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.

Community Voices

Global Village had always been the best place to network for the community members. Especially this year´s Global Village has more Networking Zone that are located all over the venue. I went around and meet a lot of fellow community members and from them, I tried to get some information regarding their insight on the conference.

Liping is the Youth Campaign Coordinator of World AIDS Campaign and this is her fourth conference so far. She has a cheerful personality and came across very friendly and excited. „I am happy because this year, the youth representation is a lot stronger. We have more voice now and even better, one of youth representative from Indonesia was selected to be the speaker at the Opening Ceremony.“ she said. The youth group is considerable one of the strongest at the moment. They had their own pre-conference activities and managed to bring along 350 young people from all over the world. Held in the Vienna Medical University, the Youth Pre-conference covered issues around treatment, sexuality, human rights and advocacy. This year looks like the discussion among young people also had moving further to marginalised group such as MSM, transgender and sex workers. Around 20% of the scholarship from the organiser had been allocated specifically for young people to ensure their meaningful involvement and visibility at the conference.

However, as a person who had been to many conferences, Liping found that due to many occuring conferences, people are getting what she called ´conference fatigue´. „I see a lot of activists now a little bit hesitant to do frontal advocacy because of many factors. People I have talked to mentioned that the fear of losing their job is one of the main factors. Liping herself prefers to do the advocacy in a more diplomatic way. She mentioned that during the session that discussed the accountability, Global Fund had made a committment to continue supporting youth groups, so had the Deputy of Minister of Health from South Africa. „I will do a follow up on those committments. I have done that before and as long as we keep following it up, we will see the result. We cannot just do one time follow up and expect things to change instantly. It is all a process and we need to monitor it.“ she explained. However, for follow up of the committment from the Deputy of Minister of Health from South Africa, she said, has to be done by the local youth group „I have no authority on that one. What I can do is to empower and encourage young people in South Africa to actively do the follow up by themselves.“

For Liping, delegates who come to a conference should do the next step once they are back in their country. „They have to make sure that there are post conference concrete actions, otherwise this whole thing is just a waste of resources.“ Liping is a bit disappointed that most of the conference are attended by people who are going to the event just for the sake of it. „Attending conference is not a vacation. People should have clear objectives and mission to be at the conference.“

The next person I met was Jennifer Gatsi. She is the Director of Women´s Health Network in Zambia and also the co-chair of Community Program Committee for the conference. This is her second conference, the first one she attended was Toronto in 2006. Jennifer was more concerned about the facility for the people, especially drink, „I did not see any free water station here. Even though the tap water quality is good here, but you cannot expect people to go to the toilet to refill their bottle. And for some people it is not a common practice, so a lot of them was having quite an awkward moment to do so. Toronto had so many water station. So it was good for people who needs to take their medication, because the station was everywhere.“

Another thing that she thinks more to regression rather than progression was the PLHIV Lounge. „It is very nice and spacey but it is very far from the Global Village, while we all know that most of the community members are hanging around the Global Village. It gives the impression that they want to isolate the PLHIV.“ But there are always good things that she could find. She found the registration was very well organised and the process was promptly done. Another thing that she thought was important is the transportation. „Vienna has a very good transportation system. It is very easy to get around the city or to travel from the hotel to the conference venue. I have not heard a single complain about this. I did not attend Mexico conference but I heard a lot of stories regarding the shuttle there. On the opposite, people were happy with the PLHIV Lounge there. So, I guess you cannot please everyone in this regard.“

As a leading activist in her country, Jennifer is very busy during the conference. She is the point person for a session on law reform and at the same time she is also having a lot of speaking sessions,“It has been hectic for me, but I enjoy it. I see most of the session now are interliked to one another and had integrated several groups altogether.“ One thing that she did not find in other conference is that the number of disabled delegates, „Vienna is a city that is very friendly to disabled people. I am happy that they are finally can attend the conference because of the enabling facility here. Their issue is just as important and they are often forgotten.“

As the Co-chair of Community Program Committee, Jennifer is feeling proud to see how things are shaping up, „It is like watching your baby grows.“ There are several things that she thinks needs to be improved which is the effort from the organiser to support the committee members to attend and give decent accommodation to the scholarship recipients. „The committee members are the ones who put things up together. It is not fair that their attendance is not guaranteed by the organiser. They should be prioritised because without them, this conference would not be happening.“

She expects to see some concrete committment from the government of Eastern European countries. Also, she expects that women living with HIV in Austria will be more inspired to start their own movement. „As our local committee member said once, the positive women here are very introvert and full of fear. I hope by attending this conference and seeing a lot of positive people are comfortable with their status, they can slowly follow our path. Also, I hope the government and the society here will start to treat the PLHIV with more respect so they can have more freedom in expressing themselves.“

for Jennifer, going to conferences means networking, get new information, share best practices, share challenges and making new friends. „Of course advocacy is included, but I guess I do not need to mention that because that is what everyone is doing here...“