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Improving Access - Section 3: Key issues for improving access to HIV/AIDS-related treatment
   Last updated: 28.06.02
Introduction: HIV/AIDS-related treatment in context
HIV/AIDS-related treatment must always be relevant to the context in which it is planned, delivered or evaluated.

Each individual person with HIV is living within several layers of context. The most immediate context is that of his or her family, and their ability (or not) to provide care, support and treatment. They, in turn, live in communities that may or may not have available health and social support services, which also depend on national priorities and resources, all within a global setting which may or may not see treatment for people with HIV as a priority.

One example of how each level affects the others can be seen with regard to food supplies and TB treatment programmes. According to a recent United States Agency for International Development (USAID) review on HIV/AIDS and nutrition, wasting and increased nutritional needs were identified as characteristic of HIV disease and of TB, particularly with regard to protein foods and certain vitamins. Many people are co-infected with both diseases, and food supplies are therefore a major priority for them. At the same time, most of those infected are among the poorest populations, whose immunities are already compromised by lack of food supplies, sanitation and clean water.

Further, food and water supplies are not just matters of individual or local community concern. They are key elements of health and social welfare programmes and a matter of international concern when countries are unable to produce sufficient food or water supplies for their populations. In the presence of HIV and TB, adequate food supplies are both preventative in supporting healthy immune systems and curative in that they are essential for drug treatment to be effective and to prevent re-infection. Medical treatment of these diseases risks failure if people are hungry and if they cannot get the right nutrients.

The different levels of context are all affected by a variety of health, social, economic and political factors, and interact on all the different levels. Providing technical, financial and human resources for improved access to safe and effective HIV/AIDSrelated treatment requires an understanding of these differing factors and layers of context. Assessment of context is therefore as important as assessment of disease prevalence and morbidity and mortality patterns for the planning and implementation of treatment.

What is available or accessible to people has a direct effect on what kind of treatment people with HIV hope for or expect from NGOs, CBOs or PLHA groups. Generally, it seems that where safe and effective treatment from government or other health providers is lacking, people turn to the NGOs, CBOs or PLHA groups for help, with expectations that may or may not be possible to meet. Faced with potentially overwhelming demand, NGOs, CBOs, PLHA groups and those who support them must therefore pay careful attention to assessing and involving the various sectors that form the context of treatment activities in order to achieve effective planning and service delivery. As one member of a CBO participating in the Alliance/Horizons diagnostic study said, “we know that those who come to us in the sick stage of their illness come in search of medicines. They hope to find treatment and be immediately cured.”

3.1 Availability and accessibility of HIV/AIDS-related treatment
In order for it to be used safely and effectively, HIV/AIDS-related treatment should be both available and accessible to those who need it.

A treatment is available if the resources needed for the treatment can be found in the community. Availability of treatment can be limited by many different factors. For example, participants at the workshop on involving people with HIV in access to HIV/AIDS-related treatment in the Philippines reported that treatment is only available in the capital, Manila, which leads many people with HIV to move from their home areas, leaving behind their families and informal support networks. Meanwhile, the Alliance assessment on HIV/AIDS-related treatment in Zambia found that many essential drugs were regularly unavailable due to inadequate and interrupted drug supplies. A similar assessment in Côte d’Ivoire showed that the full continuum of care, including treatment, is not available in any one place. For example, there is no one site where a person with HIV can obtain and be monitored for treatment with ARVs as well as having common infections diagnosed and treated. The assessment also showed that generic drugs were not widely available, and as a result prescribers were not always familiar with their optimal use.

At the workshop on access to HIV/AIDS-related treatment in Cambodia, participants drew a map to show the availability of HIV/AIDS-related treatment in the capital, Phnom Penh. It shows that treatment is available in a number of health institutions and pharmacies, and that traditional healers and home care teams are important sources of treatment.

For people to use treatment it must not only be available; the treatment must also be accessible. This means that it should be easy for people to obtain and use the treatment safely and effectively. Accessibility of treatment is also limited by a range of factors, not least of all cost. The Alliance’s recent consultation on access to ARVs in Zambia showed that they had been available through the private sector since 1992, but that triple therapy at its current cost was still too expensive – well out of reach for most Zambians. Meanwhile, participants at the workshop in the Philippines reported that another factor that limited access to treatment was the discriminatory attitudes and behaviour of health workers.

In practice, NGOs, CBOs and people with HIV in developing countries find that there are multiple, interconnected barriers to access to HIV/AIDS-related treatment. These operate at all levels, from the individual to the community and global, and can be divided into four main groups:
  • financial – such as families having to prioritise money for food rather than drugs

  • organisational – such as lack of skilled staff within NGOs or CBOs to administer drugs

  • physical – such as lack of transport for people with HIV to get to sources of drugs

  • social – such as treatment providers discriminating against people with HIV by refusing treatment or offering sub-standard treatment.


In practice, the barriers to access to HIV/AIDS-related treatment can seem simple, and yet remain difficult to overcome. For example, the Alliance’s assessment of HIV/AIDS-related treatment in Zambia showed that lack of food is the most common and urgent barrier because people are simply hungry and cannot afford the most basic diet. This means that money cannot be diverted to health care needs, and that even when people can afford drugs the outcomes may be poor because of their undernourishment. The Alliance’s assessment of HIV/AIDS-related treatment in Côte d’Ivoire found that poor patients are often given sub-standard treatment because they cannot afford full courses of drugs, while in Burkina Faso people in an advanced stage of illness are turned away from hospitals because it is perceived that nothing can be done for them.

The Alliance’s assessment of HIV/AIDS-related treatment in India found that secrecy and ostracism were major barriers to safe and effective treatment because, for example, doctors refused to treat people with HIV or gave them sub-standard treatment. There, the lack of access to ARVs meant that HIV/AIDS was seen as a lifethreatening disease rather than a non life-threatening chronic illness. One participant commented, “everything would change if we had them [ARVs] – we ask for these drugs for our children, not for ourselves.”

Photo (not shown here): An example of the Phnom Penh group’s map showing where HIV/AIDS-related treatment is available.

Examples: Barriers to treatment
Barriers to HIV/AIDS-related treatment identified by participants at a workshop on access to HIV/AIDS-related treatment in India.

Financial barriers
  • High drug prices

  • Treatment services unaffordable

  • Lack of investment in health care systems


Organisational barriers
  • Lack of trained personnel

  • Refusal to treat PLHA

  • Irregular supply of drugs

  • No monitoring systems

  • No testing

  • No counselling


Physical barriers
  • Distance to services

  • People too sick to travel to services

  • Treatments not available in the right place


Social barriers
  • Stigma and fear

  • Lack of respect for dignity of PLHA

  • Other basic needs get preference

  • Lack of decisionmaking power of women and children


In some instances, the number of barriers to HIV/AIDS treatment can seem overwhelming. However, Alliance partners have found that something can be done about many of them, and that even small successes can make an immense difference. For example, Y.R. Gaitonde (YRG) Care in Chennai, India, found that obtaining some of its drugs from overseas organisations meant that it could reduce its charges to clients, and that linking with TB research and treatment centres could improve people with HIV’s access to TB drugs. Meanwhile, the evaluation of the Ministry of Health/NGO Home Care Programme in Cambodia showed that advice and information from home care teams had helped 98 per cent of people with HIV and their families to reduce their expenditure on drugs and traditional remedies by US$0.80 – 1.30 per week. Participants at the workshop on access to HIV/AIDSrelated treatment in the Philippines drew a diagram showing the various opportunities to overcome financial barriers to access to HIV/AIDS-related treatment.

Diagram from the workshop in the Philippines

This shows ways in which financial barriers can be tackled, including: Fundraising from NGOs, PHA and civil/private groups; Oppose mandatory testing for overseas foreign workers (OFW) – [i.e. so that people with HIV can go overseas to earn money]; Linking with international and national organisations focused on access to treatment; Capacity building for income generation; Training of trainers; Greater involvement of PLHA in NGOs; Using the National AIDS Law; Accessing sustainable livelihood programmes and loans for OFW; Ensuring sustainable stable employment; Accessing the Global Fund to fight AIDS, TB and Malaria through the country coordinating mechanisms; Accessing local funds, e.g. Local Government Unit.

Viewpoints

"This country is very poor. The majority of people with HIV have died because of their economic situation and because of a lack of medicines. If we don’t find help and medicines we do not stand a chance. It’s not a question of taking one pill a month – we need proper, long-term medication." Participant in the Horizons diagnostic study on the involvement of PLHA, Ecuador.

"In general, anything a person needs is always available from somewhere, but at a price, and access depends largely on ability and willingness to pay." Alliance needs assessment on access to HIV/AIDS-related treatment, India.

"There is always a solution – we have to look for opportunities for ourselves to overcome these barriers." Participant at the workshop on involving people with HIV in improving access to HIV/AIDS-related treatment, the Philippines

"Barriers such as lack of food, clean water, adequately trained health workers and infrastructure, and the stigma and discrimination which surrounds HIV/AIDS, all hinder poor people’s access to care and treatment. While working towards solving these problems, the priority must be to prolong life and improve its quality by whatever means are immediately available, accessible, affordable and safe." Alliance policy statement on access to HIV/AIDS-related treatment

3.2 Drugs and other commodities for treatment and prevention
Material supplies for treatment must be available, accessible and better managed at all levels. These supplies include:
  • medicines

  • condoms and other materials for HIV prevention

  • syringes, dressings and other materials for treatment

  • reagents, diagnostics and laboratory materials for diagnosis and monitoring.


Drugs for TB treatment have proved a clear example of how much can be achieved when drug availability, accessibility and management are successful. In Nepal, for instance, the number of deaths among TB patients managed under the WHO DOTS strategy reduced by over 40 per cent between 1994 and 1999. Such reductions provide further benefits in reduced morbidity and improved prevention. Unfortunately, there are many instances where drug supply failures have contributed to the increasing spread of TB instead of its reduction. Often NGOs working in HIV/AIDS-related treatment find that they must add TB medicines to their list of treatments when government TB programmes cannot supply them.

The essential drugs concept must be central to planning for HIV/AIDS-related treatment. This concept arose directly from experiences of trying to ensure treatment availability for the main health problems faced by the majority of people in the world. An Essential Drugs List (EDL) is a key element, but it has grown beyond its initial aim to simplify prescribing and procurement into becoming a natural consequence of a vital first step: ensuring accurate diagnosis and choosing evidence-based, costeffective treatment strategies. These strategies should be based on standard treatment guidelines and reliable, objective treatment information sources. The lists of essential drugs and other commodities can be drawn from these sources into what is now more correctly referred to as a list of essential medicines and other supplies.

Which drugs for which illness?

Resource:
  • Treatment guidelines


Which drugs should we use?

Resource:
  • Essential Drugs list


How should we use the drugs?

Resource:
  • Prescribing manual


Reference: Mobilising NGOs, CBOs and PLHA Groups for Improving Access to HIV/AIDSRelated Treatment – A Handbook of Information, Tools and other Resources.

More and more countries use this approach for public health care, as do NGOs that act as significant health providers in some of the poorest countries. Thus, treatment guidelines, drug formularies, essential medicines lists and market information (knowing what is available, what it costs and how to get it) can provide a solid framework for action: a basis for setting up reliable and sustainable supply systems, appropriate training/skills, and patient-centred treatment services.

NGOs, CBOs and PLHA groups have a significant role to play in the development of national treatment guidelines and lists of essential medicines and commodities. Many of them have done this through first developing their own guidelines and lists for the work they are involved in. For example, in 2000 the Alliance supported YRG Care in Chennai, India, to develop and publish HIV/AIDSrelated treatment guidelines. Home care programmes in several countries, including Cambodia, India and Zambia, have worked out the basic medical supply needs for their context and have standardised them in order to ensure that:
  • their clients receive the best available care and support

  • the carers understand the medicines they are using

  • the medicines and commodities are used and managed in the most costeffective ways possible.


The lessons learned by NGOs, CBOs and PLHA groups should be communicated to national bodies and shared with their peers. Their experiences should, and can, directly influence the development of national policies and strategies for improving treatment and care for people with HIV.

The realities of delivering treatment in resource-poor settings mean that many NGOs, CBOs and PLHA groups have very limited resources for purchasing medicines, even when treatment guidelines and essential medicines lists have been developed. The use of off-patent, good quality generic drugs – generally available at lower costs than the original branded ones – is a priority because of cost, but also because generic prescribing simplifies treatment and reduces confusion over drug names.

Many NGOs also find themselves relying on drug donations from well-wishers. As one NGO worker said, “If we do not get donations, there may be no availability of drugs.” However, the many disadvantages of drug donations seem to be well understood, including the unsustainability of supplies, lack of drug information and receiving drugs that are close to expiry dates or inappropriate to local needs. Support for NGO, CBO and PLHA group-based treatment activities must adhere to WHO recommendations for managing donations and be based on the stated needs of the recipients. Supplying or accepting donations of drugs and commodities on the basis of being ‘grateful for anything we can get’ is not a sound strategy for safe and effective HIV/AIDS-related treatment.

Photo: A serious headache for NGOs, CBOs and PLHA groups – unwanted and expired drugs.

Viewpoints

"If we do not get drug donations, there may be no availability of drugs. If we have them, we can use our money to buy other things."

"Sometimes we get donations that we don’t need – maybe they are already available in the country or they are not on the essential drugs list and we don’t know how to use them."

Comments on donations from participants in the Cambodian workshop on access to HIV/AIDS-related treatment, hosted by KHANA and the Alliance.

Support for HIV/AIDS-related treatment activities must include improving access to pharmaceutical skills. NGOs and CBOs involved in HIV/AIDS-related treatment often come from a background of community support and education for prevention. Many, at least initially, lack the basic skills of pharmacy for setting up and sustaining provision of medicines. These skills include:
  • logistic, financial and negotiating skills for obtaining and distributing medical supplies to the point of use

  • skills for dispensing – preparation and labelling of medicines for use, instructing patients and carers about drug use, encouraging and supporting adherence to treatment regimes

  • skills in sourcing, evaluating and using medicines information to help patients and prescribers make the best use of drugs and manage problems such as sideeffects or resistance to anti-infective drugs


The development of HIV/AIDS-related treatment services must therefore include provision for improving access to such skills, preferably through the use of trained pharmacists, pharmacy assistants or pharmacy technologists. If these are not available as staff for the service, the advice and guidance of volunteer pharmacists must be used whenever possible to ensure safe and effective practice in providing medicines. Examples of good practice in this respect can be found in countries such as Kenya and Zambia, where church-based organisations like the Mission for Essential Drugs and Supplies of Kenya and the Churches Health Association of Zambia, who have been providing general health services for many years, have pharmaceutical training programmes that have been expanded to cover HIV/AIDS-related treatment.

At the workshop on access to HIV/AIDS-related treatment in Cambodia, participants drew a timeline (see below) and identified a range of steps involved in managing supplies of HIV/AIDS-related drugs effectively. The discussion of the timeline highlighted that the cycle (and all its steps) for managing drugs and other supplies for treatment must be carried out without disruption and in the right order to prevent gaps in treatment that might result in causing physical and psychological harm to people with HIV.

Timeline from the workshop in Cambodia

1. Analysis
  • What drugs do we need?

  • Do we know how to use these drugs?

  • What quantity of each drug do we need?

  • Quality

  • Cost

  • Expiry date


2. Supply
  • Delivery time

  • Permission letter for buying drugs

  • Regular supply

  • Emergency supply (safety stock)

  • Control on how to use drugs

  • Quantity of use and duration of supply

  • Dispensing drugs to patients


3. Re-order
  • Time to re-order

  • Re-check the quantity (checking stock)

  • Get permission to re-order


3.3 Advocacy: working towards change
Advocacy to improve access to HIV/AIDS-related treatment (a process of action that entails working towards changes in attitudes, policies and practices) needs clear strategies to bring about change on several different levels, including the community, national and global levels. Advocacy for improving access to HIV/AIDS-related treatment is essential for addressing the many interlinked barriers preventing people with HIV from accessing the treatment they need.

Advocacy at each level can effect change at the other levels. Recent developments in the reduction of prices of ARVs have demonstrated how advocacy to lower drug prices at the global level with international pharmaceutical companies can effect change at several other levels:
  • at the national level, whereby more governments from developing countries may consider making ARVs available through their public health care systems

  • at the individual level, whereby more people with HIV may be able to afford ARVs.


Action for change should be taken at each level to improve access to HIV/AIDS-related treatment.

  • At the individual and community levels, accompanying people with HIV to the hospital or clinic to ensure that they receive treatment is a way of advocating for improved treatment access. Similarly, influencing local pharmacists to stock drugs that people with HIV need is another way of advocating for improved access to treatment. In Zambia, at the workshop on improving access to HIV/AIDS-related treatment, participants agreed that sensitising community members about their right to health is also a way of advocating for improved access to treatment. Participants also suggested informal education with community members as an effective method of advocating for change. For example, when some local chiefs were targeted with informal education about HIV/AIDS prevention, they put rules into place in their communities forbidding men to marry under-age girls.


  • At the health system and national levels, NGOs, CBOs and PLHA groups can participate in the development of standard treatment guidelines for HIV/AIDS and influence the government to improve the supply of HIV/AIDS-related drugs in hospitals and clinics in order to improve treatment access for people with HIV. At the workshop in Zambia, participants said that having clear national guidelines and policies for treatment that were easily accessible was an important national advocacy goal.


  • At the global level, lobbying pharmaceutical companies to reduce the price of HIV/AIDS-related drugs and encouraging international drug suppliers to make HIV/AIDS-related drugs widely available at low cost are ways of advocating for improved access to treatment.


At the workshop on improving access to HIV/AIDS-related treatment in India, participants discussed a number of advocacy strategies for improving access to treatment for people with HIV.

Community level:
  • Advocate for better collaboration between PLHA, NGOs and government on access to HIV/AIDSrelated treatment

  • Advocate for more information about issues relating to treatment and access to HIV/AIDS-related treatment


National level:
  • Advocate for an improved supply of free drugs from the government

  • Advocate for more involvement of people with HIV in work on treatment issues


Global level:
  • Advocate on international issues such as compulsory licensing and parallel importing of HIV/AIDS-related drugs

  • Advocate for lower international prices for HIV/AIDS-related drugs


Participants at the same workshop emphasised that the voice of people with HIV must be central to any advocacy for access to HIV/AIDS-related treatment and it must be heard at all levels for the advocacy to be meaningful, authentic and effective. Mechanisms and supportive environments for the greater and more meaningful involvement of people with HIV in treatment advocacy must be developed.

Viewpoints

"We must advocate for more visibility of people with HIV and involvement of people with HIV in treatment access issues." NGO participant at the workshop on improving access to HIV/AIDS-related treatment, hosted by the India HIV/AIDS Alliance.

"Care and treatment is my right. I shouldn’t have to demand it. It should be available to me without such struggle." Geeta Venugopal, Indian Network of Positive People, at the workshop on improving access to HIV/AIDS-related treatment, hosted by the India HIV/AIDS Alliance.

Additionally, participants at the Philippines workshop on involving people with HIV to improve access to HIV/AIDS-related treatment, hosted by PHANSuP and the Alliance, agreed that advocacy for improving access to treatment at the various levels must be well co-ordinated and that everyone, especially people with HIV, must speak with one voice and articulate clear, simple, strong messages.

Source: Improving access to HIV/AIDS-related treatment
This is an extract from Improving access to HIV/AIDS-related treatment, a report published by the International HIV/AIDS Alliance in June 2002.

To view the whole report follow this link.

To download the full report, complete with graphics, in pdf format (which requires Adobe Acrobat software to read it) follow this link (file size 725kb).