International Seminar on Access to Treatment for HIV in Developing Countries  5-6 June 1998 London, UK

Reports from the five theme groups

The participants selected one of five different theme groups in order to discuss the topics raised by the speakers in more depth. The purpose of these discussions was not only to explore these subjects further but also to identify key issues and create some guiding principles for participants to consider. The aim was to find areas of consensus and to think about the guiding principles involved which could be applied to the development of any new activity, programme or policy.

These are summaries of the presentations made by the five theme groups to the plenary sessions and some of the discussion afterwards. Drawing on these discussions, a consensus statement was drafted by all participants. A list of action points, with suggestions for governments, international agencies, NGOs, health professionals and communities was also drafted.

Group 1: The relationship of treatment and drugs to the concept of care

Facilitator: John Howson, CAFOD
Rapporteur: Andrew Chetley, Healthlink Worldwide (formerly AHRTAG)

Many in the group felt that it was unfortunate that the problem of access to treatment has focused on the provision, or rather the non-provision, of anti-retroviral therapy. The value of medication as treatment should not be underestimated in that for many this is a symbolic way of demonstrating care and valuing the lives of others. However treatment and care of people living with HIV and AIDS involves much more than the provision of medication. It is also true that arrival of ARVs have also raised the issue of access to treatment into the focus of the media and international debate and has been a useful focus of activism.

Although in some part this attention could be said to be beneficial, concern was also expressed that this may have raised unrealistic expectations to provide ARV treatment without addressing the complexities. From a public health point of view to ARVs, inadequate provision and failure to address the difficulties of compliance and continuity of supplies could result in the creation of a multi-resistant virus that will have devastating consequences. There is a real possibility that naïve, albeit well-meaning attempts to supply ARVs may actually cause harm and add to the problem rather than help.

Concern was also expressed that the limited provision of ARVs could have a divisive influence within communities. Economic disparities within communities will result in only some people living with the virus accessing treatment and unless basic infrastructure problems, such as adequate laboratory back-up, procurement, distribution, storage and compliance issues are addressed, ARV treatment may lead to financial bankruptcy for those accessing treatment for which they may see no health gain. There is also a real risk from private profiteering in a context where there is limited understanding of the possible dangers of taking these therapies without the necessary medical support and back-up.

The stark reality of the inequality between the South and the North is demonstrated in a very real way when we look at who is currently accessing these new therapies. There are many people living with the virus in the developing world who want access to these treatments now. There are also others in resource poor settings who feel that the focus on ARVs deflects attention away from what they feel are their most pressing needs. To claim that the provision of ARVs to people in the developing world would in some way solve this inequality fails to recognise the deep and complex issues that affect the majority of the people living with the virus.

Care is delivered by a whole host of different actors. For the medical and nursing professions, the availability and use of drugs is often fundamental to their approach to care and forms a large part of their work. However, for other care givers who are often directly involved in the care of PLHA the provision and access to drugs is not their focus and it is often these carers who are the main support for people living with the virus in the developing world.

Developing a holistic concept of care is essential. This must be sensitive to both the culture and society in which it is located. It should contain, at least, the following aspects: psychological, spiritual, family/relationships, community, human rights, legal rights (e.g. inheritance), treatment, end of life issues, information/education, traditional medicine and understanding of how disease is understood in different cultural contexts, in order to move away from taboos and stigma. Given the above, there must be a continuum of care which reflects the local reality of resources available.

The reality that for many their main source of information is media reports needs to be acknowledged and therefore there is a great need for education and training about treatment issues in a culturally appropriate way that recognises existing limitations such as illiteracy and lack of education. Who delivers this information is crucial. The North has a responsibility to disseminate correct information about the complexities of ARVs and to also to correct misinformation about the situation in the South to enable pertinent and appropriate advocacy. This will need to take into account the different situation from continent to continent as well as from country to country within continents. This sharing of information also needs to be supported and encouraged between developing countries.

The question of who is running the debate was raised within the group but unfortunately there was little time to discus this. The group recognised that there are many actors e.g. PLHA, NGOs, the media, health workers, UN agencies, WHO, the pharmaceutical industry and treatment activists to name some of the significant players. We agreed that it would be helpful to understand and appreciate their various roles and motivations within this debate and also identify how they can work together in a positive way so as to avoid the negative effects of uncoordinated action and/or prejudice.

Although there was general agreement within the group that where the basic infrastructure is inadequate, the provision of ARVs could be extremely damaging and dangerous, a minority within the group felt that this should be no excuse or deterrent for actively working for the provision of ARVs.

Discussion questions on Group 1

Group 2: The current health care systems (government, non-profit and private sector) and how these relate to care for people with HIV/AIDS

Facilitator: Carolyn Green, Working Group Chair
Rapporteur: Monica Dolan, CAFOD

Key issues
Social security and medical insurance in different countries vary greatly, where they exist. Treatments for HIV/AIDS (particularly expensive ARVs and treatments for opportunistic infections, but even other forms of basic health care) may not be covered by public or private systems.

For example, in a Latin American model, there are often three levels of social security:

• Those people who have social security and are allowed to access different treatments available in the country.
• Those people who do not have social security and therefore cannot access treatment through the system.
• Those who have access to private insurance and can buy treatment or have it paid by private insurance.

Some doctors are refusing to provide ARV or other sorts of treatment for the following reasons:

• Budgets: In the UK, doctors with restricted funds sometimes avoid treating patients with expensive illnesses. This is true not just with HIV but includes other illnesses with high-cost new treatments, such as multiple sclerosis or Alzheimer's disease.
• Stigma: In parts of India, doctors are afraid to have HIV patients attending their clinics because they are worried that treating them might frighten off other patients.
• Cost: For example, in Ethiopia there is not enough money in the national health care system to pay for HIV treatments, since even low-cost essential drugs can be in short supply. There is a minimal health care infrastructure, and basic health care can be scarce, especially in rural areas.

Informal networks: It was noted that some HIV positive people develop 'survival systems' to mitigate marginalisation, through illegal trading, begging from friends overseas etc. Passing on ARVs is seen as a form of activism for some people: at international conferences, it often happens that people who have access to treatment in their own country pass medication on to others who have no access.

Screening: Other access methods involve screening to select those who get ARV treatment when funds are insufficient to supply everyone who needs it. In Colombia, preference is given to those who have been recently diagnosed on the grounds that they are likely to get the greatest health benefit from it.

Advocacy: Lobbying for changes in law is important because if the legal right to access is recognised, it enables people to demand treatment. However, even if law is there, people may be denied treatment due to the economic situation, lack of health infrastructure or a variety of other reasons.

Cost effectiveness studies: Can they help to prove the case for treatment? It depends on the situation. So far, some of these studies have found that if the health care system is good and functions well, ARV and other forms of HIV treatment are cheaper than the extra costs of hospitalisation which would arise without treatment. However, if the health care system in question has little money invested in it and is in general of poor quality, then treatment for HIV will be more expensive because it is an additional cost to the system's currently low resource level. Not only are the additional costs from drugs but also from their infrastructure (laboratories, training of doctors and nurses, medical supplies) which may not already be in place.

Criminalisation/decriminalisation of drug use is an important issue. In countries such as Belarus, where recreational drug use is not criminalised, it is possible to work openly and easily on harm reduction for injecting drug users. Criminalisation means that drug use goes "underground". In addition, prison populations have high drug use problems. Prisoners are generally not attended to in discussions about either treatment or prevention (no condoms are available, etc.).

Blood screening availability in many parts of the world and for particular sectors of population (e.g. prisoners) is still uneven and patchy. India was mentioned as a place where this is a problem, especially as the government is transferring responsibility for health care to the private sector. The window period also still presents a problem. The delegates wanted a solution to this, especially in Africa.

Principles for future action:

• Education on the many issues involved around treatment and prevention of HIV is vital for all concerned, including donors, government officials, lawyers, PLHA and health workers.
• Government and private sector, including NGOs and PLHA support groups, must act in a complementary way in health care service delivery and avoid working in isolation or against each other.
• A legal framework is necessary to guarantee the right of access to treatment for HIV.
• There must be recognition of minimum standards of care for HIV which all health workers, governments, etc. should follow. This recognition will allow PLHA to press for treatments as a recognised right.
• There should be clear responsibility for delivery of health care at the government level. There should also be clear responsibility at government level for relationships with NGOs and for relationships with donors, so that bodies concerned with health delivery know exactly who to relate to.
• The relationship between aid and health should always be recognised by donors and governments. Concept of 'good government' as a criterion for assistance by donors needs to be more closely examined with regard to health and access to treatment, since populations in badly governed countries are probably at even more risk from HIV and associated illnesses.
• The consequences of structural adjustment programmes must be understood better by the international community. It is unacceptable to allow worsening health alongside an apparently improving economy. The effects of  health care system reforms need also to be understood better by international community.
• Special groups (such as women, prisoners, children, etc.) must be fully included when formulating policy or taking action.
• Co-operation between countries is vital to improve access to treatment since HIV respects no borders, successful approaches in one country or area may be helpful in another country, and it may be possible to share resources across borders.
• In the long term, development of a vaccine will be more beneficial than the supply of treatments.
• Palliative care should have a greater priority in AIDS treatment. This requires the decriminalisation of oral morphine for medical use and the education of doctors and nurses to use it where appropriate.

Group 3: The differences and similarities between community development principles and current treatment activism strategies

Facilitator: Mick Matthews, Consortium Working Group
Rapporteur: Mike Bailey, International HIV/AIDS Alliance

Key Issues

The group identified some key elements of activism and of community development.

1. Activism

Activism uses different approaches such as influencing consensus or challenging through confrontation. The basic strategy is to exploit windows of opportunity presented by specific issues e.g. Access to ARVs, to effect changes in broader areas. The motivation is a desire for political and social change, challenging injustice and a sense of collectivism. The basic premise of HIV treatment activism is to advocate for best treatment to be available for all, to build capacity to use treatments effectively, to increase access to information on available treatment, prices, policy changes etc. and to challenge the influence of the Pharmaceutical industry in setting agendas.

2. Community Development

Community Development focuses on developing infrastructure to manage treatments (this would include skills building, equipment supply, policy development etc.) , facilitating appropriate partnerships and community involvement, facilitating the transfer of technology for drug manufacture and trying to achieve equal power relationships and skills.

The approach is to lobby existing structures, such as UNAIDS, to campaign and lobby on international policy and to develop and encourage collaboration between international development NGOs and indigenous NGOs.

Some of the key elements of this approach are:

• Sustainability
• Capacity building
• Skill sharing
• External and indigenous engagement

A simple illustration would be:

• Activism - Access to ARVs for all PLHA.
• Community Development - Access to Essential Drugs, which may include ARVs, for the community.

• Both positions ultimately want the same thing.
• Both positions want to increase access to information.
• Both are cautious about the influence of the pharmaceutical industry setting agendas and priorities.

The Next Step
The group agreed a consensus statement:

"It is unacceptable for anyone living with HIV anywhere in the world to suffer or die for want of access to treatment and care which is available elsewhere."

It was acknowledged that this represents an 'ideal' but any response to access to treatment will evolve out of a perception of this broad vision.

The group identified the need for a framework for taking the 'vision' forward. This should be done on three levels:

1. Political
This must include discussions and strategies for identifying and accessing appropriate levels of funding at all levels. There must also be efforts to facilitate political engagement.
 
2. Intermediate
The framework here must strengthen and develop the linking function of UNAIDS and other community organisations. The aim would be to identify needs and appropriate mechanisms for effective responses, to improve the quality and accuracy of the information provided to Governments and to facilitate more effective interaction between all relevant parties.
 
3. Community
Community level must include the networking of people who work at community and/or field level. It will have an emphasis on sustainability, develop the monitoring and observation function (a potential role for community based groups at each level) and will also be responsive to needs and mechanisms for addressing those needs.

In the plenary session, it was strongly felt that a dialogue based on common desire to collaborate must continue between development NGOs and HIV treatment activists, to develop and eventually implement the process conceptualized by the group.

The final discussion also touched briefly on the issue that:

• Drug availability and the strengthening of infrastructure are inextricably linked and should be viewed as one package.
• Societal perceptions are formed and informed by events over which activists and development NGOs have yet to exert any real influence.

Group 4: Learning from the experience of other diseases and essential drugs strategies

Facilitator: Philippa Saunders, Essential Drugs Project
Rapporteur: Jane Cole, Rapporteur

Key issues

• Access to treatment requires commitment to the essential drugs concept. It implies efficient management of drug supply to ensure consistent supplies and rational use of good quality drugs.
• Incorrect use of drugs and inability to adhere to treatment regimens are major problems.
• Lessons can be learned about the use of antiretrovirals from experience in treating cancer.
• Prescribers require specialised education, as do families and communities caring for people living with HIV and AIDS.
• Among the ethical issues are: equity (between countries and between economic groups within countries); profiteering by pharmaceutical companies; long-term access to treatment; and the conduct of trials.
• The donation of drugs in HIV and AIDS is problematic, especially of antiretrovirals. The problems include: irrational use, development of resistance, the circulation of poor quality products, and lack of adequate medical infrastructures.
• There needs to be a mechanism for assessing the place of ARVs in essential drugs policies: a basic package of care should be in place before expensive new products are made available.
• Treatment of HIV and AIDS must be integrated as a standard component of public health and primary health care.
• Access and good quality treatment in both the public and the private sectors must be managed within the national health and drug policies. It should be remembered that the cost of treatment can involve individuals and families in bankruptcy.
• Quality of care implies adequate medical infrastructures, including training of personnel and support for care in the community. It may be that HIV/AIDS treatment kits have a place.

• Sustainable and comprehensive care (treating the patient and not the virus).
• Freedom from pain, including access to oral morphine under controlled conditions.
• National policy guidelines to ensure equity and quality of care.
• Integration of treatment within health and drugs policy, the medical context and the health care system - AIDS is a disease which has political and social implications which compartmentalise it and separate it from the treatment of other diseases.
• Compliance with national drugs policies by NGOs and the private sector. NGOs should formulate their own drugs policies.
• Compliance with WHO Drug Donation Guidelines, especially emphasising consultation between donor and recipient organisations.
• Support for communities in home care skills and palliative, end-of-life care.
• Priority given to effective and accessible treatments. New, expensive drugs should not compromise this.

Group 5: The relationship of treatment and drugs to the links between care and prevention and public health issues

Facilitator: Kathryn Carovano, International HIV/AIDS Alliance
Rapporteur: Sian Long, Healthlink Worldwide (formerly AHRTAG)

Key Issues
The group focused its initial discussions on developing definitions of care, treatment, drugs to provide a base for the subsequent discussion. The following definitions emerged:

Care
Care is provided to individuals, families and communities to improve quality of life; the provision of drugs is only one part of this. It is a comprehensive package that includes:

• support
• psycho-social care
• treatment

• Preventive treatment (STD treatment, TB prophylaxis, ARVs to reduce vertical and sexual transmission).
• Post-exposure prophylaxis.
• HIV-related disease.
• Non-HIV-related needs (e.g. antenatal and postnatal care) of people living with HIV.

Drugs
In the context of this workshop where considerable discussion focused on access to anti-retrovirals, the groups felt it important to note that when discussing access to drugs we need to think about a much broader spectrum, not just ARVs.

Important areas to consider regarding access in the context of HIV include drugs for:

• prevention
• primary care (for OIs etc.)
• palliative care (e.g. aspirin)
• ARVs
• supplies (e.g. gloves, sterile syringes)

• There is a critical need to ensure the protection of the rights of women with HIV, especially those who are pregnant.
• There is lack of attention to HIV positive women's ante and post natal care needs. These must be part of any programme developed to prevent vertical transmission through the use of ARVs.
• Testing pregnant women to identify those with HIV in order to intervene to prevent vertical transmission does not appear to be a cost effective strategy, and some feel it will be a failure. This needs to be critically analysed.
• Current recommendations on the appropriateness of breast feeding by women with HIV are based on inadequate data. There is critical need to study reality of reducing risk from breast-feeding.
• Before considering interruption of vertical transmission, communities should first provide:
* comprehensive treatment of STDs
* comprehensive pre-natal care
* prevention programmes for pregnant women
* ante-natal care, safe childbirth and post-natal care are all essential for mothers
* treatment for opportunistic infections in pregnant women
* safe blood transfusion

Another concern raised in this group was that the discussion of access to ARV's seems often to be based on the myth that they are not available in many countries. The reality is that ARVs exist and are being used in most countries, and they are often being misused. The appropriate use of ARVs requires a sophisticated health care system and up-to-date information. PLHA need access to accurate, up-to-date information in order to be able to make informed treatment decisions. A number of different models are needed for different settings, but emphasis should be placed on maintaining/strengthening basic primary health care services, through hospitals and other systems.

Another issue of concern was that of equity, and inequity, within and between communities. The example of Zambia was raised, where health sector reform -- spurred by debt-inspired structural adjustment programmes -- has involved the decentralisation of services. As a result, local purchase of drugs has meant poor areas don't get funds while rich ones do, thus increasing inequity.

General Principles

With respect to access to treatment and care services in a given setting, the group agreed that:

Whatever is available to others must be available to people with HIV. The central point of this was to acknowledge that people with HIV often face discrimination and stigmatisation and, consequently, do not even have access to those services that are generally available to others in the same community or country.

With regard to making new treatments or services available to people living with HIV in a specific setting, the group agreed the principle that: What is not available to others in the same community needs to be carefully considered. This requires decisions about prioritisation in the context of public health.

All decisions on access should be based on the principle of equitable access. Many programmes and policies are currently increasing inequality within and between countries and sectors of society.

Treatment should not be divorced from prevention, care and support.

Interventions should not cause harm to others in a society. Attention must be paid to protecting the human rights of those living with virus and to the public health needs of those uninfected.

Human rights should be used as basis for public health decisions about access to care, treatment and support. But care must also be taken as human rights decisions can lead to increased inequality in access (e.g. prisoners in South Africa have access to treatment not available to others outside the prison system).

Given socio-economic, cultural and other differences, it was agreed that it is not appropriate to think of a single model for care of people with HIV. The group agreed that principle that: A number of different models are needed for different settings.

Going to hospital carries significant risk of infection for people with HIV. It was agreed that programmes should aim to: Improve home care to avoid HIV positive people going to hospitals and picking up infections.

Many of the basic care needs of people with HIV in resource developing countries are not being met due to inadequate health care services. The group agreed the principle that: Emphasis should be on maintaining/strengthening basic primary health care services.

The important roles being played by NGOs/CBOs in the provision of care and support services must be recognised. However, these roles also need more discussion (i.e. are NGOs/CBOs being inappropriately used to fill gaps in public health services, without adequate technical support?), and their limitations and needs for support acknowledged and addressed.

The involvement of PLHA should be supported in the development and implementation of both prevention and care policies and programmes.

There is a need to focus on different requirements (for information etc.) of people who know they have HIV, those who know they don't and the majority who do not know their status and may think they could have HIV.

Discussion questions for Group 5