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Reflection on The 18th International AIDS Conference

Vienna was my second International AIDS Conference. My first one was Mexico. And as other conference delegates, I had such a high expectation on this conference. I was looking forward to see a great improvement or significant progress on the HIV prevention, care, treatment and support. I believe every conference is unique and has its own characteristics, but one thing that strikes me right from the beginning was the delegate´s badge hanger. It has the branding from Bristol-Myers Squibb. Instead of having something like „XVIII International AIDS Conference 2010 – Vienna“ it has Bristol-Myers Squibb written along the line. I was not sure whether there was not enough time to order the more appropriate one or was it because the company contributed a great deal of money for the conference to happen. Nevertheless, Squibb is not a favourite brand especially because of the scandal in 2003. The company was facing serious allegations such as engaged in a series of anti competitive acts over the past decade to obstruct the entry of low price generic competition for three of Bristol´s widely-used pharmaceutical products which include Didanosine, the second line for paediatric ARV. They also paid a would-be generic rival over US$70 million not to bring any competing products to market as well as avoided competition by abusing federal regulations in order to block generic entry. Bristol produced patented ARV such as Sustiva (efavirenz), Didanosine (paediatric ARV), Zerit (stavudin) and Reyataz (atazanavir) and making the price of these products rising high by blocking the generic products from entering the market. I immediately had the feeling that it would cause a bit of resentment from concerned activists. As a result, I spent the next day looking for badge hanger from any other institutions at the exhibition area and found out that many other activists were doing the same thing.

As a member of Community Programme Committee for this conference, I knew for a fact that there were a lot of gaps in terms of programs for the sessions. It was, of course, positive and negative. The Youth Group for instance, had more visibility in this conference compared to the previous one, so did the Sex Workers Group. The committee had difficulties in placing balance topics due to the focus of the region. The reason why the conference was held in Austria was because this country is considerably the closest one to Russia, Eastern Europe and Central Asia, since it is impossible to hold the conference in any of those areas. This had a great impact in programming because the committee members from Russia, Eastern Europe and Central Asia insisted to have more focus on drug users and sex workers, and almost disregarding other groups such as migrants, MSM and young people. I personally fight for more visibility for migrants because I know for sure that there are a lot of migrant sex workers in Asia who are from Eastern Europe and Central Asia. But then again, migrant´s identity was overshadowed by sex workers´ in this regard. The multiple identity of PLHIV (HIV-positive people who are working overseas, doing sex work, using drugs and a lot of them are young) was often only viewed through one particular identity that was pre-dominantly shown by the person. Thus, I only managed to get one Non-abstract Driven Session on Migration in this conference. Luckily, there were several other satelite sessions on migration held by IOM, ILO and UNDP. Furthermore, I found the statement made by the community speakers at the opening ceremony was a little bit misleading. During the speech, the community speakers mentioned that government must declare HIV as national threat, considering the rapid increase of the epidemic in the region. I did not necessarily agree with this statement, because if the government misinterpret the context, it would be a gateway to reiterate the implementation of HIV-related restrictions and criminalisation of HIV transmission. To be honest, the statement horrified me and other delegates who came from migrants´group. We just hope that no government will misinterpret it.

The location of conference in Europe was also one great obstacle for delegates to attend. I have gone around having chat with various people from Asia and Africa, all of them were telling the same story. Having the conference in Europe is expensive in terms of air ticket, accommodation and daily allowance. Many of the delegates and speakers also failed to obtain the Schengen Visa. I, myself, had a bitter experience when the first time I applied for Schengen Visa to attend the first committee meeting. The Austrian Embassy only gave me 4 days visa. So, I know exactly what these delegates had gone through. It seemed to them the government of Austria was not being supportive or rather having high prejudice towards certain regions.

However, more positive feedback was given for the Global Village. It was said that the Global Village this year was merrier than ever. More things were happening and there were more networking zones which enabled community members to have a lot of sharing and discussions. In fact, a lot more interesting things and discussions happened in the Global Village. All rallies were generated and coordinated at the Global Village. Interesting issues that become the topic of the rallies were the FTA and funding regression. The activists were concerned because some of the funding agencies and governments were giving the hints of backing off from providing resources for HIV programs due to global financial crisis. Other hot issue was the FTA issue in India. The country is currently negotiating an FTA with European Union which putting pressure India to accede to TRIPS-plus provision which are beyond India´s present international obligations under the TRIPS Agreement, will make the ARV unaffordable and adversely affect the right to health of PLHIV. India is the largest supplier of low cost, high quality generic ARV to many developing countries. Over 90% of PLHIV in low and middle income countries depend on India´s generic ARV.

Among many issues that was discussed, one primary topic was the Test and Treat ot TNT. Many activists were hesitant in accepting this methodology. In theory and concept, TNT is good because this methodology will slow down the speed of the epidemic. While the initial investment might be enormous, in the long run it is considered as low investment. Though we all know that treatment provision is a form of prevention, it needs strong support system. The downfall of this methodology is on how to ensure the human rights protection for the patients. In some developing countries, the current situation of treatment provision has already been problematic and unsustainable. The fear of the upcoming huge wave of people going for treatment as the result of TNT is unbearable. If the current situation is unsustainable, how do we ensure treatment is available for everyone post TNT? Another issue is the quality of counseling given in TNT because this will have a great impact on the newly-diagnosed people. Surely, the last thing we want is to have a large number PLHIV suffered from psychological problems. In order to implement TNT, government needs to be ready with sustainable and accessible treatment combined with social support mechanisms such as job security, housing and education. Thus, many activists doubted that TNT is going to be effectively implemented.

There was a lot of suggestions to bring the conference back to Africa or Asia, where the epidemic is still considerably high. But, as we all know, the next one will be in Washington DC, USA. As far as I know, USA had expressed its interest to host the next IAC and this momentum was used to push for the abolisihing of the HIV-related Restriction in that country. It is good because now USA does not impose the restriction anymore, but what we have to remember is that even though now PLHIV do not have the restrictions to enter the country anymore, people who have criminal records, drug users and sex workers are still imposed by the restrictions. This issues had been expressed by Dennis Glodevsky from ITPC Russia and reiterated by Rachel Ong, the Chair of GNP+ in her speech at the closing ceremony. A lot of people were worried regarding the venue for the next IAC and hope that the Obama Administration will do something about the restrictions.

Quite a lot of people also have different impression on the conference. While they acknowledged the importance of having the conference as an arena to share, building capacity and discuss the issues, it came across like a waste of resources. For some people, it is best to put the resources on programs and prevention in the locality and have the conference once every four years instead of biannually. Many people, including myself, expected concrete results and follow ups after the conference. I personally feel that every conference needs to have accountability mechanisms so it would not turn into some avenue to spend money. While I agree that people need to meet, share, network and discuss – I think what most important is how the delegates could bring what they got in the conference to their community and implement it. Or how to turn the conference from a talkfest to real activities with clear objectives and feasible results.

It is year 2010 already and the International AIDS Conference had already been held for 18 times. This year, we are meant to conclude the Universal Access. To quote Rachel, the distance that we had to go through from Global Village to the PLHIV Lounge is a good analogy for reaching Universal Access 2010. It is too far and we have a long way to go. Hopefully this conference will somehow speed up the process of reaching the goal of Universal Access 2010 and Millenium Development´s Goals 2015. Despite of some disappointments that I felt for this conference, I still have hope that in the future IAC will be able to bring in significant results for global AIDS response.

Activists's Call Donors to Keep Their Promises

On the July 18th, 2010 the XVII International AIDS Conference was officially opened. The most interesting part of the opening was that it was made lively by the protest by the HIV/AIDS activists around the world. They were holding up the signs that says „BROKEN PROMISES KILL“ and „NO RETREAT! FUND AIDS NOW“. The aim of the protest was to call upon the government of G8 countries to keep the funding for HIV flowing. The financial crisis that strikes the world recently had put many organisations in limbo as many funding agencies are starting to withdraw or reduce their support on HIV prevention programs.

„This HIV issue had been around for more than two decades now, it is not a sexy issue anymore. But this is not about popularity or trend. This is people´s life we are talking about. Cutting off or reduce the funding on HIV means cutting off people´s lives!“ said Frika, a well-known HIV activist from Indonesia. „It is also not logical to reduce the funding when we are actually making some improvements. The vaccine is now in the process of further and more intensive research and the growing of the epidemic is considerably slower. Why reducing the financial support when we are nearly there already?“ she continued. Frika joined the protest with over a hundred of other activists who intervened the opening ceremony and surely was successfully passing the message acrossed.

Viewing HIV/AIDS as a sexy or trendy issue had put the whole cause in jeopardy because at some point the trend will be shifted to something else. And the fact is, we cannot shift our attention and efforts from HIV/AIDS. We all know that the existing statistics reflects only the tip of the iceberg, therefore, a lot should be done still. It is simply out of the question to retreat.

Indonesia and HIV - Where Are We Now?

As we all know, the recent global economic crisis has had deep impact in every part of the world. As a result, institutions working in all manner of social issues have been dealing with a decrease in funding levels and in other cases, funding has been cut off altogether. Non-governmental organisations (NGOs) and community based organisations (CBOs) have been devastated because many of their programs have had to be terminated.

This state of affairs is especially applicable in developing countries where many governments have been unable to provide the financial support needed to tackle issues such as HIV and as a result rely predominatly on foreign donor organisation and/or international institutions to provide the majority of investment needed.

Since 2009, the Indonesian government has spent Rp. 180 billion [approximately USD1,700,000] on HIV prevention which is a tiny sum in relation to the financial package to establish adequate prevention, treatment, care and support programs within the country.

Despite this and the fact that HIV infection rates continue to rise within the country, the Minister of Communication and Information has recently issued statement stating that the amount should be reduced so the money can be utilised in other areas that is more ‘beneficial’ to the country. Neither the National AIDS Commission of Indonesia nor the Ministry of Health has commented on this statement which flies directly in the face of existing pledges to Universal Access or the wider Millennium Development Goals (MDGs). That is why Indonesia is relying a lot on international and foreign funding aides and why the financial crisis has been so detrimental to tackling this issue.

A further arising issue within the country is the need to increase the self-empowerment of PLHIV communities which remains dreadfully low. While there have been a few organisations who have sought to tackle this issue through vocational and income generating programs, such programs remain unsustainable because of no significant support from the government to sustain these programs on any considerable timeframe.

Economic empowerment is also essential for the PLHIV communities, who have often failed to secure decent livelihoods because after the empowerment programs, no capital was given to start the business or for those who have the capital, no buyers to come and place orders. Such a severe problem also directly increases the poverty levels of PLHIV in Indonesia. Many of who live below the poverty line and struggle to feed themselves and the family on a daily basis.

This issue must be seen as directly related to the issue of access to treatment and medication because even though ARV is provided for free, the travel expenses for people to go to and from the hospitals is sometimes considerably huge in relation to their overall income. As a result of this situation, many PLHIV are forced to choose between feeding their families and travelling to the hospital to get ARV, they obviously chose to feed the family.

To make matters worse, Indonesia has been continuously struck by natural disasters such as earth quakes and typhoons which further complicates efforts to tackle HIV. Not only does this often render the health care services inaccessible, it also affects the livelihood of PLHIV in the locality affected. On September 30^th 2009, West Sumatra was struck by an earthquake and many of the health care facilities have not been repaired since. In one of the villages affected, over 30 PLHIV families are living below the poverty line. Many suffer from malnutrition as a direct result of damage to their livelihoods which impacts on the levels of food security and renders the family unable to afford trips to hospital further afield.

Talking about human rights protection in Indonesia long endless story, especially for women and girls living with HIV. Mandatory HIV testing and sterilisation sadly remains a frequent practise where many HIV-positive women are forced to be sterilised to prevent further pregnancies. The pressure arising from stigmatisation towards HIV-positive women now means that many are forced to feel guilty for their desire to have children. Yet all women bare the right to become a mother but the information on sexual and reproductive health for HIV-positive women and girls remains limited. Being sexually active and HIV-positive at the same time is very difficult. Women and girls living with HIV are often severely restricted in their options for sexuality.

The need to recognise the importance of Sexual and Reproductive Health Rights for women and girls remains crucial in Indonesia. The responsibility of preventing HIV transmission is not solely the women’s’ responsibility and men need to actively engaged in this process and to provide support for women by treating them as equal partners. People need to understand and realise that men and women need to support one another at all levels both in Indonesia and worldwide.

PLHIV need integrated, comprehensive and friendly health services that enables them to encompass the rights of sexual enjoyments without being discriminated and stigmatised as the response to their strategic gender needs. It is essential to always link HIV with sexual and reproductive health issues. It is also essential to address the issues related to growing up and being sexually active for girls and boys; and ageing with HIV for adult women and men as well as to link HIV complications regarding treatment with other female and male specific illnesses such as cervical cancer and prostate cancer.

Activists Call Against FTA

The exhibition hall of the XVII International AIDS Conference looked normal. People were walking around, asking questions, discussing, taking pictures. Everything was just as busy as any other day. But that normality was not going to stay for very long time, because some activists were gathering outside the hall. Each and everyone of them were holding a sign board. I could sense something was going to happen.

Just as they were convinced that everyone was in the line, they started marching inside the exhibition hall, holding up all the signs and approaching the booths of pharmaceutical companies shouting „Pharmacy kills! Pharmacy kills!“. Apparently they demanded the developed countries to drop the Free Trade Agreement (FTA) that is known as the cause of overblown price of medicines. The action was also based on the recent even in India. The government of India is currently negotiating FTA with European Union (EU). And to make matters worse, the EU is pressuring India to accede to TRIPS-plus provisions. And for this, they stopped in front of EU government's booth and shout, "Shame! Shame! Shame!"

The activists believe that this TRIPS-plus provisions are beyond India´s present international obligations under TRIPS Agreement. TRIPS-plus will make medicines unaffordable and adversely affect the right to health as well as accessibility to medications. Another concern from activists around the world is also because India is the largest supplier of the low-cost, high quality generic medicines to other developing countries in the world. Over 90% of people living with HIV (PLHIV) in low and middle income countries rely on the generic antiretrovirals produced by India. FTA will have a great negative impact because it will halt the domestic production of low cost and high quality generic medicines resulting the exorbitant rise in prices. Therefore, it will be the end of the affordable medicines´history. The Lawyers Collective HIV/AIDS Unit India carry out a worldwide advocacy to sensitise the government of India and try to influence the decision making process, hoping the negotiation will not result on TRIPS-plus. They demand for no TRIPS-plus provisions in FTA and no restrictions on TRIPS. Apart from that, they also demand public consultation and transparency in the negotiation process.

  

Voices from Global Village

Khartini Slamah, or Tini was sitting in the Sex Worker Networking Zone when some people approached her for some informations. She patiently entertained all the questions before she turned to me. Tini is the Board Member of NSWP and this is her second International AIDS Conference. Her first was Toronto and then she missed Mexico. Tini had been actively involve in the sex workers´movement and HIV for more than 2 decades now. „I see the Global Village is more happening now and have more networking zone. I´m happy that the sex workers are now have more visibility, more recognised and their involvement is more significant.“ she told me excitedly. She has always been feeling more comfortable in the Global Village because it is the place where everyone comes to share and strengthen the network. However, it is also important for her that the sex workers will have more meaningful involvement in the conference, i.e more sessions on sex workers.

She regrets that non-delegate visitors are only allowed to come on certain days. „We actually need more people from outside the community. People who do not have enough understanding regarding our movement so we can do more advocacy and education to them. I hope this will change in the future, because that is one of the most effective way to do advocacy. People need to see how well-organised and how smart we are. This is also to reduce prejudice and stigma against sex workers.“

Like many other delegates, Tini expects concrete outcomes from the conference, „This conference is important. I do expect the number of participants will be increased in the future and we will start to see more and more new faces around here. I hope this arena will be good for the community to lobby donors as we know the funding crisis is everywhere. I expect we can find more funding support for our organisation through this conference because as you can see, there are a lot of donor agencies are sending their representatives to attend this conference. Apart from that, I want to see more community representations sit as speakers in the plenary sessions.“

Different to Tini, for Ajay Kumar Uprety, Vienna is his first International AIDS Conference. Ajay is the South Asia Regional Focal Point for GYCA. He was also attending the Youth Pre-Conference on 14^th to 16^th of July. His goals are to network with other organisations that has similar niche, advocating for youth and for the inclusion of more Harm Reduction topics. Coming from the community that has strong drug user background, Ajay found that the discussion on drug use was mainly covering only Europe, „I know that the conference is held in European country, but I guess there´s nothing wrong with having Asian point of view to enrich the discussion.“ His first impression about the overall of the conference was „It´s very scientific. And it is not easy for many community members to understand the language that was used by the scientists in their presentation.“

Ajay expects to bring back some new informations and best practices from the conference to his community in Nepal, „I´m quite happy to see that youth has good visibility in this conference. I think it´s important for people to be aware of the existence of youth.“

TNT = Test aNd Treat

One of the burning issues that received a lot of pros and cons from the community is the Test and Treat Project, or more popular known as TNT. The scientist believes that this new prevention method, that was based on a mathematical model, will eradicate HIV if applied in a large scale. Researchers are planning to set the trial in two years and it will be involving around 40,000 people as participants in South Africa. Half of the research participants will get immediate treatment when they are tested positive, while the other half will have to wait until their immune system deteriorate at certain level before being put on a treatment scheme. The experiment is designed to see whether starting early treatment will reduce or eliminate the transmission or not. This methodology is assumed to be able to reduce the infection rate up to 95%.

United States of America is planning to carry out the TNT Project in Bronx, Washington DC and Manhattan, as those areas are seen as having highest rate of HIV infection in the country. In Washington, D.C., where about 5% of adults are estimated to be HIV positive--and up to one-fifth of those may not knew their HIV status--only around half of those who were diagnosed in 2006 pursued medical follow-up within six months’ time. That delay can mean the difference between years of healthy living with the proper combination of medications, or poorer health and an earlier death. It also creates a larger window of opportunity for the virus to passed on to others.

However, the plan was not applauded fully by the community. Many of them are still hesitant and even strongly believe it is not the best way to solve the epidemic issue. „I do not agree with this project because this is merely just another form of mandatory testing. And there is no opt out while treatment provision is not sustainable.“ Meena Seshu from India strongly addressed her opinion. She said that there is no adequate support mechanism in her country and treatment is not accessible.

On the contrary, Greg Gray, the Drug User and MSM Campaign Coordinator from World AIDS Campaign thought that the idea is great, but there are many other factors that needs to be considered. „How do we ensure that the human rights of the patients are going to be protected? That is the big question which going to be addressed by a lot of people, because we know that confidentiality and proper counseling are still the challenges around testing.“ Greg thought, conceptually and theoretically it is a great and logical method that fits economically. Because while the initial investment is huge, for the long run it will be considerably a lot cheaper than other prevention methods offered so far, so the investment will be worth it. Everyone knows that treatment provision is a form of prevention, but it needs to be endorsed by other forms of support as well. We need to consider the mental preparedness of the people. Social supports such as job security, housing, sustainable income, proper psycho-social counseling and access to treatment are very important to be in place.

„Accepting HIV status is not an easy thing to do. if people do not have psycho-social support, it will have negative impact on the society. And we do not want to see more HIV-positive people getting into depression.“ said Greg.

Mei from Indonesia explained that her country is not ready for this project. Furthermore, a lot of discussions had been conducted in the national mailing list and most of the feedback was negative. Many activists in Indonesia seen it as a repackaging of mandatory testing or a way to make mandatory testing politically correct. Another concern from her was treatment provision and adherence in Indonesia. „If this project is carried out, I am afraid there is going to be a huge wave of people going for treatment coming. In the mean time, treatment provision in Indonesia is very unsustainable. We are struggling because the supply of medication is uncertain.“ Furthermore, she explained, the adherence level in Indonesia is considerably low. If this project is carried out and the quality of adherence is not good, the number of people who get drug resistance will increase rapidly and second line ARV will have to be provided. Indonesia is still fighting for certainty of the first line, let alone the provision of the second line. „While we can see that theoretically this is a good methodology, practically, it is difficult. The government will be hesitant to invest and the possibility of drug resistance will be a big problem for our country.“

Every aspects in our lives has to sides. The good side and the bad side. There are still a lot of aspects to consider before we step into the project. Human rights is one of them. The loss of opt out in this project will be seen as human rights violations which will create another pressure from the community. And it is important to remember that what is presumably applicable in one region may not be ideal in others. So, more flexible and sensitive approaches are essential.