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
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