recently pointed out, no cases have been reported from Indramayu in West Java. Indramayu is notorious as the source of many women reputedly sold by their families for sex work in Batam. But when they are found to be HIV-positive during raids there, they are returned back to their homes in Indramayu. Everyone 'knows' they are there; but they are not officially counted.
Similarly, while the number of reported cases in Papua province has increased 2.5 times to 2,382 since it split from West Papua in 2006, the number of cases reported from West Papua has not changed by even one case; it remains at 58! Perhaps congratulations due to the West Papua administration for totally controlling the epidemic?
Finally, the Indonesian CDC publishes the total reported cases every quarter. The total at December 2008 was 16,110. Around only 5% of the estimated total. But wait! The same CDC also occasionally reports the number of people with HIV on treatment. The total reported as 'followed in HIV care' as at December 2008 was 36,628! There seems to be a discrepancy, but no one seems to notice it.
The figures clearly don't always tell the truth...
Babé
Friday 30 January 2009
Wednesday 28 January 2009
No motion has she now, no force
It's ironic that, just after I write about how antiretroviral therapy (ART) has extended life, we get news that one of the 'old timers' has passed away. Even though she went public about her infection (or actually was 'outed') many years ago, I still don't feel comfortable to give her name, but some may know who I am referring to when I call her 'N" from South Sulawesi.
I'm not sure exactly when she was diagnosed, although it was certainly in the 90's, because she attended the first national meeting of people living with HIV, in Bali in 1998. She was one of three women 'caught' in a raid and forcibly tested - in the name of 'unlinked anonymous' surveillance.
When she was married, her photo was displayed in a local tabloid, under the headline "AIDS Bride". This caused her to become well-known, and as a result the couple were seven times forcibly evicted from their rented lodgings. In the end, a doctor with a heart allowed her to stay in his house, but then he was transferred, and once again, she was on the move.
As the veteran AIDS journalist, Syaiful Harahap, put it at the time, "this demonstrates the harm that results from efforts to track down HIV-positive people. ... The government tries to find the positive people, but when it does, it doesn't care about the effects..."
Among other petty inconveniences she experienced was one caused by the fact that she had a contraceptive implant. This had passed its expiry date (I think it was a three-year one), so she wanted to have it removed. But no one was willing remove it. She was shuffled from clinic to clinic, from doctor to doctor, but all found some excuse to avoid helping her once they knew she was HIV-positive. I'm not sure that it hasn't gone with her to her grave.
N served for a period as the Indonesian representative on the Asia-Pacific Network of HIV-positive people, APN+, although sadly her poor English capability limited her effectiveness in that position. It's a pity that lack of English so often effectively excludes otherwise well-qualified candidates for regional and global representation.
I hadn't met N for some years. Towards the end, she was living somewhat off the beaten track, and she probably got somewhat forgotten. It's very sad to hear of her passing.
Babé
I'm not sure exactly when she was diagnosed, although it was certainly in the 90's, because she attended the first national meeting of people living with HIV, in Bali in 1998. She was one of three women 'caught' in a raid and forcibly tested - in the name of 'unlinked anonymous' surveillance.
When she was married, her photo was displayed in a local tabloid, under the headline "AIDS Bride". This caused her to become well-known, and as a result the couple were seven times forcibly evicted from their rented lodgings. In the end, a doctor with a heart allowed her to stay in his house, but then he was transferred, and once again, she was on the move.
As the veteran AIDS journalist, Syaiful Harahap, put it at the time, "this demonstrates the harm that results from efforts to track down HIV-positive people. ... The government tries to find the positive people, but when it does, it doesn't care about the effects..."
Among other petty inconveniences she experienced was one caused by the fact that she had a contraceptive implant. This had passed its expiry date (I think it was a three-year one), so she wanted to have it removed. But no one was willing remove it. She was shuffled from clinic to clinic, from doctor to doctor, but all found some excuse to avoid helping her once they knew she was HIV-positive. I'm not sure that it hasn't gone with her to her grave.
N served for a period as the Indonesian representative on the Asia-Pacific Network of HIV-positive people, APN+, although sadly her poor English capability limited her effectiveness in that position. It's a pity that lack of English so often effectively excludes otherwise well-qualified candidates for regional and global representation.
I hadn't met N for some years. Towards the end, she was living somewhat off the beaten track, and she probably got somewhat forgotten. It's very sad to hear of her passing.
Babé
Monday 26 January 2009
Natural selection
In the training just completed, as usual we discussed how to select recipients of antiretroviral therapy (ART). Of course, in an ideal world, everyone who needed ART (or at least those who meet the criteria) would get it free of charge. And currently that is the situation in Indonesia, although of course not in every third world country. But according to the Indonesian communicable diseases directorate (CDC), today less than 11,000 people are being treated.
A couple of years back, Dr Sigit, the head of the AIDS Sub-Directorate at the CDC, estimated that by 2010, 100,000 people would need treatment. Given an estimated 273,000 people living with the disease in Indonesia, that number is not unlikely. Of course it is most unlikely that the current testing policy will identify even half of this number, but even that would suggest a possible fivefold increase in those on ART by the end of next year. Such a scale up is by no means impossible; several countries in Africa have increased their numbers on ART more quickly. But what about funding?
We are told that the MoH now pays Kimia Farma Rp 400,000 per person per month for the first line regimen. That amounts to more than US$ 400 per person per year. Thus currently the government is paying moer than US$ 4 million a year for first line drugs - and having difficulty finding the cash. Only a few months back, Kimia Farma stopped shipping the drugs, because they could no longer afford to provide credit to the government - who owed them for almost 9000 patient-months of one drug. A disaster was only avoided by the National AIDS Commission paying some of the bill.
So, if we have difficulty supplying the drugs for 10,000 people, how on earth will be find the cash for 50,000? Unless someone comes up with a solution, there will have to be some rationing, which means selection, which means that someone must decide who lives and who dies. In our training session, which is aimed at opening the minds of some of the activists, we discuss some of the options for selection: priority for pregnant mothers, for example, or for families with young children. We discuss whether the current system of providing ART free to all, regardless of ability to pay, can be sustained, and if not, how we identify those who should contribute. (As an aside, many of the participants spend more than Rp 4 million a year on cigarettes!)
As a theoretical exercise, this session is always interesting. Few participants have thought about this, and for the many who have already suffered through drug shortages, it's anything but theoretical. And does cause some anxiety.
But is this scenario likely? Difficult to tell. The Clinton Foundation claims that it can procure the same first line regimen oat under US150 per person per year. At this price, the current budget could provide ART for more than 25,000 people. And prices continue to dive. In addition, several local administrations are considering some form of funding for ART, and it should be possible to persuade some employers to come to the party. Then there's the insurance companies... If we coordinate all of these sources, we should be able to cope.
On the other hand, an increasing number of people will be needing (still pricey) second-line therapy as their current regimen fails. And every year the number needing ART will increase. The spectre remains...
Babé
A couple of years back, Dr Sigit, the head of the AIDS Sub-Directorate at the CDC, estimated that by 2010, 100,000 people would need treatment. Given an estimated 273,000 people living with the disease in Indonesia, that number is not unlikely. Of course it is most unlikely that the current testing policy will identify even half of this number, but even that would suggest a possible fivefold increase in those on ART by the end of next year. Such a scale up is by no means impossible; several countries in Africa have increased their numbers on ART more quickly. But what about funding?
We are told that the MoH now pays Kimia Farma Rp 400,000 per person per month for the first line regimen. That amounts to more than US$ 400 per person per year. Thus currently the government is paying moer than US$ 4 million a year for first line drugs - and having difficulty finding the cash. Only a few months back, Kimia Farma stopped shipping the drugs, because they could no longer afford to provide credit to the government - who owed them for almost 9000 patient-months of one drug. A disaster was only avoided by the National AIDS Commission paying some of the bill.
So, if we have difficulty supplying the drugs for 10,000 people, how on earth will be find the cash for 50,000? Unless someone comes up with a solution, there will have to be some rationing, which means selection, which means that someone must decide who lives and who dies. In our training session, which is aimed at opening the minds of some of the activists, we discuss some of the options for selection: priority for pregnant mothers, for example, or for families with young children. We discuss whether the current system of providing ART free to all, regardless of ability to pay, can be sustained, and if not, how we identify those who should contribute. (As an aside, many of the participants spend more than Rp 4 million a year on cigarettes!)
As a theoretical exercise, this session is always interesting. Few participants have thought about this, and for the many who have already suffered through drug shortages, it's anything but theoretical. And does cause some anxiety.
But is this scenario likely? Difficult to tell. The Clinton Foundation claims that it can procure the same first line regimen oat under US150 per person per year. At this price, the current budget could provide ART for more than 25,000 people. And prices continue to dive. In addition, several local administrations are considering some form of funding for ART, and it should be possible to persuade some employers to come to the party. Then there's the insurance companies... If we coordinate all of these sources, we should be able to cope.
On the other hand, an increasing number of people will be needing (still pricey) second-line therapy as their current regimen fails. And every year the number needing ART will increase. The spectre remains...
Babé
Saturday 24 January 2009
An informed community is a strong community
There's no doubt that the anti-HIV drugs that have been available in Indonesia for several years now have made an immense difference in our community. It used to be that six months or a year after we held any meeting, at least one third of the participants had died. Continuity was almost impossible, because the faces were always changing.
Now it's very different. In some cases, meetings have become 'same old, same old', almost no new faces, just the 'old guard', who are indeed growing older - and broader round the waist!
But how long will this last? There are a number of red flags. Perhaps the greatest threat will be caused by the high prevalence of viral hepatitis co-infection among those with HIV in Indonesia - I'll return to this some other time.
The other red flag should be more controllable: poor adherence to antiretroviral therapy (ART) and high dropout rates - at the last official report, over 10%. I'm frequently told that adherence is being monitored and is high, but I see few signs of effective monitoring, but more signs that adherence is beginning to drop. Why?
Of course, there are many reasons. But among them are lack of information and inadequate community involvement. With these two points in mind, we place considerable emphasis on what we call 'treatment educator training.' This is carried out mainly by the community for members of peer support groups. I've just carried out such training in Jogjakarta, with 15 participants from five groups. In this basic three to four day course, we talk about how HIV replicates, how ART inhibits this replication, why resistance to the drugs occurs, and how this can be prevented by adherence of more than 95%. We also discuss our role in informing our community and helping those on treatment to achieve, and more important, to sustain this high rate of adherence.
It is accepted here that doctors have at most five to ten minutes per patient. Clearly this offers no time to address adherence, let alone to assess its level. In any case, this task is probably best carried out by the peers, who are themselves on therapy. So ensuring that this community are informed is crucial...
Babé
Now it's very different. In some cases, meetings have become 'same old, same old', almost no new faces, just the 'old guard', who are indeed growing older - and broader round the waist!
But how long will this last? There are a number of red flags. Perhaps the greatest threat will be caused by the high prevalence of viral hepatitis co-infection among those with HIV in Indonesia - I'll return to this some other time.
The other red flag should be more controllable: poor adherence to antiretroviral therapy (ART) and high dropout rates - at the last official report, over 10%. I'm frequently told that adherence is being monitored and is high, but I see few signs of effective monitoring, but more signs that adherence is beginning to drop. Why?
Of course, there are many reasons. But among them are lack of information and inadequate community involvement. With these two points in mind, we place considerable emphasis on what we call 'treatment educator training.' This is carried out mainly by the community for members of peer support groups. I've just carried out such training in Jogjakarta, with 15 participants from five groups. In this basic three to four day course, we talk about how HIV replicates, how ART inhibits this replication, why resistance to the drugs occurs, and how this can be prevented by adherence of more than 95%. We also discuss our role in informing our community and helping those on treatment to achieve, and more important, to sustain this high rate of adherence.
It is accepted here that doctors have at most five to ten minutes per patient. Clearly this offers no time to address adherence, let alone to assess its level. In any case, this task is probably best carried out by the peers, who are themselves on therapy. So ensuring that this community are informed is crucial...
Babé
Wednesday 21 January 2009
...require then to eat it with bitter herbs
The subject of herbal therapy is always 'hot' in Indonesia. As I have noted before, we frequently receive questions about AIDS 'cures'. There's now an ongoing discussion in the Healthcare Journalists mail list here, about suggestions, made on a TV program, that cervical cancer can be cured by herbal therapy.
I'm more than a little interested in this topic, because the wife of my driver (who after more than ten years service has become more of a family member) is now suffering from late stage cervical cancer. She has been 'seen' at the Dharmais Cancer Hospital, but it seems that either the cost of treatment was deemed too high, or perhaps the doctors there 'raised their hands' - I don't know and I don't like to press too hard. Anyway, the family decided to rely on herbal therapy.
The discussion on the mail list was started by Dr Erik Tapan, well known as the 'Internet Doctor', among other reasons for starting a mail list for doctors more than a decade ago, I think. He reported that a herbalist on the TV program maintained that the 'jamu' he was promoting was effective and safe. But what upset Dr Erik was that a doctor from the Indonesian Cancer Foundation (YKI), who appeared on the program as an expert, did not refute these claims, giving the viewer that impression that YKI supports the use of herbal therapy for cervical cancer.
This triggered a defensive response from one herbalist, who questioned the objectivity of Dr Erik. He claimed, as we often hear in connection with AIDS, 'God did not forget to create medicines for humankind.' If He creates an illness, He will also create a cure.
The discussion continues. Dr Erik has made the point (which makes me weep when I think of my driver's wife) that relatively simple conventional treatment can cure more than 96% of cases of cervical cancer found at an early stage. But this cure rate drops off rapidly as cancer progresses, to below 20% at stage IV, and that only after expensive and most unpleasant chemotherapy or radiation.
Another responder (an oncologist) noted that he hates to see his patients who are diagnosed with treatable Stage II cervical cancer leave, and return later after herbal therapy, having progressed to stage IV.
"Alternative" therapies always have an edge here. They are cheaper, more accessible, and the herbalists usually do a much better job of communicating than most doctors - no five minute examinations for them! And they often, perhaps not explicitly, promise a cure. As for cervical cancer, so also for AIDS.
Of course, prevention of both conditions is cheap and simple: condoms for HIV, Pap smear for cervical cancer, Sadly neither are commonly used...
Babé
I'm more than a little interested in this topic, because the wife of my driver (who after more than ten years service has become more of a family member) is now suffering from late stage cervical cancer. She has been 'seen' at the Dharmais Cancer Hospital, but it seems that either the cost of treatment was deemed too high, or perhaps the doctors there 'raised their hands' - I don't know and I don't like to press too hard. Anyway, the family decided to rely on herbal therapy.
The discussion on the mail list was started by Dr Erik Tapan, well known as the 'Internet Doctor', among other reasons for starting a mail list for doctors more than a decade ago, I think. He reported that a herbalist on the TV program maintained that the 'jamu' he was promoting was effective and safe. But what upset Dr Erik was that a doctor from the Indonesian Cancer Foundation (YKI), who appeared on the program as an expert, did not refute these claims, giving the viewer that impression that YKI supports the use of herbal therapy for cervical cancer.
This triggered a defensive response from one herbalist, who questioned the objectivity of Dr Erik. He claimed, as we often hear in connection with AIDS, 'God did not forget to create medicines for humankind.' If He creates an illness, He will also create a cure.
The discussion continues. Dr Erik has made the point (which makes me weep when I think of my driver's wife) that relatively simple conventional treatment can cure more than 96% of cases of cervical cancer found at an early stage. But this cure rate drops off rapidly as cancer progresses, to below 20% at stage IV, and that only after expensive and most unpleasant chemotherapy or radiation.
Another responder (an oncologist) noted that he hates to see his patients who are diagnosed with treatable Stage II cervical cancer leave, and return later after herbal therapy, having progressed to stage IV.
"Alternative" therapies always have an edge here. They are cheaper, more accessible, and the herbalists usually do a much better job of communicating than most doctors - no five minute examinations for them! And they often, perhaps not explicitly, promise a cure. As for cervical cancer, so also for AIDS.
Of course, prevention of both conditions is cheap and simple: condoms for HIV, Pap smear for cervical cancer, Sadly neither are commonly used...
Babé
Tuesday 20 January 2009
Prevent drug companies from blocking generic drugs
It is encouraging to see that (almost) President Barack Obama has already promised to focus on the global HIV challenge, in the The Obama-Biden plan to combat global HIV/AIDS. The Obama-Biden plan notes that they believe more must be done to fight HIV/AIDS, malaria and TB. It reminds us that Obama and his wife both publicly had an HIV test in Kenya in 2006. 'to encourage African men and women to be tested for the disease.' Would that this might also encourage Indonesia's president and his wife to do the same.
Obama/Biden plan directly addresses access to generic drugs to treat HIV. It pledges to 'break the stranglehold that a few big drug ... companies have on these life-saving drugs.' Wow! That will be among the most challenging of all the promises he has made. Let's hope he succeeds.
I heard yesterday on NPR that the St. Petersburg Time has set up an 'obameter', to hold him accountable for his promises. They note that he made 510 promises, and I'm not sure all of the promises in the Obama/Biden plan made it into the list. However, Promise No. 72 was to 'Prevent drug companies from blocking generic drugs,' as well as No. 84, to 'Provide $50 billion by 2013 for the global fight against HIV/AIDS,' so at least these will be monitored.
Unfortunately, the plan makes no mention of lifting the HIV-related travel ban in the USA. This was of course not an Obama promise. However, Bob Munk from the AIDS Infonet in New Mexico notes:
Babé
Obama/Biden plan directly addresses access to generic drugs to treat HIV. It pledges to 'break the stranglehold that a few big drug ... companies have on these life-saving drugs.' Wow! That will be among the most challenging of all the promises he has made. Let's hope he succeeds.
I heard yesterday on NPR that the St. Petersburg Time has set up an 'obameter', to hold him accountable for his promises. They note that he made 510 promises, and I'm not sure all of the promises in the Obama/Biden plan made it into the list. However, Promise No. 72 was to 'Prevent drug companies from blocking generic drugs,' as well as No. 84, to 'Provide $50 billion by 2013 for the global fight against HIV/AIDS,' so at least these will be monitored.
Unfortunately, the plan makes no mention of lifting the HIV-related travel ban in the USA. This was of course not an Obama promise. However, Bob Munk from the AIDS Infonet in New Mexico notes:
Patience, folks! We are confident the ban will be lifted by the new Department of Health and Human Services. It will take their action on regulations. We don’t know how high up the list it is...Let's hope...
Babé
Monday 19 January 2009
...pass through the pores of the ocean
After the Symposium in Bangkok last week had finished, I spent an pleasant afternoon with Lia Sciortino. Old Indonesia AIDS hands will remember that she used to work for Ford Foundation here, responsible for reproductive health programs funded by Ford, including HIV. At that time (1995), I was volunteering with the Pelita Ilmu Foundation (YPI), helping to develop programs for support of people living with HIV in Jakarta. Ford agreed to fund the shelter we opened in the Tebet area of Jakarta, as well as the buddy service we developed.
We used to hold buddies meetings on Sunday mornings, and I remember one of the first times Lia joined one of those meetings. She always asked difficult questions, which made us all think. I also remember one meeting in the Ford office, where topic of condom promotion came up. She noted that even then, it was becoming increasingly difficult to talk about condoms, and it certainly hasn't gotten any easier since then.
Our 'friend' Prof. Dadang Hawari had started to promote the idea that latex condoms had pores in them that were big enough to let HIV through. No amount of theoretical or practical proof (such as inflating a condom, and seeing how long it took to deflate) was sufficient to convince him to change his tune. Probably he was not interested in inconvenient facts which did not support his agenda.
The Indonesian Medical Association (IDI) invited him to speak in a debate to defend his position, but he failed to attend. We failed then to come up with a strategy to address his misinformation campaign, and the current generation of condom activists are having no more success, proposing the 'same old same old' that failed a decade ago.
Lia left Ford in around 1998, and I hadn't met her since then. She went to Bangkok to work for the Rockefeller Foundation. But now she's teaching at a couple of universities in Bangkok, as sell as doing consultancy in Indonesia for the World Bank. Her Indonesian husband, O'ong Maryono, is a world expert on Pencak Silat Tradisional Betawi (a traditional Jakarta self-defence martial art - not sure I know how to describe it!), having written a couple of books on the subject.
Lia has also published an number of books, and she was kind enough to give me an inscribed copy of the Indonesian translation of 'CARE-takers of CURE: An Anthropological Study of Health Centre Nurses in Rural Central Java.' The Indonesian version, which was finally published in the middle of last year, is a bit snappier: 'Perawat Puskesmas di Antara Pengobatan & Perawatan.' I'm looking forward to finding time to sit down with this.
[One of advantages of having a unusual name such as Lia Sciortino or O'ong Maryono is that it's easy to find them on the internet. Try googling for Chris Green - you get 8,700,000 hits!]
Babé
We used to hold buddies meetings on Sunday mornings, and I remember one of the first times Lia joined one of those meetings. She always asked difficult questions, which made us all think. I also remember one meeting in the Ford office, where topic of condom promotion came up. She noted that even then, it was becoming increasingly difficult to talk about condoms, and it certainly hasn't gotten any easier since then.
Our 'friend' Prof. Dadang Hawari had started to promote the idea that latex condoms had pores in them that were big enough to let HIV through. No amount of theoretical or practical proof (such as inflating a condom, and seeing how long it took to deflate) was sufficient to convince him to change his tune. Probably he was not interested in inconvenient facts which did not support his agenda.
The Indonesian Medical Association (IDI) invited him to speak in a debate to defend his position, but he failed to attend. We failed then to come up with a strategy to address his misinformation campaign, and the current generation of condom activists are having no more success, proposing the 'same old same old' that failed a decade ago.
Lia left Ford in around 1998, and I hadn't met her since then. She went to Bangkok to work for the Rockefeller Foundation. But now she's teaching at a couple of universities in Bangkok, as sell as doing consultancy in Indonesia for the World Bank. Her Indonesian husband, O'ong Maryono, is a world expert on Pencak Silat Tradisional Betawi (a traditional Jakarta self-defence martial art - not sure I know how to describe it!), having written a couple of books on the subject.
Lia has also published an number of books, and she was kind enough to give me an inscribed copy of the Indonesian translation of 'CARE-takers of CURE: An Anthropological Study of Health Centre Nurses in Rural Central Java.' The Indonesian version, which was finally published in the middle of last year, is a bit snappier: 'Perawat Puskesmas di Antara Pengobatan & Perawatan.' I'm looking forward to finding time to sit down with this.
[One of advantages of having a unusual name such as Lia Sciortino or O'ong Maryono is that it's easy to find them on the internet. Try googling for Chris Green - you get 8,700,000 hits!]
Babé
Sunday 18 January 2009
Conference maketh a ready man
Just back from the 12th Bangkok International Symposium on HIV Medicine, organised by HIV-NAT - the HIV Netherlands Australia Thailand Research Collaboration. This year was the fourth consecutive year that I have attended this Symposium, and each year I have found it - for me - the most useful meeting. It is practical, offering information that is immediately of use, presented by internationally respected experts in their field.
It is of course very medical, and I'd guess the vast majority of participants are doctors or other healthcare professionals. This year, I was accompanied by Caroline from Spiritia and Rika from the Medan-Aceh Partnership, and I'd guess we were among the only members of the 'community' attending. A pity: all such meetings benefit from involvement of the affected community - as was demonstrated very early in the epidemic by the gate-crashers at the first AIDS conference in 1983, which resulted in the Denver Principles - principles which are still relevant today - reread them!
Equally there appeared to be extremely low attendance from Indonesia; including us, I less than a dozen. A pity, because as I say, the symposium is very practical and relevant in our setting. And the price is right: it cost us well under US$1000 per person all in. One would think that many doctors could afford this amount from their own pockets - without having to take kickbacks from pharma companies.
Among the plenary sessions was a Great Debate: "Should ART be started earlier in an asymptomatic patient?" Prior to the debate, the audience was polled (with electronic voting), and significant majority supported an earlier start. Two speakers then spoke in support of an earlier start (with CD4 count above 250) while two others supported the current guidelines, and members of the audience were also provided an opportunity to add input, Re-polling following the one-hour debate showed the pro-late starter had won my a significant majority. The main argument against an earlier start was the cost, but it was clear that many were also swayed by the argument that, even with guidelines recommending starting ART as soon as the CD4 count drops below 200, the average CD4 count at start is under 100. Thus mandating an earlier start was felt to be irrelevant - and perhaps a distraction.
Bernard Hirschel was one of the speakers supporting an early start. Besides being one of those issuing the famous (or notorious) 'Swiss Statement', he is also a strong supporter of the concept of 'treating our way out of the epidemic' (more on this later). All developed world guidelines now support an earlier start, with CD4 count below 350. We've heard the argument "yes, but the developing world is different" before, and if we'd accepted that in 2003, we'd still be talking about starting antiretroviral therapy in Africa.
I assume the WHO must be working on revised guidelines for resource-limited settings as we speak - the current ones are almost three years old, a lifetime for HIV treatment. It'll be interesting to see how they jump.
Back to the debate: several participants wondered why this format is not more used in international AIDS meetings - there was a debate on the Swiss Statement in The ASHM meeting last year, but this allowed much less audience participation and voting. The electronic voting offered by the Queen Sirikit Centre made this easier, as perhaps did the rather smaller number of attendees than in some other conferences.
We in Spiritia have organised debates in several of our national meetings, with topics including whether universal access to ART free-of-charge is appropriate and whether positive prevention violates human rights. I wonder if there will be a debate at the ICAAP in Bali next August. Perhaps we could debate whether the provision of a special lounge for participants with HIV at AIDS conferences is still appropriate...
Babé
It is of course very medical, and I'd guess the vast majority of participants are doctors or other healthcare professionals. This year, I was accompanied by Caroline from Spiritia and Rika from the Medan-Aceh Partnership, and I'd guess we were among the only members of the 'community' attending. A pity: all such meetings benefit from involvement of the affected community - as was demonstrated very early in the epidemic by the gate-crashers at the first AIDS conference in 1983, which resulted in the Denver Principles - principles which are still relevant today - reread them!
Equally there appeared to be extremely low attendance from Indonesia; including us, I less than a dozen. A pity, because as I say, the symposium is very practical and relevant in our setting. And the price is right: it cost us well under US$1000 per person all in. One would think that many doctors could afford this amount from their own pockets - without having to take kickbacks from pharma companies.
Among the plenary sessions was a Great Debate: "Should ART be started earlier in an asymptomatic patient?" Prior to the debate, the audience was polled (with electronic voting), and significant majority supported an earlier start. Two speakers then spoke in support of an earlier start (with CD4 count above 250) while two others supported the current guidelines, and members of the audience were also provided an opportunity to add input, Re-polling following the one-hour debate showed the pro-late starter had won my a significant majority. The main argument against an earlier start was the cost, but it was clear that many were also swayed by the argument that, even with guidelines recommending starting ART as soon as the CD4 count drops below 200, the average CD4 count at start is under 100. Thus mandating an earlier start was felt to be irrelevant - and perhaps a distraction.
Bernard Hirschel was one of the speakers supporting an early start. Besides being one of those issuing the famous (or notorious) 'Swiss Statement', he is also a strong supporter of the concept of 'treating our way out of the epidemic' (more on this later). All developed world guidelines now support an earlier start, with CD4 count below 350. We've heard the argument "yes, but the developing world is different" before, and if we'd accepted that in 2003, we'd still be talking about starting antiretroviral therapy in Africa.
I assume the WHO must be working on revised guidelines for resource-limited settings as we speak - the current ones are almost three years old, a lifetime for HIV treatment. It'll be interesting to see how they jump.
Back to the debate: several participants wondered why this format is not more used in international AIDS meetings - there was a debate on the Swiss Statement in The ASHM meeting last year, but this allowed much less audience participation and voting. The electronic voting offered by the Queen Sirikit Centre made this easier, as perhaps did the rather smaller number of attendees than in some other conferences.
We in Spiritia have organised debates in several of our national meetings, with topics including whether universal access to ART free-of-charge is appropriate and whether positive prevention violates human rights. I wonder if there will be a debate at the ICAAP in Bali next August. Perhaps we could debate whether the provision of a special lounge for participants with HIV at AIDS conferences is still appropriate...
Babé
Friday 16 January 2009
...appreciation from without
I'm sure we all appreciate being appreciated. As the quote from Douglas MacArthur notes, it is one of the elements of 'The unfailing formula for production of morale." So it's always nice to receive a little kudos.
The following message has just been posted on our anonymous Q&A site, so I don't know who it is from:
Dear Babe,
Thank you!
Thank you for all the time you've dedicated to this website, for your advice and kind words, for your witty answers and I must mention patience!!!!!
My dad was diagnosed in September of 2007 with AIDS (cd4 of 14) Words can't describe how painful the news was for us...and..I can't go there now...
I know he reads your forum religiously every day to the point where he even wanted to switch his medication based on a reply you had posted (I had to step in there, but I say that with a big smile).
I seem to be having difficulties thanking you, there are no words, just know that I am very grateful for all your help.
Keep up the fantastic work Babe and a wonderful New Year to you and your family!!!
Peluk Besar,
C
Thank you, C. As I say, it's great to be appreciated...
Babé
The following message has just been posted on our anonymous Q&A site, so I don't know who it is from:
Dear Babe,
Thank you!
Thank you for all the time you've dedicated to this website, for your advice and kind words, for your witty answers and I must mention patience!!!!!
My dad was diagnosed in September of 2007 with AIDS (cd4 of 14) Words can't describe how painful the news was for us...and..I can't go there now...
I know he reads your forum religiously every day to the point where he even wanted to switch his medication based on a reply you had posted (I had to step in there, but I say that with a big smile).
I seem to be having difficulties thanking you, there are no words, just know that I am very grateful for all your help.
Keep up the fantastic work Babe and a wonderful New Year to you and your family!!!
Peluk Besar,
C
Thank you, C. As I say, it's great to be appreciated...
Babé
Tuesday 13 January 2009
Faith and knowledge ... in the practice of medicine
One of the sentences in Michael's report that the editors highlighted was:
There is no doubt that this is a problem. But a recent report, The Neurontin Legacy — Marketing through Misinformation and Manipulation, in the New England Journal of Medicine (free to those accessing it from Indonesia) shows that, once again this is not a field in which Indonesia leads.
The report makes use of thousands of documents covering a case of illegal marketing in the US by a subsidiary of that giant of Big Pharma, Pfizer. The drug concerned doesn't matter much; the fact is that the company was peddling it for conditions for which it had not been approved, and persuading doctors to up the doses well above the approved level if the treatment appeared to be less than successful. Doctors were recruited, trained and paid to serve as speakers. The company sought "strong Neurontin advocates and users" to promote the drug. They made "unrestricted educational grants" to support Continuing Medical Education. They highjacked research to ensure that reports which did not support their interests were not publicized. And so on.
All very concerning. But worse is that these marketing methods are not illegal; what was illegal was just promoting the drug off-label (to treat conditions for which it was not approved). Apparently there is no law in the US (much less here) which forbids these marketing strategies as long as you are promoting the approved use of a drug.
There have been many reports from around the world of patient groups being highjacked to promote certain drugs. Is that happening with HIV? We'd be stupid if we assumed not. That is one reason why we in Spiritia (and most developing country peer support organizations) refuse to accept money from pharmaceutical companies. On the other hand, many groups in the west rely almost totally on such funding, maintaining that they are 'mature' enough to ensure no conflict of interest. Oh ya?
Back to the doctors here. With such an example from their colleagues in the West, and clearly in much greater need to 'support', who can blame them for jumping on the bandwagon?
Babé
Over-prescribing expensive medicines to uninformed patients is nothing new to observers of Indonesia’s graft-ridden health system
There is no doubt that this is a problem. But a recent report, The Neurontin Legacy — Marketing through Misinformation and Manipulation, in the New England Journal of Medicine (free to those accessing it from Indonesia) shows that, once again this is not a field in which Indonesia leads.
The report makes use of thousands of documents covering a case of illegal marketing in the US by a subsidiary of that giant of Big Pharma, Pfizer. The drug concerned doesn't matter much; the fact is that the company was peddling it for conditions for which it had not been approved, and persuading doctors to up the doses well above the approved level if the treatment appeared to be less than successful. Doctors were recruited, trained and paid to serve as speakers. The company sought "strong Neurontin advocates and users" to promote the drug. They made "unrestricted educational grants" to support Continuing Medical Education. They highjacked research to ensure that reports which did not support their interests were not publicized. And so on.
All very concerning. But worse is that these marketing methods are not illegal; what was illegal was just promoting the drug off-label (to treat conditions for which it was not approved). Apparently there is no law in the US (much less here) which forbids these marketing strategies as long as you are promoting the approved use of a drug.
There have been many reports from around the world of patient groups being highjacked to promote certain drugs. Is that happening with HIV? We'd be stupid if we assumed not. That is one reason why we in Spiritia (and most developing country peer support organizations) refuse to accept money from pharmaceutical companies. On the other hand, many groups in the west rely almost totally on such funding, maintaining that they are 'mature' enough to ensure no conflict of interest. Oh ya?
Back to the doctors here. With such an example from their colleagues in the West, and clearly in much greater need to 'support', who can blame them for jumping on the bandwagon?
Babé
Monday 12 January 2009
Come, let's away to prison
There IS some positive news, even if you have to dig a little for it. I've written before l about the way prisons in Indonesia are responding to HIV. Far from perfect, but at least quite enlightened. This was brought home to me by a report on Voice of America at the end of last year, headed Prisoners With HIV, AIDS in Thailand Now Receive Vital Treatment.
Seeing that headline, I assumed that as usual, Thailand was ahead of us, and that antiretroviral therapy (ART) had become universally accessible in Thai prisons. But it soon became clear that this was far from the truth. In fact, it appears that it applies only to three prisons in the Bangkok area, a result that represents work by MSF since 2003.
Efforts to provide appropriate health services for prisoners with HIV started in Indonesia around the same time. I've seen no reports about progress since then, but from my own experience, prisons from Jayapura in the east to Medan in the west are offering ART to inmates. In several of them, they are in some ways better off than those outside, and I'd personally prefer to be treated in the prison clinic in Bandung's Banceuy prison than in the main (referral) hospital. And besides ART, this prison also provides methadone substitution therapy for those addicts unable to break their habit.
I first visited Banceuy in about 2005. At that time, they were mulling over offering HIV testing to prisoners, but (as had occurred earlier in Bali), they were worried that it might lead to unrest. And they were also concerned over the cost of looking after people they assumed would be sick and need expensive treatment - at that time the health care budget per prisoner per year was Rp 700, maybe enough to buy a couple of aspirins. (I was told in Makassar last year that it had been increased to Rp 5 per inmate per day - sounded a whole load better until I worked it out!) But, we told them, if you can identify people with HIV early, before they fall sick, and put them onto ART that is available free-of-charge, you'll save all those costs, as well as the problems of escorting them to hospital and guarding them there. Don't know how much this influenced their decisions, but as I say, now they offer a model clinic.
Although there is clearly room for improvement, it is clear that in some ways Indonesia is leading the region in its response to HIV in the prisons - and hopefully that is also improving health care more generally for those incarcerated. In some ways it is sad that the country gets so little credit for this - the headlines always seem to go to Thailand, Malaysia or Vietnam. There's not much positive news coming from Indonesia; it's a pity we can't publicise the little there is!
Babé
Seeing that headline, I assumed that as usual, Thailand was ahead of us, and that antiretroviral therapy (ART) had become universally accessible in Thai prisons. But it soon became clear that this was far from the truth. In fact, it appears that it applies only to three prisons in the Bangkok area, a result that represents work by MSF since 2003.
Efforts to provide appropriate health services for prisoners with HIV started in Indonesia around the same time. I've seen no reports about progress since then, but from my own experience, prisons from Jayapura in the east to Medan in the west are offering ART to inmates. In several of them, they are in some ways better off than those outside, and I'd personally prefer to be treated in the prison clinic in Bandung's Banceuy prison than in the main (referral) hospital. And besides ART, this prison also provides methadone substitution therapy for those addicts unable to break their habit.
I first visited Banceuy in about 2005. At that time, they were mulling over offering HIV testing to prisoners, but (as had occurred earlier in Bali), they were worried that it might lead to unrest. And they were also concerned over the cost of looking after people they assumed would be sick and need expensive treatment - at that time the health care budget per prisoner per year was Rp 700, maybe enough to buy a couple of aspirins. (I was told in Makassar last year that it had been increased to Rp 5 per inmate per day - sounded a whole load better until I worked it out!) But, we told them, if you can identify people with HIV early, before they fall sick, and put them onto ART that is available free-of-charge, you'll save all those costs, as well as the problems of escorting them to hospital and guarding them there. Don't know how much this influenced their decisions, but as I say, now they offer a model clinic.
Although there is clearly room for improvement, it is clear that in some ways Indonesia is leading the region in its response to HIV in the prisons - and hopefully that is also improving health care more generally for those incarcerated. In some ways it is sad that the country gets so little credit for this - the headlines always seem to go to Thailand, Malaysia or Vietnam. There's not much positive news coming from Indonesia; it's a pity we can't publicise the little there is!
Babé
Sunday 11 January 2009
The Power of Positive Thinking
Yesterday I met with Michael (author of No Positive News) together with 'Nuraini'. I'd met her on a couple of earlier occasions, first when she was just thinking of starting therapy. And she has been in contact by SMS several times since, usually because of problems of drug supply. She was happy to note that, despite all these problems, her viral load had become undetectable about a month after starting therapy, and had remained that way at subsequent tests. Let's hope it stays that way.
Nuraini had put together some ideas for advertisements based upon her experience, with hope that perhaps they might encourage change in the way that people with HIV are treated (in all the meanings of that word) within the health care system here. She has met up with a fellow from an advertising agency here, who also joined us yesterday. Together they have produced a number of drafts, which she had sent to me a month or so back,
As I have noted earlier, I am not sure of the best approach in attempting to address these problems. Some of Nuraini's drafts are very explicit in referring to corruption in the health care system, and to the acknowledged practice (not only in Indonesia) of doctors receiving 'hand-outs' from pharmaceutical companies. We agreed yesterday that these should be 'put on the back burner' for the moment, and perhaps might be more effective if they did not explicitly refer to the situation in Indonesia; although the problem is well-known here, it is much more widely spread.
But we agreed that a series of drafts, under the general heading of "HIV, It's Not the End", offer a much more positive and probably useful approach, at least in the short term. One has the message "With appropriate care and treatment, your baby will be born uninfected". This is certainly a message we need to get across (perhaps - I don't know - acknowledging that 1-2% of babies born to HIV-positive mothers may still be infected), since even many activists with HIV are not clear about this. In an attempt to address the still not uncommon situation that people with HIV are shunned by their families, and not even allowed to hold their own babies, another has the message "You can still kiss your wife goodbye, kiss your children goodnight, and no need to disinfect."
We'll need to perfect these, and ensure that the message is clear, but they do offer an amazing start. Hopefully you'll be seeing some of them over the next few months.
Babé
Nuraini had put together some ideas for advertisements based upon her experience, with hope that perhaps they might encourage change in the way that people with HIV are treated (in all the meanings of that word) within the health care system here. She has met up with a fellow from an advertising agency here, who also joined us yesterday. Together they have produced a number of drafts, which she had sent to me a month or so back,
As I have noted earlier, I am not sure of the best approach in attempting to address these problems. Some of Nuraini's drafts are very explicit in referring to corruption in the health care system, and to the acknowledged practice (not only in Indonesia) of doctors receiving 'hand-outs' from pharmaceutical companies. We agreed yesterday that these should be 'put on the back burner' for the moment, and perhaps might be more effective if they did not explicitly refer to the situation in Indonesia; although the problem is well-known here, it is much more widely spread.
But we agreed that a series of drafts, under the general heading of "HIV, It's Not the End", offer a much more positive and probably useful approach, at least in the short term. One has the message "With appropriate care and treatment, your baby will be born uninfected". This is certainly a message we need to get across (perhaps - I don't know - acknowledging that 1-2% of babies born to HIV-positive mothers may still be infected), since even many activists with HIV are not clear about this. In an attempt to address the still not uncommon situation that people with HIV are shunned by their families, and not even allowed to hold their own babies, another has the message "You can still kiss your wife goodbye, kiss your children goodnight, and no need to disinfect."
We'll need to perfect these, and ensure that the message is clear, but they do offer an amazing start. Hopefully you'll be seeing some of them over the next few months.
Babé
Friday 9 January 2009
It is not every question that deserves an answer...
...but sometimes I just can't resist! Yesterday, this appeared on the anonymous Q&A forum we run:
Babé
By mistake, I once swallowed a hair while eating fried rice on the street. Perhaps the hair came from the fried rice seller. If we swallow a hair from someone with HIV/AIDS, can we become infected?I fear I had fun with the answer:
Wow, that's dangerous! I think there's no risk you'll be infected with HIV, but even if you are male you could become pregnant by swallowing a hair. You should run to the nearest emergency room, adn ask for surgery to remove the hair.Only hope whoever it is doesn't take it seriously!
Babé
Wednesday 7 January 2009
Sweet food of sweetly uttered knowledge
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
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
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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