Indonesia: facing life with HIV

The 20th International AIDS Conference opens in Melbourne this weekend, and I am going to be there as a member of the community delegation from a 'middle income country', Indonesia. I want to hear about the experiences from other countries of the ' responses to AIDS, especially about anti-retroviral (ARV) HIV medication and how the strategic use of ARVs is implemented. I also hope that I can contribute to the voices of people living with HIV, so that together we can build a better strategy for effective AIDS responses.

On December 2013, Indonesia implemented the Strategic Use of ARVs (SUFA) in 13 districts. Its goal is to achieve “Zero New Related Deaths, Zero New Transmission and Zero Discrimination”. The idea is that all people with HIV in Indonesia should know their status and receive quality HIV medication, irrespective of their CD4 count (the blood cell count used), so their viral load - which measures the success of the ARVs in suppressing onward infectivity - will become undetectable.

The three strategies to implement SUFA are scaling up quality testing, early quality treatment, and monitoring of quality of treatment. My organization, Indonesia AIDS Coalition, is one of a few organizations in Indonesia which overseea the implementation of policy, and whilst it may sound like a good and bold strategy in principle, it does have ethical and implementational problems. I can explain why in relation to my own experiences.

I learnt that I had HIV in 2004, a year after I had experienced sexual violence. In 2004, information about HIV and AIDS was still very limited. When the doctor told me, he didn’t say anything about what I should do, what medicine I could take, or give me any information about it. He just told me “yes, you are HIV positive”. I didn’t know what to do, I felt like my world had disappeared, so I tried to forget this information and continued my life like others. I was in denial, so I worked full time, often late, sometimes forgetting to eat. In October 2009, I collapsed and was hospitalized for many months without knowing why. I never thought it was because of my HIV until one day, in February 2010, a doctor suggested I take an HIV test. With a brave heart, I was tested, hoping that the result would be negative. However everything that had happened to me in the past came into my head again. Two weeks after the test, I received the result. It stated, once more, that I do have HIV.

The doctor referred me to another doctor, saying that I had to move to another hospital because this hospital could not accept people with HIV. That was my first rejection from healthcare providers. I felt that life was going to be hard from that day on. Luckily, I then met a kind doctor who supported me. In the next hospital, all the nurses gave me the support to face the days ahead.

But still I couldn’t face my mother, my family or my friends. It was very hard for me.

While I was hospitalized, I kept thinking “If I had got enough information earlier, if I had known that there was HIV medicine to take, I would never have become this sick.” Once discharged, I quit my job because I felt there was no place there for me anymore. I felt very insecure about meeting people. Instead, I found out more about HIV and started working with a local ngo in Indonesia.

Anti-retrovirals in Indonesia have been free for people with HIV since 2004, but I didn't start taking ARVs and other related medication until 2010, when my CD4 count was only 14. In the UK, HIV medication is recommended below CD4 350. After three months, even though I took all the medication, I got Steven Johnson syndrome because of one of the medicines, so had to be hospitalized again. For a few months I had managed alright, but then after my treatment for Steven Johnson, I became severely anaemic, because of one of my other HIV medications. Again I needed to be admitted. My doctor decided to change my medication. However three months later, I developed peripheral neuropathy, a side effect of the new medication, which causes tingling and numbness in hands and feet. I was referred to a new doctor, this time for  “2nd line” medication, used when the “1st line” options fail. But that doctor said that I couldn’t change to 2nd line therapy, because it was very expensive and limited.  She said I had to continue as before, even though the medication I was taking is only recommended for six months at most, and I couldn’t cope with the side effects.

After six months of misery, I decided to stop the medication because it was torturing my body, even though I knew all the risks of stopping. Five months later, in February 2013, I collapsed and had to be admitted again, I almost gave up.  I told this doctor that I had HIV and he asked me what medicine I took. My CD 4 count had fallen from 157 to 48. I was sick for almost two months and had to stay bedridden. However by now a new medication (tenofovir) had been accepted as a 1st line therapy in Indonesia. So I started ARVs again in April 2013, with this included. For two weeks I felt dizzy, lost appetite, and had nausea, but then slowly improved. My CD4 count increased to 151 by July 2013, and in December 2013 my viral load became undetectable. 

I have heard many similar medication stories from others living with HIV in Indonesia. I don’t want other people living with HIV to have the same experiences as I have had. I wish that more doctors knew and understood what patients have been through with all the medication. I wish that we could have many choices of affordable ARV medicines in Indonesia, instead of excuses that we cannot have better treatment because the medicines are expensive. And it is better to know your status sooner rather than later. 

So how does this experience relate to the SUFA programme ? First, by implementing SUFA, the number of people with HIV taking ARVs was intended to increase, but the national budget to buy ARVs has been cut. Next, not all people with HIV, health providers, or even doctors, understand how to take medication. Recently, someone with HIV died because he drank the Silica Gel preservatives in the bottle because the doctor instructed him to drink all the medicine. Thirdly, lack of information about SUFA amongst doctors also causes problems because many people with HIV are ready to take the medicine, but doctors still adhere to the older guidance that people should start to take ARVs if their CD4 count is under 350. This despite SUFA now states that all people with HIV should take ARVs, irrespective of our CD4 count.  Fourthly, the viral load test is still very expensive and not available in all hospitals, making it very hard to assess the success of the medication.

Pregnant women are a captive audience, since it has become compulsory for all pregnant women to be tested for HIV before receiving any ante-natal care. This violates their human rights. Moreover, coerced sterilisations and intimate partner violence have been reported. There are also plans to introduce Option B+ in Indonesia, as a part of SUFA, which will mean that all pregnant women, once diagnosed with HIV, will be expected to take ARVs for life - whether they actually need them for themselves yet or not.

For women and men alike, adherence counseling is still not working very well. It is hard to commit to taking any medication for life, and HIV is no exception. Current information collected by my organization, Indonesia AIDS Coalition, through focus group discussions, is finding that many people stop taking ARVs after many years because they are tired of taking them. Over the past few months, more than 10 people we know have died as a consequence. We have also found there are some groups who deny the existence of HIV and AIDS altogether, and refuse to take any ARVs. Community engagement in SUFA is only cosmetic, in that community activists are invited as token participants to government meetings about programmes that have already been determined without prior consultation. 

SUFA is theoretically a good idea, but if it is only a top-down, with government ambition without rigorous monitoring and evaluation of viral load, or any real understanding of the complex quality of life issues, including side effects, the big goal will not be achieved. Moreover, stigma and discrimination against people with HIV remain high.

It is not morally justifiable to diagnose people with HIV and expose them to this environment  without any access to care, support or treatment. Even medication alone is not enough without creating a system and environment which can support us to take it, and monitor its effects on our health. Engagement of people with HIV in the whole process, not only as beneficiaries but also as central stakeholders, is critical.

I don’t want anyone else to experience what I did.

Strategies, no matter how well intentioned, are not enough without the knowledge, insights and experiences of people with HIV to translate them into effective and rights-based practice. I have a big hope that after this International AIDS Conference there will be better treatment and a better quality of life for people living with HIV, especially in the context of the post-2015 agenda. Finding and implementing the right response to AIDS is still a huge issue.

This article is part of 50.50's long running series on AIDS Gender and Human Rights exploring the ways in which global policies ignore the gender dimensions of the pandemic, and the impact this has on women's human rights. We are publishing daily during the 2014 World AIDS Conference in Melbourne July 20-25.