How did you become an AIDS activist/treatment access leader? And how did Thai people living with HIV/AIDS (PLWHA) coalesce into a movement and put treatment access on the top of its agenda?
Around the time I learned my HIV status about 12 years ago, we started Thailand's first group of PLWHAs, Wednesday Friends Club (WFC) at Chulalongkorn University Hospital. At first I just participated in their social activities and group support, recreational stuff and seminars. I got there through the encouragement of social workers at a therapeutic community (TC) for drug users where I was staying, and I and my other friends there who were positive got involved because we thought this was the only way we could survive -- it was the only thing out there for us. Our TC took us and I soon felt this is what we needed.
No one understood us at that time, and everyone was scared. PLWHAs used to come to the medical clinics and hold newspapers up in front of their faces, so as not to be recognized. No one would look at each other. So, I joined a group of HIV-positive people in my TC and we went to WFC every month, whenever we went to that hospital to get care. There were about 12 of us. We weren't that involved at first, mainly because we had the TC, but I was still interested in their activities because I felt it was a very good place for PLWHA.
We ultimately established a central PLWHA network, starting soon after the 1995 Asia Pacific Islands regional AIDS conference in Chiang Mai, where we had held a special session for the first time for all Thai PLWHA to come together and talk and strategize. At that time, we wanted to strengthen our own regions before taking the step to build a national group. But the following year we formed a national network, TNP+, and I was elected its Chairman.
Our mission at that time focused on improving the quality of life of PLWHA and all who are affected by HIV/AIDS. Our objectives included: 1) supporting and strengthening PLWHA groups; 2) campaigning for human rights and social welfare for all PLWHA; and, 3) cooperating with NGOs and government entities to move toward resolving the epidemic. At that time, the climate was full of discrimination and misunderstanding, combined with a total lack of treatment. The basics of HIV transmission were hardly understood by people in general. Doctors had no ability to treat us and had a terrible attitude toward us. The prevailing thought was that we were bad for having done this to ourselves. We did have a government AIDS Division in the Ministry of Public Health and a National AIDS Committee early on. We did not have a TNP+ budget. We came together at meetings funded, initially, by the Thai NGO Coalition against AIDS, and would meet in Bangkok about every three months. We had no funding for activities and just went to meetings we were invited to on our own money. We used those opportunities to share our experiences but we really couldn't move forward. We were determining our strengths and potential. In our second year, we focused on a long-term plan and made treatment our banner issue. We started working with NGOs who were dedicated to the right to health and treatment for PLWHA, such as MSF and AIDS Access Foundation, a Thai NGO. At our second annual TNP+ conference, we all agreed to take up a Treatment Access Campaign and chose to focus on opportunistic infections (OI), getting 100 percent treatment coverage for OI as a goal. We focused on cotrimoxazole, a cheap PCP prophylaxis.
This strategy showed that people with HIV/AIDS are the core of the infrastructure. We are critical in any plan to scale up treatment, because it is we who provide peer support day in and day out, who help each other adhere better to our meds, who take each other to the hospital and do patient advocacy and have the direct experience with these drugs and interventions. Especially now that Thailand will receive one of the largest grants (US $133 million) from the Global Fund for HIV/AIDS, TB, and Malaria, PLWHA will be a critical component of a successful strategy of expanded treatment access and care.
After five years as the Chairman of TNP+, I have stepped down but continue to work closely with them in an advisory capacity. Having seen the need for stronger PLWHA leadership, for more clear information and skills to build capacity in the grassroots, and wanting to bridge the gap between us and our regional PLWHA partners and international AIDS activist allies, I have formed my own treatment advocacy group, the Thai AIDS Treatment Action Group (TTAG). It recognizes the need to support the advocacy capacity of people living with HIV/AIDS on the local, national, and international policy level. I am very excited to start the activities and start raising the voice and strength of PLWHA in holding our government accountable to its obligations and promises in terms of treating people living with HIV/AIDS in Thailand.
Recently, people living with HIV/AIDS and some NGO allies made history in Thailand's Intellectual Property court. Can you tell me about that victory against Bristol-Myers Squibb (BMS) and its significance for treatment access in Thailand?
We are fighting to produce generic ddI tablets, a fight we started about three years ago. At first, we demanded our government to order a compulsory license. They were afraid of U.S. trade sanctions, a very real threat to our country, so we were forced to produce only powder form ddI, which as you know is very difficult to tolerate. The ddI issue emerged because there was a working group of academics and lawyers looking at the problems of drugs in terms of patent issues and drug company monopolies, and we joined with them as the Thai national network of people living with HIV/AIDS (TNP+) began to focus more on treatment access issues and to do something about deadly restrictions on our country's ability to provide lifesaving medication to PLWHA. Out of that collaboration, between the consumer rights people, intellectual property and pharmaceutical experts, and PLWHA and NGO allies, came the court case that was won by two people living with HIV/AIDS and an AIDS advocacy group, AIDS Access Foundation, against Bristol-Myers Squibb, the patent holder, and our Department of Intellectual Property on October 1, 2002, in the Intellectual Property Court.
Winning in the court is significant for us because patents are killing our people and people with AIDS around the world. In fact, there were going to be a few more PLWHA plaintiffs on the case but, in the year it took for the first case to be decided and to submit papers for the second case, they died. We must let people know that it is not just the product patent that is bad, but that even the process patent is bad. BMS claimed they used an "innovation" that gave them the right to keep the ownership of buffered ddI tablets, but adding a buffer is common knowledge to pharmacists. Clearly their motive was greed and exploitation of our system. The court did rule their application was illegal, and now we are moving into a second court case against BMS, demanding they revoke the patent altogether.
In fact, the first time people living with HIV/AIDS in Thailand held a public demonstration, it was about a treatment access issue. We were expanding access to medication for opportunistic infections and came up against the reason that ARV could not be made as available as OI drugs -- it was because of patents. We immediately put treatment access at the top of the TNP+ agenda, started to become familiar with the issues such as TRIPS (Agreement on Trade-Related Aspects of Intellectual Property), and demanded our government invoke a compulsory license for ddI because, according to TRIPS, we had the right to address our public health crisis.
Two hundred people stood in front of the Ministry of Public Health, for three days. As I mentioned, the government would not do it, citing fear of trade repercussions. Even though I got a personal letter from Charlene Barshefsky, then U.S. Trade Representative, promising there would not be action taken against our government, Thailand remained reluctant. But here we are today, victorious in the courts; people with HIV/AIDS beat Big Pharma. I hope now our Government Pharmaceutical Organization will immediately start producing generic ddI according to its legal right.
How do you see the international AIDS treatment access movement impacting on or useful to your movement?
We can see many barriers for people with HIV/AIDS to access treatment. Mainly trade regulations like the TRIPS agreement, and other negative impacts of globalization that have increased rather than decreased poverty, as its promoters promised. Resources are scarcer now. The promises made about the benefits of free trade are not true. Poor countries are taken advantage of. Capitalist concepts like this have been detrimental to our cultures and economies.
In relation to AIDS, patents that give long monopolies on drugs that we need today to stay alive are deadly to people with HIV/AIDS. When we became conscious of this in Thailand, when we learned about the drug company monopolies that were holding back our own capacity to make affordable drugs, we saw that strategically we needed to work together. But in Thailand we have many pressing issues nationally, and working internationally, until more recently, was not a priority. And of course the language barrier is a major impediment. But it is helpful to have help in watching our government and it is helpful to have help in addressing the corrupt drug company influence on our government. It is also necessary to challenge new and powerful entities like the World Trade Organization and of course the U.S., which needs to stop waging a war on poor people around the world.
Since we have started working with international partners on treatment access issues, you can see many things have moved forward. There was the court case in South Africa, dropped by the 39 drug companies in the face of international public pressure, and there was Thailand's activist cooperation with S.A.'s TAC when they came here to buy cheap fluconazole to take back home in defiance of high drug company pricing and international trade restrictions on exports of generics. Thailand, too, had a lot of international support when we demanded coverage of antiretroviral therapy under our universal health care plan last year. AIDS was one of two diseases whose treatments were excluded; after our demonstration we received a commitment from the Ministry of Public Health to cover ARV. Also more recently in our court case battle against the BMS patent on ddI, we worked together with international groups like Medecins Sans Frontieres/Doctors without Borders, who often are our allies on the ground here in Thailand, and with the International Gay and Lesbian Human Rights Commission (IGLHRC) and Health GAP to let people know about the case and ask for advocacy support including press coverage and a letter writing campaign. International pressure on our government, or on the U.S. government, and on multinational corporations has been effective sometimes, but the truth is we need more. As I said, there are barriers to working cross-culturally but we will move forward.
The next International AIDS Conference will be held in Bangkok in the summer of 2004. What are the Thai people living with HIV/AIDS focusing on in terms of treatment advocacy? Describe your expectations from international partners. How do you envision working toward these goals?
Thailand could be the next Brazil. We have excellent capacity to produce generic drugs and in fact 70 percent of our AIDS treatment budget goes to Thai-produced generics. We produce a combination drug called GPO-vir (3TC, d4T, NVP). Yet, our national AIDS treatment budget, which is 250 million Thai Baht (US $5.8 million), has hardly increased in five years. Antiretroviral therapy is still excluded from coverage under our universal health care plan, despite government promises almost one year old now. We need our government to stand for us, to stand with us as PLWHA in particular in their position toward the WTO and the U.S. The Doha Declaration upheld the precedence of health over trade and profit. What more should our countries need to fulfill their obligations to improve the health of all without discrimination? Yes, we got a huge Global Fund grant, but that should not be an excuse for the government to not continue putting additional funds toward its national AIDS treatment budget. PLWHA must be included meaningfully in the government's plan to improve the quality of life of people living with HIV/AIDS -- many people have jobs because of AIDS, many people get funding for themselves because of AIDS, but how many of those people are people living with HIV/AIDS?
We PLWHA have the right to self-determination and the right to have a voice, not just a seat, at the table where decisions that affect our lives are made. We hope to gain regional and international solidarity for our advocacy goals and objectives. The government in its Global Fund proposal laid out benchmarks for the provision of AIDS treatment and comprehensive care. Yet it has a weak policy and no strong commitment for rolling it out immediately. We will hold them accountable to those stated goals, and at the same time build our PLWHA capacity to be leaders, to better advocate for our positions, and to ensure a real partnership with NGOs and government through our strong and indispensable participation in the plan to scale up treatment. We are starting now to build coalitions and to strengthen our own movement -- by the International AIDS Conference in Bangkok, we hope to be another model for the world, like Treatment Action Campaign was in Durban; to show that we have a voice, we know what we want, and we have the capacity to work effectively toward realizing our right to health and life. We are going to use that opportunity for visibility.
Back to the GMHC Treatment Issues November 2002 contents page.