July 2012
By Karyn Kaplan
According to the Universal Declaration of Human Rights and subsequent treaties, all people have a fundamental right to the highest attainable standard of health, as well as a right to the benefits of scientific progress and its applications. Yet many governments in the global South are unable to even progressively provide these rights to their people. Excessive patent protections and the high price of drugs, especially for people in the global South, make the prospect of groundbreaking new treatments, such as those in the hepatitis C pipeline, bittersweet. The promise of new medications is meaningless in much of the world where there is no access. The following story describes a unique partnership between activists in the global North and South, first introduced by a harm reduction activist on the Lower East Side, to overcome this cruel reality.
For decades, Thailand’s dual HIV and HCV epidemics raged among people who inject drugs, with prevalence rates of 50% and 90%, respectively. But the government chose to ignore the crisis, denying proven prevention and treatment interventions. In 2002, Paisan Suwannawong, an HIV-positive injecting drug user (IDU), and New York-based AIDS activist Karyn Kaplan founded Thai AIDS Treatment Action Group (TTAG) to respond to this government neglect. TTAG took up the fight against HIV-related discrimination at the policy and program levels by providing information, trainings on leadership, and advocacy skills to people living with, and at risk for, HIV and hepatitis C.
In the 1990s, Thailand had become a global role model in addressing sexual transmission of HIV, due in large part to civil-society involvement in its public-health response. Yet this did not translate to success among marginalized and criminalized populations. The government denied the provision of clean injecting equipment to drug injectors, who faced extreme social exclusion. Methadone programs did not adhere to international standards; participants were forced to taper off methadone unsuccessfully three times before they were eligible for maintenance therapy. People who use drugs were often forced to quit in order to receive health care, and for years were denied antiretroviral therapy.
Historic Global Fund Grant for Harm Reduction
In 2002, the same year they cofounded TTAG, Paisan Suwannawong and Karyn Kaplan helped to establish the Thai Drug Users’ Network (TDN). As the founding chairman of TNP+ (Thai Network of People Living with HIV/AIDS), a group focused on advocating for universal access to treatment for HIV/AIDS, Suwannawong applied his activist skills to highlight and help bridge gaps in HIV treatment access for this marginalized group.
One of TTAG’s first major successes was to secure funding from the Global Fund to Fight AIDS, TB and Malaria (GFATM) for peer-driven harm reduction. TTAG chose to bypass the traditional “country coordinating mechanism” because then–Prime Minister Thaksin Shinawatra’s government was waging its most repressive drug war, in which tens of thousands of people were forced into drug “treatment” centers, blacklisted, and arbitrarily arrested (and worse). With this funding, TTAG established Thailand’s first program to provide comprehensive HIV prevention services to people who use drugs.
While the project helped establish some much needed infrastructure for HIV services for people who use drugs, wide swathes of the country did not have syringe exchanges, peer outreach, education and counseling programs, or drop-in centers. The government remained inert, torn between compelling public health evidence and political hostility. Meanwhile, drug users themselves were organizing advocacy networks to bolster efforts at the national level.
Hepatitis C Emerges as a Priority
Issues emerging out of peer outreach efforts included police harassment and abuse, discrimination in the health care setting, and a lack of information on overdose and hepatitis C coinfection; HIV was simply one of a litany of daily problems faced by people using drugs. In response, TTAG established various projects, such as: a human rights documentation and training initiative, an overdose prevention and management project, and an HIV/HBV/HCV coinfection education and advocacy project (the “Coinfection Project”). The Coinfection Project began in 2007 as the drug user community was seeing increasing numbers of peers getting sick and dying from untreated chronic hepatitis C, and those coinfected with HIV were not being prescribed the best available HIV treatment regimen.
Empowerment through Education: A TTAG/TAG Collaboration
Thailand had community advocates desperate for information; TAG had the scientific expertise, with a unique activist bent that lent itself to adaptation for community-driven advocacy initiatives. In 2007, TTAG invited Tracy Swan, TAG’s Hepatitis/HIV Project Director, to Thailand. Her job was to help map the problem, consult with people who use drugs and people living with HIV/AIDS at regional workshops to understand—and to answer—their questions and concerns about HCV.
First, Swan accompanied Suwannawong and Kaplan to Bangkok, Chiang Mai, and Had Yai, three hot spots of drug injection and HIV/HCV in Central, Northern and Southern Thailand, to address community questions and concerns about HCV. It was clear that, from an informational standpoint, the affected community was starting at point zero: despite astronomical prevalence, the government had simply ignored the problem, and no screening, prevention or treatment programs were in place. Community questions were basic: “Can hepatitis B virus (HBV) turn into hepatitis C?” “If you’re poor, can you get treatment?” “How can hepatitis C be prevented?” and “Is it a disease of the kidneys?” Others had never heard of the hepatitis C virus.
At the same time, TTAG and TAG codeveloped a “Standard of Care” survey to find out if—and which—viral hepatitis diagnostics and services were offered at health care centers and hospitals around Bangkok; what they cost; and whether or not people with HIV/AIDS and people who use drugs would be eligible. The survey also examined barriers to provision of these services, such as lack of information or reluctance among providers.
Ultimately, the TTAG/TAG consultations generated a community-based, peer-led advocacy strategy similar to the one that was successful with HIV. Tracy Swan worked with Lei Chou, TAG’s HIV/Hepatitis Project Coordinator, to weave survey results, questions, concerns, and gaps in access to viral hepatitis services into an HIV/HBV/HCV Education and Advocacy curriculum[1] for peer educators, focusing on IDU-specific issues. The curriculum was translated into Thai by Anusorn Quamman, a meticulous translator deeply familiar with TTAG’s work and specifically trained in medical translation, and reviewed by the communities consulted as well as specialist clinicians in Thailand and the United States. In 2009, the curriculum was piloted for 30 activists at a four-day national-level training workshop held in Cha-am district on the eastern seaboard.
Setting up a National-Level Movement
Activists in Thailand knew from their HIV/AIDS treatment advocacy campaign, which led to antiretroviral therapy (ART) being covered under universal health care, that information and education were not enough. First, a critical mass of informed people must get educated; then, an action plan must be developed to push urgent priorities onto local and national policy agendas. TTAG mobilized financial support from key donors who were interested in contributing to a stronger response to the problem of viral hepatitis coinfection among Thailand’s drug users and people living with HIV/AIDS.
Over the next few years, TTAG cultivated additional funding to educate hundreds of people who use drugs and people living with HIV/AIDS across Thailand about viral hepatitis and HIV. By the end of 2011, TTAG’s Coinfection Project had trained six teams of four HIV/HCV peer educators in three regions of Thailand (North, Northeast, and Central), more than 200 people living with HIV/AIDS, and 60 IDUs. In 2012, the Coinfection Project expanded to include the South. In each region, TTAG nurtured more trainers and funding was channeled to local groups of HIV-positive people to continue the movement at the local and provincial level.
TTAG’s cadre of coinfection advocates identified access to testing as the first step to establishing demand for treatment. In response to the lack of access to HCV diagnostics and treatment, the Coinfection Project’s manager, Kamon Uppakaew, organized the Project’s first peer-led research initiativein 2011. This study was designed to assess barriers to HCV diagnostics and treatment, and inform strategies to improve access. TTAG, with technical assistance from colleagues at the HIV Netherlands Australia Thailand Research Collaboration (HIV-NAT)/Thai Red Cross, developed a research protocol and questionnaire, and surveyed 153 people living with HIV/AIDS across the country. Dr. Anchalee Avihingsanon, Thai HCV expert and clinical researcher at HIV-NAT, and her team set up a database for longer-term data collection by TTAG’s peer researchers. Dr. Anchalee is helping TTAG to analyze the data they have already collected, adding to the growing body of local evidence supporting HCV treatment access.
The Last Frontier: From Evidence to Action
Finally, the policy barriers had to be addressed. In 2010, TTAG’s International HIV/HCV Campaigner, Noah Metheny, Esq., helped to develop policy materials. These included an information sheet with price comparisons of pegylated interferon (PEG-IFN), ribavirin (RBV), HCV diagnostic and administrative costs across six countries in Asia, and a Thailand-specific policy brief on injecting drug use and HIV/HCV coinfection. The policy brief summarized the national situation and community demands, including the following:
- scale up evidence-based harm reduction and needle and syringe programs (NSP) for HCV prevention;
- provide access to universal HCV testing for HIV-positive IDUs;
- develop HCV treatment guidelines for the Thai context based on international best practice;
- support the Thai Government Pharmaceutical Organization (GPO) to produce or import generic versions (biosimilars) of PEG-IFN; and
- increase political support for utilizing “TRIPS flexibilities”[2] to expand access to cheaper treatment.[3]
TTAG’s advocacy continued: on World Hepatitis Day, July 28, 2011, TTAG enjoined regional branches of the Thai Network of People Living with HIV/AIDS (TNP+) to help mobilize over 150 HIV-positive people, who participated in an action at the National Health Security Offices (NHSO), Thailand’s largest payer of health care. TTAG and TNP+ demanded coinfection treatment guidelines, better public-health leadership, better HIV treatment for coinfected people, and free HCV testing and treatment. During the demonstration, activists met inside the NHSO with its secretary general, Dr. Winai Sawasdivorn, and two doctors representing the HIV and liver-disease divisions of the agency, to discuss activist demands. The government officials promised to explore options for improving access to treatment for coinfected people, such as providing HCV testing to all HIV-positive people, and offering better first-line ART options for people coinfected with HIV/HCV. Meanwhile, outside, demonstrators chanted, talked with media, and carried signs declaring, “HCV = Death,” “Pegylated Interferon = Expensive!” and “Why isn’t the Thai government doing anything about Hepatitis C?”
Other advocacy efforts, such as regular meetings with key individuals and agencies from government, industry, and civil-society groups such as HIV-NAT, the Thai GPO, Médecins Sans Frontières (MSF), and Merck (MSD)-Thailand proved fruitful, particularly in terms of sharing information that leads to better advocacy strategies.
Last year, the GPOtraveled to Viet Nam to determine whether or not to import cheaper PEG-IFN,which was being produced there, demonstrating a clear commitment to future access. Unfortunately, the producer of the purported biosimilar product was unable to provide the necessary safety and efficacy data for consideration by the Thai entities for import. HIV-NAT is committed to implementing clinical trials, including among coinfected people, to help ensure access to treatment and contribute to the body of knowledge on HCV treatment safety, efficacy, and outcomes in Thai people. TTAG met with Merck (MSD)-Thailand to discuss price reduction negotiations, to ask directly whether and how much their prices for PEG-IFN and ribavirin, as well as their HCV protease inhibitor, boceprevir, would be reduced so the Thai government could afford to put it on their National Essential Drugs List and pay for universal coverage for those who need it.
Thailand: Leader in HIV Treatment Access, also for HCV?
Merck confirmed that significant price reductions had been agreed upon in negotiations and that they had signed a formal agreement with the Thai government. As a result, the Thai government will include PEG-IFN and ribavirin on the National Essential Drugs List in 2012, so that they can be provided free under Thailand’s universal health care coverage scheme. Although the government indicated its intention to limit treatment initially to people infected with HCV genotypes 2 and 3,[4] TTAG will push to broaden eligibility criteria, especially since the IL28B CC genotype is common among Asians and associated with a higher likelihood of cure in people with HCV genotype 1.
While Thai activists are heartened by progress, until doctors can and will prescribe treatments for people who need it, the struggle continues. “We need to make sure people are supported on treatment, and that we continue to fight for access to newer, better treatments when they become available,” said Paisan Suwannawong, TTAG’s Executive Director. “I was lucky to get treatment through a donation abroad and cure my hepatitis, but I will keep advocating until everyone in my country has the same opportunity.”
HCV Activism Reaching across Asia
Asia is home to 130 million of the world’s 160 million people living with chronic hepatitis C. Drug-user activists are increasingly developing advocacy strategies and activities to respond to the utter lack of treatment access. Bangkok is home to many regional HIV and harm reduction networks, comprising thousands of directly affected people. The Asia Pacific Network of People Living with HIV/AIDS (APN+) and the Asia Network of People who Use Drugs (ANPUD) are natural allies in the push for HCV treatment. Early on, TTAG reached out to these regional networks to gauge interest in working together to expand HCV treatment access for all. TTAG, APN+, ANPUD, MSF, Seven Sisters Asia Pacific Coalition (7S), and World AIDS Campaign formed a coalition, meeting regularly to share information and strategize about policy advocacy. One of the first initiatives to emerge from this collaboration was the First South and Southeast Asia Regional Community Meeting on HIV/Hepatitis C Coinfection.
A meeting of two dozen HIV and harm reduction activists from China, Nepal, Vietnam, Thailand, India, and Indonesia was held in Bangkok in June 2010. The meeting included country situation presentations, a review of barriers to HIV/HCV diagnostics, discussion of treatment and care with a focus on intellectual property issues, and advocacy strategizing (including resource mobilization and coalition building). A web-based listserv was set up to broaden participation in the ongoing discussion. A summary report was made public.[5] Many of the workshop participants wanted to translate the TTAG/TAG coinfection manual into local languages, such as Vietnamese and Nepalese, to conduct their own peer education.
HCV activism continues to gain momentum. In India, where the bulk of the world’s generic HIV medications are sourced, groups of HIV-positive activists are organizing advocacy initiatives to bring much-needed attention to the twin crises of HIV and HCV, in particular among injectors. In February 2012, activists in Manipur, a region of India bordering Burma where injecting is prevalent and HIV/HCV rates high, sent a letter to Anand Grover, UN Special Rapporteur on the Right to Health. They requested that he investigate the Indian government’s lack of action in the face of this health crisis and publicly denounce what they felt was tantamount to the denial of the right to health and life.
In 2011, at the International Congress on AIDS in Asia and the Pacific (ICAAP) in Busan, South Korea, ANPUD led a rally targeting WHO Director-General Margaret Chan’s failure to respond to demands for increased leadership and resource commitments for HCV despite the World Health Assembly resolution in 2010 prioritizing viral hepatitis as an urgent global health concern. Dean Lewis, coordinator of ANPUD, pointed out, “Although hepatitis C is a curable disease, the medications are prohibitively expensive and out of the reach of the majority of those infected.”
Ensuring that treatment for HCV and HIV reaches everyone who needs it is the challenge of the decade. If HIV activism is an accurate bellwether, activists in Asia will broaden access to HCV diagnostics and treatment in the region and help to pioneer a global movement. Global North/South partnerships such as the one between TAG and TTAG serve as a model of collaboration for effective advocacy. Locally designed, creative solutions will also emerge. Many of the same battles on intellectual property issues such as patent protections and Big Pharma pricing policies will have to be waged—and won. The slow, hard work of peer-driven community education and activism is an integral part of the battle.
As soon as affordable treatment is within reach, civil-society networks should push HCV onto the national public-health agenda to get the resources and attention it deserves and to ensure access is equitable. Community advocates will need to join forces with providers to develop appropriate support systems for people on treatment. The work is not simple, but much of it has been done before, with HIV/AIDS. The light at the end of the tunnel is that, for HCV, we have a cure.