Action and Advocacy: Participation by people with HIV/AIDS in Treatment programmes in Thailand

Abstract

Civil society in Thailand has been a driving force behind efforts to increase access to treatment for HIV/AIDS. Activism for access to medicines has brought civil society and nongovernmental actors together to fight for a single cause, creating a platform for joint action on practical issues to improve care for people with HIV/AIDS within the public health system. The national network of people with HIV/AIDS has provided concrete support for patients and for the health system as a whole, and their efforts have contributed significantly to the availability of affordable generic medicines, early treatment for opportunistic infections, and an informed and responsible approach towards antiretroviral treatment that is critical to good adherence and treatment success. This change in perception of PHA from 'pssive receiver'to 'co-provider' of health care has led to improved acceptance of and support for people with HIV/AIDS by the health care system. Efforts will continue to be needed to ensure access to newer medicines, in particular for second-line antiretroviral medicines that are currently only available as prohibitively expensive monopoly products.

Introduction

Civil society in Thailand has been a driving force behind efforts to increase access to treatment for HIV/AIDS.  Over the years, people with HIV/AIDS (PHA) have played a central role in promoting access to AIDS drugs and contributing to patient-centred care within the public health sector.

Their role is recognized by the Ministry of Public Health as central to the successful expansion of antiretroviral treatment through activities that encourage community education, reduce discrimination, provide peer support, and support the right of government to make and use affordable generic drugs (Kunaratanapruk, 2004).

As this paper sets out to describe, the evolution of the PHA network in Thailand is based on both activism and action. Activism for access to medicines has brought civil society and NGO actors together to fight for a single cause, creating a platform for joint action on practical issues to improve care for PHA within the public health system.

Civil Society and HIV/AIDS in Thailand

Thailand's HIV epidemic began in 1984. Nongovernmental organisations (NGOs) have played an important role in influencing government policy related to HIV/AIDS. An early success was the disbanding of an 'AIDS Bill' proposed in 1990 that would have required HIV testing of any member of a 'high-risk' group without consent (World Bank, 2000).

The first PHA group was established in 1990 in Chulalongkorn Hospital, Bangkok, meeting once a week with social workers and nurses. With time more groups were established and in 1995 their contribution was officially recognized by an Ministry of Public Health policy that encouraged the formation of PHA groups within the hospital system. Today there are around 800 PHA groups (World Health Organisation, 2005) mainly supported by government funds channelled through district and provincial hospitals. Members are generally farm labourers, factory workers, or unemployed who have received little in the way of formal education beyond primary education.

Initially the engagement of PHA groups in HIV care was limited to social support, and the potential of PHA to push for change was limited as groups were isolated from each other and depended on funding channelled through their hospital. This changed with the establishment of the Thai Network of People with HIV/AIDS in 1998. The founding vision of TNP+ was that PHA should be able to live with dignity and play an active role in society. To achieve this TNP+ established objectives to ensure participation by PHA in all activities aimed at solving HIV/AIDS related problems and understanding by members of their rights. National and regional TNP+ offices were set up, staffed by PHA activists whose task was to develop members' capacity to work in a coordinated manner. In recognition of their contribution to supporting PHA over the years, TNP+ was awarded the Red Ribbon Award in August 2006 at the International AIDS Conference in Toronto.

Another important local HIV/AIDS organization, the AIDS Access Foundation (ACCESS), was established in 1991 focusing on provision of support related to the social consequences of HIV/AIDS. ACCESS provides counseling services and also works with the media, advocating policies to reduce discrimination.

Médecins Sans Frontières (MSF) began a home-based care program for PHA in Thailand in 1994. In 1999, the Health Care Reform Office of the Ministry of Public Health began to promote a standard level of care for chronic disease at district level; MSF together with TNP+ and ACCESS established several pilot projects to explore the potential of district hospitals and their associated PHA groups to provide HIV/AIDS care.

Most funding for TNP+ and ACCESS comes from external institutional donors: one common constraint for many local NGOs is that international donors are eager to fund grassroots activities but will not support the running costs of such organisations. MSF supports running costs of TNP+ and provides funds to overcome delays in dispersal of funds, a not uncommon problem that can be fatal for a small NGO with limited and fragile means.

Campaigning for access to antiretroviral treatment

In 2000, the Ministry of Public Health launched an 'Access to Care' programme for HIV/AIDS. However, its reliance on expensive brand drugs limited beneficiaries to around 1,500 people. Large scale provision of antiretroviral treatment was only possible once the Thai Government Pharmaceutical Organisation (GPO) began to produce generic antiretrovirals, in particular the fixed-dose combination of three antiretroviral drugs (GPO-vir), launched in 2002. This development was strongly influenced by the activities of PHA.

GPO had begun research and development of antiretrovirals in 1992, beginning with zidovudine and didanosine. Zidovudine was launched in 1995, but the production of generic didanosine was blocked when a Thai patent was granted to Bristol-Myers Squibb in 1998. The patented version cost more per month (US$136) than the average wage of an office worker (US$120), and lack of access to didanosine provoked the first public demonstrations against intellectual property restrictions to medicines (Limpananont, 2002) with members of nongovernmental organisations protesting outside the US Embassy in Bangkok.  The US government has pressured for stronger patent protection through sanctions on a number of Thai exports, forcing Thailand to implement a patent system much tighter than required by the World Trade Agreements. As a result, safeguards in patent law designed to protect public health have either been weakened or removed (Wilson, Cawthorne, Ford & Aonsongwang, 1999; Supakakunti, Janjaroen, Tangphao, Ratanawijitrasin, Kraipornsak & Pradithavanij, 1999).

The 'Didanosine Working Group' was formed in 1999, bringing together NGOs, TNP+, academic pharmacists, lawyers and government officials from the GPO. The GPO submitted a request for a compulsory license, and this request was backed by public demonstrations in December 1999, with over 300 PHA gathering outside the Public Health Ministry for three days demanding a compulsory license be issued (Ford, Wilson, Bunjumnong & von Schoen-Angerer, 2004). This was the first occasion in Thailand when HIV positive people braved stigmatisation to stage public demonstrations and proved to be a watershed event in terms of awareness and self-confidence by Thai PHA.

However, as a result of strong pressure from the US government, (Hecklinger, 1999) the Ministry of Public Health announced that a compulsory license would not be issued. Activists then mounted a legal challenge against the patent of didanosine, filing a lawsuit in May 2001 claiming that details of the patent had been unlawfully altered after the application had been filed rendering the patent invalid (Ford, Wilson, Bunjumnong et al, 2004). After two years, the court ruled in favour of the plaintiffs, opening the way for generic production. This ruling has set an important international precedent that essential drugs are not just another consumer product but a human right, and that patients – not just companies – are injured by patents.

A similar victory was gained more recently when 500 people protested outside the offices of GlaxoSmithKine in Bangkok, forcing the withdrawl of a patent application for the drug combination of lamivudine+zidovudine. The patent would have forced the Government Pharmaceutical Organization (GPO) to stop producing its version, which is six times less than GSKs brand version (Anon, 2006).

These activities did much to strengthen support for the GPO, which today produces antiretroviral drugs and combinations in a range of dosages, including a fixed-dose combination of stavudine, lamivudine and nevirapine) which is the backbone of national treatment program, costing $US 29 per patient per month compared to $490 per month for brand equivalent.

PHA in Thailand have recently been obliged to mobilize against US trade pressure to force Thailand to accept further restrictions on access to generic medicines through a number of 'TRIPS-Plus' provisions, including: extending drug patent terms beyond the WTO-stipulated length of 20 years; imposing five-year data-exclusivity provisions which would delay production of generic versions of drugs once a patent-term has expired; and restricting the grounds on which the Thai government can issue a compulsory licence. This is a particular concern given the growing need for second-line antiretrovirals: a recent evaluation by the World Health Organisation (WHO) predicted that by 2020 the cost of antiretroviral therapy with second-line regimens could reach US$ 500 million per year.  The price of second line therapy clearly has to be dramatically reduced. (Ministry of Public Health & World Health Organisation, 2005)

In early January 2006 nearly 10,000 protesters gathered outside a hotel where Thai and US negotiators were engaged in free-trade talks. The protestors demands were in line with the recommendations of a UN technical consultation which concluded that Thailand should preserve flexibilities contained in the TRIPS agreement to the fullest extent, should not accept any TRIPS-plus provisions proposed in the FTA, and should consider using compulsory licenses for second-line HIV drugs (Ministry of Public Health, Thailand, Chulalongkorn University, United Nations Programe for HIV/AIDS, United Nations Development Programme & World Health Organisation, 2005). (In a rare public insight into US influence on the WHO, when these findings were reiterated in a newspaper article by the WHO country representative, the US successfully pressured WHO Geneva to have him removed from his post) (Williams, 2006). The negotiations, which had been ongoing for 2 years, were effectively disrupted by the protestors. Their concerns were acknowledged as legitimate by the Thai Government, and the head Thai negotiator for intellectual-property rights declared demands by the US for Thailand to tighten up drug patenting as "unacceptable" (Hongthong & Thalang, 2006). Nevertheless, there are moves elsewhere within the government to implement the US demands. PHA in Thailand will continue to push for intellectual property to be removed completely from the trade negotiations.

PHA establish a community-based antiretroviral drug supply

As well as leading to concrete gains in terms of access to medicines, these advocacy efforts led to increased knowledge and confidence amongst among PHA, giving hope for many whose outlook could previously be described as resigned despair (Ford, Wilson, Bonjumnong et al, 2004).

Parallel efforts were made to ensure that as the cost of treatment came down, availability increased. A Buyers' Club was established in October 2000 by TNP+, MSF and ACCESS (Kreudhutha, Donmon, Uppakaew, Cawthorne, Bunjumnong, Wilson et al, 2006). The Buyers' Club dealt directly with the GPO to purchase generic antiretrovirals, and also successfully negotiated a preferential price for Efavirenz (patent protected in Thailand).  Medicines were made available within a supportive environment: doctors in public hospitals wrote a prescription which the patient took to the PHA group to receive their medicines together with appropriate treatment information, counselling, and assistance in planning dosage schedules.

The Buyers' Club in Thailand was an organised effort by PHA to ensure that appropriate and affordable treatment reached a modest number of people. Doctors who encountered the Buyers Club had previously been frustrated by the lack of availability of affordable medicines – antiretrovirals had long been regarded by hospital pharmacies as high-cost, low-demand drugs, and not kept in stock – and were very supportive.

By June 2002, 21 Buyers' Club branches across the country enabled 1081 PHA to access treatment. Since then numbers have diminished as PHA gain access to treatment through Ministry of Public Health programs. In 2004 the Buyers’ Club wound down its activities in Thailand as government services were scaling up and antiretrovirals become more widely available. The Buyers' Club continues to provide antiretrovirals to PHA from Iran, China and Malaysia.

Expanding access to prevention and treatment for opportunistic infections

Organised involvement of PHA in the provision of medical care began with a push to increase access to medicines for opportunistic infections. Lack of access to prevention and treatment for opportunistic infections has been a major problem in Thailand, particularly prior to their inclusion in the national health insurance scheme in March 2001 (Ministry of Public Health, 1999). Surveys carried out by MSF in 2000 among TNP+ members found that less than half of symptomatic PHA received co-trimoxazole prophylaxis and PHA were also failing to access treatment for other serious opportunistic infections such as tuberculosis (TB) and cryptococcal meningitis, for which treatment was available in principle.

In November 2000, TNP+, MSF and ACCESS launched a project to increase access to prophylaxis and treatment for PCP, TB and cryptococcal meningitis. It was considered essential that PHA should participate actively in their own treatment and care if they were to develop the knowledge and understanding necessary to stop believing that AIDS was a death sentence. Therefore, the project began with training for PHA from 150 groups across the country to help them recognise early signs and symptoms of symptomatic disease and to support each other in accessing health care and medical follow-up. (Panel 1) An evaluation carried in November 2002, 2 years after the project began, found that access to correct therapeutic interventions for the three opportunistic infections had increased from less than 50% before the project began to above 80% (Kumphitak, Kasi-Sedapan, Wilson, Ford, Adpoon, Kaetkaew et al, 2004).

PHA support scaling up of antiretroviral therapy

This experience showed that with appropriate training and support PHA can develop a role as partners in provision of health care. PHA now had confidence to push for a change of role from receiver to co-provider of health care, and contribute actively to a successful outcome of the Thai government's ambitious scaling up of antiretroviral treatment.

In keeping with its founding vision, TNP+, together with MSF and ACCESS, jointly developed a strategy for ensuring a central involvement of PHA in the government rollout of antiretroviral therapy. To this end, the care-model of an existing District Hospital pilot project (Panel 2) was developed into "Comprehensive and Continuous Care Centre"(CCC Centre) model, with PHA working as peer counselors within the hospital system. The objectives of the CCC Centre project are that all PHA can access care, and that PHA participate in development of the healthcare system.

To enable PHA to become active partners in the provision of care (Figure 1), they needed to develop communication and basic counseling skills, and learn how to make a client-based care plan. Training in communication and basic counseling skills was developed to help PHA peer counselors listen to clients, give them relevant information and respond to their questions in a supportive way. The aim was not to produce professional counselors, but peer counselors who would understand some key aspects of the counseling process: confidentiality; non-judgmental acceptance of clients' problems; and a client-centered approach in which the client explores possible options and works out his/her own solution rather than accepting solutions based on the opinion of the counselor.

In 2002 the Global Fund agreed to fund the establishment of a PHA peer counselor network, and by September 2005 146 hospitals had established CCC Centres with 735 peer counselors providing support to 17,882 PHA taking antiretroviral therapy, an average case-load of 24 clients per peer counselor. Amongst hospital staff, and amongst PHA themselves, there was sometimes a lack of trust and lack of belief in the potential of PHA. Negotiation for PHA involvement had to be carried out hospital by hospital, with much depending on the openness of the hospital director and the nurse or social worker who supervises the PHA group and on the competence of the PHA.

The range of skills required by the PHA counselors and the areas in which they need support are well described by presenting findings of an internal evaluation conducted between May and August 2004, covering 702 peer counselors from 111 CCC Centers that had been running for at least six months (Figure 2). Most (88%) understood the objectives of the project Knowledge and technical skills were assessed as strong or very strong in almost half (47%) of centers, but 12% were weak or very weak: although peer counselors could answer questions about common serious opportunistic infections (TB, PCP, Cryptococcal meningitis) they were unable to give information about less common conditions (such as cytomegalovirus retinitis). Communication and counseling skills were found to be weak or very weak in 10% of centers; this was mainly because of difficulties in maintaining a non-judgmental attitude during counseling. The majority of centres showed strong or very strong teamwork (76%) and financial management (71%). Record keeping was a relatively weak area with only half (52%) being strong or very strong; in general, centres with weak record keeping skills kept records of all patient interventions but were unable to use these records to plan care. It was felt that the good coordination with hospital staff (strong or very strong in 66% of centres), would compensate for some weaknesses in knowledge and record keeping.

The CCC Centre model has been found to be highly cost-effective. A joint Ministry of Public Health/World Bank study estimated that systematically providing PHA peer support in treatment sites throughout Thailand would increase the cost per life year saved by less than $US 40, making this a good investment (the most common triple-therapy costs $US 360 per year) (Revenga, Over, Masaki & Peerapatanapokin, 2006). This estimated cost is based on support for PHA patients taking antiretroviral medication, but in addition peer counselors provide a range of support for patients not yet taking antiretrovirals and the support team helps new PHA groups to develop into CCC Centres.

Costs have to date been largely covered by the Global Fund. An external review of the health sector response to HIV/AIDS in Thailand recommended that community-based organizations should be more effectively financed by national and local sources (Ministry of Public Health & World Health Organisation, 2005).  In May 2006 The National Health Security Office provided $US 425,000 to establish 78 new CCC Centres and to fund additional support team staff. This is the first time government funding has been provided for the PHA support network, rather than for individual PHA group activities and represents an important step forward in legitimizing the central role of PHA in supporting HIV/AIDS care.

This model of PHA participation in care is today being expanded to neighboring countries. Since 2004 TNP+, MSF and ACCESS have established a programme to share their experiences of providing comprehensive care with other countries in the Mekong sub-region: Cambodia, India, Laos, Vietnam, southern China and Nepal.

Conclusions

People with HIV/AIDS have made an essential contribution to overall provision of care for their peers in Thailand. Motivated by a combination of despair in front of death, a strong desire to help friends who fell ill, and anger at a system that made life-saving medicines unaffordable for the majority, the national PHA network has provided concrete support for patients and for the health system as a whole. These efforts have contributed significantly to the availability of affordable generic medicines, early treatment for opportunistic infections, and an informed and responsible approach towards antiretroviral treatment that is critical to good adherence and treatment success.

Successful campaigning for access to affordable medicines has depended on strong working relationships between PHA, academics, NGOs, key government officials, and informed journalists who have been willing to take the time to understand complex issues. Such campaigning will continue to be needed to ensure access to newer medicines, in particular for second-line antiretroviral medicines that are currently only available as prohibitively expensive monopoly products.

This activism has been supportive of, rather than antagonistic towards, government: pushing the government to increase availability of affordable antiretrovirals, and then providing practical support to the implementation of treatment programmes when the medicines become available.

The role of PHA in providing peer support has been widely accepted and encouraged in Thailand for many years. This change in perception of PHA from 'assive receiver'to 'o-provider'of health care has led to improved acceptance of and support for PHA by the health care system. A few years ago, health care for AIDS was mainly provided from specialist centres; today, nearly every hospital in Thailand accepts its responsibility to provide care for PHA, and the gap between doctors and patients has been markedly reduced. Increased control over their own health has also brought benefits for PHA in terms of self-image, confidence, and dignity. Empowerment has come from the recognition that many of the barriers to care – lack of access to affordable medicines, lack of national drug supply, lack of peer support – are barriers they have been able to overcome themselves.

Funding: MSFs work in Thailand is funded by private donations, with additional funding from the European Commission, The Global Fund for AIDS, TB and Malaria, the Ministry of Public Health, Local government contributions, and the Rockefeller Foundation

Conflict of Interest: None

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Panel 1: Campaign to improve access to treatment for opportunistic infections
Activities with PHA
• Training of core PHA group members about basic HIV/AIDS care and prevention and treatment of opportunistic infections
• Follow up of PHA patients by core group members through home visits, individual counseling sessions and monthly group meetings
• Capacity building for some experienced core PHA membersto become trainers
• Monitoring and evaluation of activities by PHA themselves
• Development of a system of data collection which could be managed by PHA
  
Activities with health care services
• Seminars at provincial health offices to raise awareness about co-trimoxazole prophylaxis
• Discussions with health workers to improve awareness of the need to provide treatment and care for PHA.
• Negotiations with hospitals to increase stocks of co-trimoxazole to meet increasing demand; to assist PHA to access TB programs; and to increase the availability of generic fluconazole to treat Cryptococcal meningitis.

Impact on participating core PHA group members 
• Key PHA in participating groups developed skills to provide care at home for common HIV related symptoms and knowledge about which symptoms require hospital referral
• Understanding of natural history for HIV infection, including relationship between CD4 count, level of immunity and occurrence of opportunistic infections
• Understanding of the need for prophylactic treatment of PCP and cryptococcal meningitis and the need to follow TB treatment to completion
• Understanding of the importance of good adherence to medication

Impact on TNP+
• The concept of peer counseling established in TNP+
• Adoption of the message that 'AIDS can be treated' as a campaign strategy

Panel 2: Ban Laem District Hospital pilot HIV/AIDS care and treatment project

Ban Laem is an agricultural and fishing district in central Thailand. The 30-bed hospital serves a population of 40,000 people. A PHA group was established in 1998. The number of PHA members attending group meetings on a regular basis increased from four in 1998 to approximately 120 in 2005. In 1999, the hospital asked MSF to support care and treatment for HIV/AIDS. From 1999 to 2001, MSF worked with health staff and PHA group on management of opportunistic infections. From 2002 to 2005, MSF provided antiretroviral drugs and technical support for antiretroviral treatment to 123 PHA. In 2005, antiretroviral drug supply was handed over to the Ministry of Public Health’s treatment programme. Care and treatment was provided within the hospital during two half-day clinic sessions per week, by a care team of 1 doctor, 2 nurses, 1 pharmacist, 1 laboratory technician and 4 PHA peer counsellors. Peer counselors also made home visits on 3 days per week and ran monthly PHA group meetings.  With improved management of opportunistic infections, mortality rate in PHA attending the hospital fell from 69% in 1998 to 25% in 2001. With the introduction of antiretrovirals, mortality had fallen to 10% in 2005.

Figure 1: PHA – patients, group members and peer counselors

Figure 2: Strengths and weaknesses of the CCC Centers (mid-2004)

 
 
References:

External Review of the Health Sector Response to HIV/AIDS in Thailand. Ministry of Public Health and the World Health Organization Regional Office for South-East Asia. 7–19 August 2005. ISBN 92 9022 265 7. Availablefrom WHO Country Office, Tiwanon Road, Nonthaburi, 11000, Thailand