Care, Support & Treatment for PLHIV in Indonesia

By: Chris W. Green

Background

Since the launch of the ‘3 by 5’ initiative by the WHO in 2003, there has been a significant scaling up of Care, Support & Treatment (CST) for PLHIV in Indonesia. Prior to this, antiretroviral therapy (ART) had been available on a very limited basis, through only a handful of hospitals, and at considerable expense. Many people were only able to afford therapy with two antiretroviral (ARV) drugs, initially d4T plus ddI, but later with AZT plus 3TC. Nevirapine became available in the early 2000’s, and triple therapy with AZT, 3TC and nevirapine (often in a fixed dose combination from Aurobindo in India) became more widely available, although at a considerable cost – around US$125 per month, clearly out of reach for most.

CST Policy

In early 2004, a number of meetings to discuss the ‘3 by 5’ initiative resulted in development of a CST policy by the Indonesian Department of Health (Depkes). This policy included the decision to start local production of generic ARVs by a government-owned pharmaceutical company, Kimia Farma (KF), to be provided on a subsidized basis to PLHIV who met the WHO criteria for starting ART. KF started to produce a fixed-dose combination (FDC) of AZT + 3TC, which they named Duviral, with nevirapine offered separately, with the name Neviral.

To achieve the ‘3 by 5’ objective of providing ART to 50% of those needing it by 2005, it was estimated that this would mean treating 10,000 PLHIV in Indonesia at that date. A budget for this was determined, based upon a 50% subsidy. With KF setting the price at Rp 380,000 per month for their three-drug combination, this would require PLHIV in Indonesia to pay more than US$20 per month – well beyond the pocket of most. Following a vigorous advocacy campaign, Depkes agreed to a full subsidy (they prefer not to refer to “free”), but this would require halving the total treated to 5000. This was accepted, given that the slow scale up of counselling and testing was unlikely to identify even that many cases.

Because of intellectual property rights (IPR) concerns, the government had to officially designate KF as the producer, with the proviso that the ARVs had to be sold to and delivered by the government. It was therefore determined that ART would be provided by a number of referral hospitals. Initially 25 referral hospitals were designated to offer ART and other CST services. Each referral hospital was required to nominate two doctors, a nurse, a counsellor and a case manager for training to be carried out by Depkes with WHO support. Each referral hospital was required to form an AIDS working group (Pokja AIDS), involving doctors from all of the needed specializations, including pediatric, neurology, pharmacy, dental etc.

Referral hospitals

The Depkes plan provided for a rapid scale up in the number of referral hospitals, initially so that there would be at least one in each province, and later to one in all of the almost 500 districts, From the initial 25 referral hospitals in 2004, 153 had been designated and trained by 2006, and it was planned that this should increase to 237 in 2007, 400 in 2008 and 500 in 2009. Sadly, while there has been an increase in the number designated and trained since 2006, Depkes reports indicate that only 150 were providing ART services at the end of 2008.

It was also planned that the range of services offered by the referral hospitals should be extended, covering not only clinical services, but also laboratory, including provision of CD4 and viral load tests, and also enhancing diagnostic capability. However, this has also been very slow.

The policy also allows for designation of satellite clinics, supported by referral hospitals. Unfortunately the policy does not yet define how these should be set up, monitored, trained and supported. Nevertheless, a significant number of community health centres (puskesmas) and TB clinics around the country have been designated as satellites. Most are not (in theory) allowed to start PLHIV on ART, but can take over the provision after the first few months. There are no details of how many such satellites are in operation, or how many PLHIV they are supporting. It should be noted that some at least are doing an excellent job of providing integrated services. For example, Puskesmas Kasi-Kasi in Makassar is providing ART, TB therapy, methadone substitution, and a drop-in centre for PLHIV with support from its own peer support group.

With the exploding number of incarcerated drug users, an increasing number of whom are living with HIV, several prison clinics have also been designated as satellites. Again some are doing an excellent job; the clinic in the Banceuy prison in Bandung is one, again providing a wide range of services including ART and methadone. Often the care provided in such satellites is better than that at the huge institutional referral hospitals.

ARV provision

In accordance with WHO guidelines, the following drugs are provided free-of-charge through the referral hospitals:

• Preferred first line: AZT/zidovudine + 3TC/lamivudine (usually FDC, 300mg AZT + 150mg 3TC) + nevirapine, usually locally produced; AZT available alone in 100mg capsule, 3TC available alone in 150mg tablet
• Alternatives for first line: d4T/stavudine (30mg, usually locally produced), efavirenz (600mg, imported)
• Second line: tenofovir (imported) + 3TC (local) + Aluvia/lopinavir/r
• Alternative for second line: ddI/didanosine (buffered, imported)

No other ARVs are available through the government system. A few originator ARVs are sometimes available in pharmacies, primarily Retrovir (AZT) and Epivir (3TC). Some PLHIV obtain other drugs from overseas (Thailand, US) through a variety of means. There is a system to allow import of non-approved drugs for personal use through a doctor.

Note: while drugs are provided without charge, there is usually a hospital registration charge (usually US$1 or less) and a consultation charge (often a bit more). These charges should be reduced or waived for indigent patients with the right paperwork.

The policy is that first line drugs should be provided through the national budget, while second line drugs will be paid for by the Global Fund (GFATM), although some first line drugs have been supplied through GFATM. Since KF is not WHO pre-qualified, drugs paid for by GFATM must be imported from an approved source. This results in two different procurement systems.

Supply chain management is weak at all levels, from forecasting and procurement to reporting by hospitals. One result is frequent stock shortages, which cause stress among PLHIV; although there are few reports of people having to stop therapy, many can only obtain sufficient for a few days at each visit, and must return, sometimes every three days, to obtain more.

Depkes release an occasional report on numbers of PLHIV in treatment, on ART, drop-out, etc. The latest report may be accessed here.

Guidelines

Depkes has published a number of guidelines on CST. Most are not available on the web, and are also out of print. The first, ‘Tatalaksana Klinis Infeksi-HIV di Saran Pelayanan Kesehatan (Clinical Management of HIV Infection in Health Care Facilities)’ was published in 2001. This was followed by ‘Pedoman Nasional Perawatan, Dukungan dan Pengobatan bagi Odha (National Guidelines for Care, Support and Treatment of PLHIV)’ in 2003. In 2004, Depkes published ‘Pedoman Nasional Terapi Antiretroviral (National ART Guidelines)’ based on the 2003 Revised WHO Guidelines. This was revised in 2008, to reflect the 2006 WHO Guidelines; however the revision is only available as an electronic document, and has yet to be printed.

In addition, the Indonesia Pediatricians Association together with Depkes published ‘Pedoman Tatalaksana dan Terapi Antiretroviral pada Anak di Indonesia (Guidelines for Management of HIV Infection dan ART for Children in Indonesia)’ in 2008.

Tests

CD4 testing is becoming more widely available, but primarily through private sector laboratories, which send samples to a central referral hospital. Although in theory a CD4 test is provided free-of-charge, this is rarely possible, and the test usually costs around US$10 or more. Quality assurance is questionable.

Viral load testing is available at a handful of hospitals. Charges vary (some provide a limited number free), but often the cost is around US$75 or more. There is currently no use of dried blood spots.

Resistance testing is not offered. It was reported that a central lab had been set up to carry out resistance surveillance, but there has been no recent news of this.

Therapeutic drug monitoring is not offered.

Microbiology testing for diagnosis of opportunistic infections is very limited.

TB culture and drug susceptibility testing is rare.

Opportunistic infections

Treatment for opportunistic infections often depends on early diagnosis. Because HIV is often not suspected, the diagnosis of the opportunistic condition is delayed, sometimes with fatal results. Given that perhaps as many as 20,000 mostly young people die of undiagnosed AIDS every year in Indonesia, clearly there is room for improvement. Doctors are not yet asking the question: ‘Could it be HIV?’

Most simple opportunistic infections, such as PCP and toxo can be treated and cured. In addition, cotrimoxazole prophylaxis is now almost universally offered after diagnosis, at least to adults. But the more advanced opportunistic infections are more difficult to manage; CMV retinitis is relatively common, but gancyclovir is generally not available or affordable, let alone implants. Other advanced infections, such MAC, are rarely considered.

TB is an increasing challenge. Many PLHIV present with smear negative TB, and chest X-rays are rarely definitive. Extra-pulmonary TB is common. Pulmonologists rarely understand HIV-TB co-infection, and often use non-standard diagnostic methods and treatment regimens, sometimes also unaware of the risk of interactions between TB treatment and ART. Accelerated treatment of suspected TB among PLHIV is rare. The result is that TB treatment fails, and by the time correct action is initiated, the patient is in terminal state and often dies soon after ART is started. This has contributed to fear among many PLHIV that ART is deadly.

There is also little appreciation of the risk and management of immune reconstitution inflammatory syndrome (IRIS). There have been several cases of CMV retinitis leading to blindness after starting ART as a result of IRIS. There has also been one report of Hansen’s disease occurring from IRIS.

Co-infections

Apart from TB (discussed above), viral hepatitis presents what may be the biggest long term challenge. A large proportion of PLHIV in Indonesia were infected through injecting drug use, and most are diagnosed as infected with hepatitis C virus. Since few are able to confirm this diagnosis with a viral load test, the actual infection rate is not clear, but probably many are indeed chronically infected, since they have had multiple exposures. Indeed, evidence from liver function tests seems to confirm this.

For some unfathomable reason, although most HIV-infected injecting drug users (IDU) are tested for HCV infection, it seems that few are tested for hepatitis B. We therefore have no clear picture of the extent of HBV infection, but it is probable that doctors are prescribing ART without concern for its effects on possible HBV infection. It seems probable that many of the elevated liver enzymes could result from this, or indeed from HBV IRIS.

Most PLHIV in Indonesia, or at least those aware of their status, have a relatively clear picture of their HIV and its treatment. However, for most, their hepatitis co-infection is a ‘black hole’, about which they know little and understand less. What most know is that current treatment for hepatitis C is unaffordable, although they are probably unaware of its low success rate or its cruel side effects. If the cost of treatment is like buying a car, even doing all the tests (viral load, genotype, biopsy) costs the same as a motorcycle, and is thus another unknown.

Since the effects of hepatitis infection usually take more than ten years to appear, and since most will have been infected in the early 2000’s, we have yet to feel the impact. But almost certainly we will start to lose our gains from ART in the next decade, as PLHIV start to die from non-AIDS related causes – also including heart and lung problems as a result of unhealthy life styles, particularly smoking.

Other services

In theory, all referral hospitals can offer all the services needed to support patients with HIV. In practice, referral hospitals may often have no beds available.

Some have set up separate AIDS wards or clinics (e.g. Tropical Diseases Institute in the Soetomo Hospital in Surabaya, East Java), but most have integrated in-patient services in wards appropriate to the disease. Most have a ‘VCT-clinic’, which is the normal centre for out-patient services for PLHIV, including (usually) monthly prescription refills.

Testing is primarily passive, effectively provider initiated, when doctors (finally) suspect that a sick patient might perhaps be HIV-infected and refer him or her to the VCT clinic. VCT clinics are rarely well-promoted, user-friendly (rarely free-of-charge) or attractive.

In theory, all hospitals should be capable of providing normal in-patient services except ART to PLHIV. However, many still maintain that they are ‘not ready’, and immediately refer patients found to be HIV-positive to referral hospitals. Discrimination, while reducing, still exists among some health care workers, including (sadly) some doctors trained in CST.

Conclusion

Despite these shortcomings, there is no doubt that there has been a major improvement in the situation since attention started to be given more widely to CST for PLHIV in 2004. While previously, people diagnosed with HIV infection rarely survived more than a few years, and there was a continual turn-over in peer support activities, now people are staying healthy and living a full life. The challenge is to maintain that progress and reach out to the 95% of PLHIV in Indonesia who do not know that they are infected.

Please note that this article reflects the view of the writer, and not necessarily those of the Spiritia Foundation.

Last update: 21 February 2009