Lecture on antiretroviral treatments for aids

Since HAART (Highly Active Anti Retroviral Treatments) have been available to treat AIDS, health care scientists and professionals have requested social scientists to help them understand if patients take their treatments, how and why they take them or don’t take them. Though it might be considered as a simple question linked to patients’ perceptions and willingness, field studies show that adherence to ART depends on broader factors related to curers-patients interactions, culture of health workers, organization of the health system, patients’ health care itineraries, amongst other factors.

The presentation of case studies in African countries will show how economic, social, institutional and cultural dimensions interact in various ART programs to shape trends in patients’ adherence. Then, through the role of India in international access to ART as it is perceived in Africa, we will discuss some issues regarding social and cultural aspects of ART treatment in India, considered at local and international levels. We hope this conference will help define the role that anthropological research on ART may play in an applied perspective for the implementation of ART treatment, and in a theoretical perspective to document the contribution of medical anthropology to the understanding of social change under the globalization of cultural models.

Speaker

Prof. Alice Desclaux, MD, PhD, is Professor of Anthropology and director of the Research Centre "Culture, Health and Societies" at the University Paul Cézanne (Aix-Marseille 3), France. She has worked both in India and Africa in issues related to medical anthropology, anthropology of pharmaceuticals and public health. She is today one of the most renowned world specialists in the anthropology of HIV/AIDS.

Venue

Jawaharlal Nehru Conference Hall French Institute of Pondicherry 11, St. Louis Street Pondicherry 605 001

Time

04 : 30 PM

Full Lecture

Let me thank Dr Muller and IFP staff for giving me the opportunity to present past work and on-going projects.

I’d like to introduce the work that has been done by our research group, called CReCSS (Research Centre on Cultures, Health and Societies, from University of Aix-Marseille, France and IRD, UMR 145 « Sida et maladies associées ») and relate it to issues about AIDS treatment in Africa and in India. I won’t make comparisons between countries and societies that cannot be compared, but I want to use observations from Africa to set somes issues and possible approaches of social and cultural dimensions of AIDS in India that we’ll discuss together.

Why working on AIDS ?

Our research unit has been considering AIDS and AIDS treatment as a priority subject for several reasons :

• First, because there was a social demand for anthropological studies about AIDS, that were first rooted in the inability of public health to prevent HIV transmission and to control the epidemic by using only medical means. In Europe as well as in Africa, the AIDS epidemic obliged social scientists and health professionals to work together, and new approaches of anthropology were built to understand cultural and social acceptability of preventive means. The involvement of scientists in interventions was discussed more than it had been for any other disease, due, amongst other reasons, to the emergency and the fact that AIDS is still a deadly disease. The meaning of research on AIDS has been regularly questioned by activists, which led scientists to be more critical about the way they define their research questions. AIDS conferences and publications give opportunities to confront the results of social science research to the needs of PLWA, and scientists had to reconsider the use of their publications. Social sciences of AIDS might be one of the fields where scientific production is the most challenged by society –at least in countries where activists are present and health professionals are demanding. It is the case in some African countries where we have been working.

• Second, AIDS was also a challenging issue from a theoretical point of view for anthropology. Its links with sexuality, death and reproduction, blood and body fluids, cultural models for intimate experiences regarding the body and couple relationships, give AIDS a heavy symbolic content. Regarding AIDS prevention or treatment, the role of culture in shaping private behaviors amongst other forces is a relevant topic for interpretative anthropology, a trend in anthropology working on meanings.

• AIDS is also a relevant topic for analysis from a political economy point of view, a trend in anthropology that considers the articulation between culture and power through economy, social organization and politics. It is certainly a matter for the study of international relationships in the field of health under globalization –relationships that cannot be understood with ancient models such as the post-colonial division between developed and developing worlds, or the East-West division.

• At last, AIDS treatment is a subject for the trend of critical medical anthropology that considers medicine as a cultural institution. The anthropology of AIDS treatment fuels the anthropology of pharmaceuticals, a field in medical anthropology that has been developing during the last 15 years, studying social and symbolic uses, meanings and impact of medicines in various contexts from their invention to their consumption by patients. AIDS treatment can be an entry point to the study of medicalisation of health, and to the study of the renewal of cultural models for the social treatment of disease.

• Thus our research center tries to combine an anthropology of AIDS accessible to medical professionals that will help to understand key issues in treatment uses and organize care, and an anthropology of AIDS for social scientists that may give them means to understand cultural change in health systems and more generally in social systems.

Our studies on AIDS treatments were set up in the context of care programs as in Senegal, and later in the context of WHO 3x5 program as in Burkina Faso ; we have also strated a research program on neotraditional treatments of AIDS in West Africa and a research on the anthropology of clinical trials will start soon in Senegal. We hold other researches on social aspects of transmission (i.e. transmission in birthing practices in South India, HIV transmission in health care settings in Cambodia, prevention of transmission through breastfeeding in 5 countries).

Which issues about HAART (Highly Active Antiretroviral Treatment, also called ART or ARV) may be considered by anthropology ?

When the efficacy of HAART was published and discussed during the World AIDS Conference in Vancouver in 1996, we had been working on social treatment of AIDS in children in Burkina, and on testing and counselling in Africa. Soon, the head of the national AIDS program from Senegal, that wanted to set up a ART program in his country, asked us to conduct a study on adherence [1] amongst senegalese patients. His request was based on the need for a high level of adherence for HAART to be efficient –it is considered that 95% of prescribed medicines must be taken, specially during the first 4 months, for treatment to be active from a virological point of view. The issue of adherence is thus a priority for health professionals, when achievements in that field are usually low (in Europe, it is usually considered that patients take between 50 and 75% of their prescribed medicines for chronic illnesses). Other requests about adherence to ART were sent to our team in other countries such as Cameroon and Burkina Faso. The study of adherence may be the most frequent request held nowadays by health professionals towards social scientists, as it is still an issue at field level and a public health target for all AIDS treatment programs.

On such a subject, an anthropologist may expect many traps, specially since he must work on a conceptual category that is not quite meaningful in his scientific field, and when our discipline is meant to work on cultural aspects, there is always the risk of being imposed an idea of culture either too reductionist or too much totalizing when it is considered as the only explanation for adherence. Adherence itself is a concept full of meanings at various levels, and these meanings have been changing during the last six years, in Africa and beyond. These changes are partly due to shifts in policies following the publication of results of adherence studies based on quantitative studies held in the field of epidemiology, on qualitative studies in the field of social sciences, or on a combination of both approaches. I’d like now to present these evolutive meanings, along with the results of adherence studies, and the specific contribution of anthropology in that field. These observations made in Africa will, at some point, meet the Indian context.

Evolutive meanings of adherence in the « public health world »

It is possible to describe 5 periods in the way health professionals and « the public health world » considered adherence in resource-poor settings. Most studies and pilot programs considered by WHO in its reflexion about ART in resource-poor settings were held in Africa and Haiti. I shall comment each period presented here, and later on we might discuss these topics in the context of India.

1997-1998 : Adherence pre-conceived as hazardous in Africa

In 1997, just after Vancouver meeting, public health specialists and medical doctors from all over Africa met in Dakar under the International AIDS Society to define recommendations for HAART prescription in Africa. They published the first Dakar recommendations on HAAART use in Africa. We did a quick enquiry then that showed that health professionals really wanted to set up access to ART, based on the experience of developed countries and on results of a few pilot projects. But they were reluctant to use this treatment widely because they feared misuses : that medicines would appear on the informal market as they had witnessed about STD ; the sharing of treatments by patients with their families, considering the high cost of medicines ; the impact of patients’ perceptions of the etiology of AIDS, specially models based on sorcery that might hinder patients’ consideration for medicines. At that time, when Senegal created an ART pilot program in Dakar (ISAARV), our research center set up a range of quantitative and qualitative studies centered on patients, that are still on-going on a prospective basis. The first results published in 1999 showed the necessity to distinguish perceptions and practices, as many patients were asking for ART but couldn’t be fully adherent : they were adherent in there perceptions, not in practices. This difference can be conveyed in French by using the words « observance » for practices and « adhésion » for perceptions –adhesion being the adequation of patient’s perceptions about treatment to doctor’s perceptions. Unfortunately in English the word mostly used is « adherence », and confusion seems unavoidable. There, the contribution of anthropologists to medical thinking was to introduce the distinction between perceptions and practices. The confusion between these two levels may lead to consider that patients are responsible for their poor adherence because they lack willingness to treat themselves, when actually they just cannot set up material conditions to get their treatment. Other results showed that treatment share and circulation on the informal market were not confirmed in Senegal. Moreover, whatever their interpretation of the cause of their contamination, patients were eager to take HAART : saying it shortly, no cultural barrier to demand for treatment was identified.

1999-2001 : Adherence as a sign of feasibility of ART

Around 2000, the first quantitative data from Dakar and Haiti showed that a good level of adherence may be obtained in resource-poor settings. These data were limited but very much welcome : WHO organized a meeting to re-define prescription strategies, where adherence levels were interpreted as a sign of feasibility –sometimes of efficacy of treatment. The extrapolation of these results, and to some extend their « overoptimistic » interpretation, are due to their meaning in the context of a political and ideological controversy regarding ART use in resource poor settings –at that time, many public health responsibles considered that treatment should not be used since prevention appeared to be more cost-effective in resource-poor settings. But the good results obtained in Dakar led UNAIDS to consider the Senegalese ART program as a « best practice » and as an example for other African countries, as well as the project developed in Haiti by Partners in Health. The studies in Dakar showed that the reasons for poor adherence were partly the same as in developed countries, partly specific. Amongst the specific reasons, the most important were the cost of treatment and the difficulties to get medicines in health services. Adherence was over 90% amongst patients getting treatment free of cost. The National ART Program considered these results as important, and these observations, along with the decrease of prices of medicines through the provision of generics, led Senegal to set up a sponsored system. In December 2003, the President declared that ART treatment would be provided free of cost.

These data led us to consider that the main determinants of adherence were institutional factors, amongst which access is maybe the most important, but not the only one. Until then, adherence studies considered that factors were only related either to the patient, either to the drug, or to patient’s relationship with health professionals, in a social and cultural context that was underdefined. Describing « institutional factors of adherence » as a specific field, very important in resource-poor settings, is scientifically relevant. It is also a mean to clarify the debate regarding the respective weight of personal and structural factors for adherence. From a methodological point of view, it means that data about institutions (health services), criteria and modalities to get treatment, perceptions and experience of access to treatment by patients should be collected to fully understand patients’ treatment practices. We may consider that there is still a need for studies on institutional factors for adherence.

We may think that the importance of showing at international level the feasibility of ART in resource-poor settings led to a lack of analysis and publication of failures, such as in Ivory Coast where, in 2000, ART patients had to do street demonstrations and hunger strike to get their treatment when medical doctors refused to prescribe generics.

2002-2003 : Adherence supported by ART programs

In 2002, an international meeting was held in Gorée (near Dakar) to consider social aspects of HAART treatment in Africa and to update Dakar recommandations considering the results of ART pilot projects and programs that were set up in more and more African countries. The focus was on treatment economic accessibility, and an assessment of recent adherence support programs was done. These programs took various forms such as adherence clubs, home visits, therapeutic education programs, adherence counselling, or self-support groups. As more and more CBOs (community based organizations) were involved in such interventions, a new field of studies was opened for social sciences to understand underlying concepts and social roles, as well as the impact of these new forms of intervention on the health system, in a field that sometimes looks like a market of AIDS treatment.

In Dakar [2], comprehensive studies of adherence showed that besides patients included in ART programs, other patients do not benefit from treatment because they have not been pre-selected or because they stopped getting medicines and entered the « lost patients » medical category. The contribution of anthropology was then to show the limits of epidemiological or cohort studies –studies amongst programs patients- and the need to work on patients’ health care itineraries. It is a methodological challenge to work amongst excluded or « not-included » patients. But studying patients itineraries permits to analyse programs limits through delays in care, through corrupt implementation of selection criteria, and missed opportunities in follow-up. This can be done through qualitative studies building close relationships between scientist and patients. There anthropology finds one of its roles among social sciences : showing the invisible part of society, giving a voice to the ones that are not heard, and showing the actual logics beyond declared norms.

2004-2005 : Adherence produced by the health care system

During the last two years, public health approaches have rapidly changed thanks to 3x5 scaling up program from WHO that enlarges ambitions regarding ART coverage. Ameliorating access is considered as a major issue, which means that economic barriers should be removed and that articulation with Prevention of HIV Parents to Child Transmission programs, TB programs and Voluntary Counseling and Testing programs, should be reinforced. Results in Dakar regarding patients under treatment for 48 months showed a little decrease in adherence. The main reasons are voluntary interruptions of treatment and difficulties to get treatment monthly amongst persons that travel or who are engaged in social or professional activities. For the majority of patients, treatment was successful and allowed them to live a « normal » life with some adjustments, as in the case of other chronic diseases.

At the same time, we set up a study on health care itineraries of PLWA in Burkina Faso, a country where the social treatment of AIDS is organized in a different way. Though Senegal and Burkina are two countries about the same size (around 12 million inhabitants) in the same West-African cultural area, with a HIV prevalence of 4% in Burkina and between 1 and 2% in Senegal, they have contrasted AIDS treatment systems. In Senegal, national AIDS committee set up early a national ART program providing AIDS care for free, based in public health services with a limited contribution of CBOs ; all ART medicines used in the country are provided by this program. In Burkina Faso, CBOs have been the first ones to set up centers for VCT and to provide ART, along with NGOs ; each one has defined its own criteria and pricing system, and presently ART may be obtained in Ouagadougou through about 10 programs under the Ministry of health, bilateral cooperations, NGOs, CBOs, private fundations, International organizations, research programs, private delivery, workplace programs and so on. In such a complex system, patients rapidly understand the geography of accessibility of ART. Our studies show that some patients start treatment wandering before finding the most convenient program. Many patients maximize benefits by multiplying demands in various places, according to access and availability of various components of care. Others pay consequences when applying for care in a second service endangers their use of a first service because health care workers think they have been cheated. In some cases, treatment interruptions may be the result of a bad articulation between programs or of a conflict of territories between services. These factors for adherence are no more related to an institution, but to the health care system as a whole. Anthropology finds there its obligation to develop monographic approaches of a pluralistic system within biomedicine, studying the culture and relationships of various kinds of services more or less centralised, public or private, confessional or community-based. There, we must develop a critical medical anthropology approach.

2005-2006 : Adherence produced by the health system ?

Our last data in Senegal and Burkina show the importance -maybe growing- of alternative treatments of AIDS. These treatments were first developed in the 1990s, when ART was not available or accessible. In 2001, during the panafrican AIDS Conference, the media conveyed the message that African traditional medicines were developing due to the lack of ART treatment. Since that time, alternative treatments were presented no more as substitution treatments for ART, but as complementary. Some medical doctors now prescribe these treatments based on Aloe vera, spirulin, local preparations or fermented papaya, claiming their traditional origin as well as their legitimation by science. Neotraditional treatments are proposed to be taken before ART, besides ART or instead of ART. Our studies amongst patients in Burkina show that some treatments are really meaningful for patients, when they are proposed at the meeting point between medicine and religion, when they are provided by a charismatic expert, or when they offer some economic perspective if patients become themselves suppliers for other patients. In that field, studying adherence means enquiring amongst persons that are not only patients but also believers, future parents, drugs sellers, whose perceptions of medicines are the meeting point between various logics. There, conflicts of legitimacy are at the center of anthropological research. We must set our research questions in the frame of pluralistic health systems that offer a patient several possibilities to relate his disease and its treatment to a symbolic background and to socialize it. The notion of « health system » should then be understood in its anthropological definition, combining material and symbolic constructions at a meeting point between local and global cultural trends.

Evolutive approaches of adherence in anthropological studies

This review shows that empirical data and various analysis lead us to widen our approach of adherence to understand its factors. Centered on the patient during the first years, this approach had to consider his relationships with health services to tackle institutional factors of adherence that shape access and distribution. Later, as ART programs set up support interventions, adherence needed to be understood through changes in patients perceptions, practices and socialization of disease brought by these interventions. Then, it was necessary to investigate the coherence of the biomedical health system to tackle the issue of articulation between services and their consequences for « continuum of care ». Presently, it is also necessary to embed these analysis in the understanding of symbolic and social systems providing various treatments. These approaches first deliberately focused on microsocial forces, along with patients’ adherence, to provide analysis that could be relevant for intervention and didn’t pretend to wide generalizations but rather to empirical legitimacy. Besides these analysis, macroanalysis in political economy of treatment control becomes more and more relevant and enters the scope of adherence study. A few months ago, microsocial ethnographic observation witnessed the intrusion of macrosocial forces « on the field », when a demonstration was organized in several African countries, along with other places, to request from Indian parliament to withdraw his project of licence regulation.

A street demonstration in Ouagadougou, Feb. 26, 2005

Since India had to conform to WTO rules -called TRIPS- in 2005, the Parliament proposed a law on ART drugs licences. Instead of using special possibilities regarding medicines for priority diseases available under TRIPS, the Parliament adopted a restrictive law that hinders the possibility to produce new ART drugs with a generic status. As about 80% of patients under ART in Burkina take a fixed-dose combination produced by Indian companies, patients are very much worried about this law. Their concern is specially about second-line treatments, about special treatments such as pediatric presentations that still do not exist as generics, and about new treatments : for African countries, access depends on the price. Immigration of African HIV patients to Europe because they do not find their treatment home has started again, when some patients cannot take anymore first line treatments that were available under generic forms, and must shift to branded drugs. The threat is real, and adherence can be challenged if a prescribed treatment is no more accessible to patients due to this new legal context. On the last slide, a delegate of demonstators gives a petition signed by CBOs to the head of National AIDS comittee, that answers that it will be transmitted to the Indian government through diplomatic channels.

This kind of issue is obviously an issue for economists that study the complex impact of this regulation on market prices ; it is also an issue for political sciences. But this demonstration, the first of its kind in Burkina, also shows a change in meanings associated to pharmaceuticals. Patients from Burkina consider now medicines as a necessity and a right, and consider themselves as depending on the Indian Parliament to whom they address their message. There was little chance for the message to be heard, but this demonstration reveals how medicines convey now meanings related to globalization, including people’s perceptions of international forces and relationships that interact with their microlevel perceptions of pharmaceuticals as material objects. Preliminary studies show how these various meanings of medicines, shaped by different understandings and combinations of local, and international symbolic contents, make the same generic fixed-dose combination for ART a « good medicine » in Burkina Faso and « a bad medicine » in Senegal where generics are ill-considered by patients and by health professionals..

Adherence is not only an answer to the simplistic question : « how many doses do patients take ? ». It can be a window to social, economic, political and cultural foces that shape the treatment of AIDS at local and global levels. In that perspective, pathways for studies in India are many, either comparative either analytical…