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Access chapter 1: First questions to ask
   Last updated: 19.07.02
Summary
Chapter 1 of this handbook helps groups to develop an understanding about:

  • Care, support and treatment - including how they are defined, how they are connected, and where they can be provided.

  • The links between treatment and prevention and how they can combine to reduce the impact of HIV.

  • Barriers to access to treatment and how they prevent people with HIV from getting effective treatment.

  • How access to treatment for people with HIV relates to:

- The HIV epidemic and its context.
- Other aspects of health care.
- Social and economic conditions.

1.1.A. Care and support
Care and support is based on a concern for the well being of others and ourselves. People directly affected by HIV/AIDS need care. People with HIV, families and communities are involved in care and support. They all need support to face the challenges of illness and meet the needs involved. The aim of HIV/AIDS care and support is to improve the quality of life of people with HIV, their families and communities. Care and support is also important because it helps efforts to prevent the further spread of HIV/AIDS.

Comprehensive care, an important part of care and support, is about responding to the needs of a person with HIV in a holistic (or "whole") way. It involves a variety of information, resources and services to address a range of needs - not just medical needs.

Comprehensive care includes the following important basics:

  • diagnosis

  • treatment

  • referral & follow up

  • nursing care

  • counselling

  • support to meet psychological, spiritual, economic, social and legal needs


Each person with HIV has different needs, depending on the stage of illness and circumstances. For example, a person with HIV who is not ill will have different needs and will require different care and support than a person with HIV who is very ill and bedridden most of the time.

Comprehensive care for a person with HIV should happen within a continuum of care. This means responding to a range of care and support needs in different places – such as hospital, clinic, community and home - over the course of the person’s illness. Responding to these needs also requires a co-ordinated response from people with a variety of complementary skills – e.g.: counsellors, nurses, doctors, community health workers, people with HIV, pharmacists etc. It is vital that people and places involved in care and support work together to have an efficient flow of information, resources and services between them – to ensure a continuum of quality care and support.

Case study: Mr Banda
Mr Banda lives in a town in Zambia. He went to the hospital for an HIV test because he was losing weight and coughing. Due to his cough, the doctor also checked him for TB. The results of both tests were positive. The doctor started Mr Banda on TB treatment while he was in hospital. But, when Mr Banda was coughing less, he was sent home and referred to the Home Based Care Team of a local church. The team came to Mr Banda’s house to support him to take his drugs regularly, but he shouted at them not to come back. The Team persuaded Mr Banda to see the Medical Officer who listened carefully and realised that Mr Banda was afraid that his neighbours would see the Team visiting him, realise he had TB, and reject him. So, the Team helped Mr Banda to talk to a trust-worthy relative – who learned how to help Mr Banda take his drugs every day and go for check-ups at the hospital. Mr Banda’s TB was controlled and he started to feel much happier.

Activity: Care and support
Aim: To identify the elements involved in comprehensive care and support for people with HIV.

Instructions:
1. Explain the aim of the activity.
2. Present participants with a definition of comprehensive care and support [see previous page].
3. Divide participants into small groups of 4-6 people.
4. Ask each group to brainstorm - based upon their own experiences - the different elements involved in comprehensive care and support for people with HIV. Ask them to write them on a piece of flipchart paper.
5. Bring everybody back together and ask the groups to share their results. Encourage the participants to ask each other questions and to make comments.
6. Facilitate a group discussion about what has been learned from the activity, based upon questions such as:
  • Why is it important that care and support for people with HIV is "comprehensive"?

  • Are any of the elements of care and support more important than the others? Why?


Facilitators’ notes:
  • Encourage participants to think about the whole range of needs of people with HIV, rather than just their medical symptoms.

  • Ensure that participants include the "everyday" elements of care and support for people who are healthy and living with HIV, as well as for those who are ill. Examples include nutrition and a loving environment.


Example: Zambia
At a skills building workshop, NGO/CBO participants shared their experiences about providing comprehensive care and support for people with HIV. They decided that the key elements included:

Personal and family hygiene
Counselling
Spiritual support
Nursing care
Environmental hygiene
Clothing
Education on diet
Blankets
Food
Relief of symptoms
Income generating activities
Treatment
Employment
Medicines
Sharing experiences
School needs
Transport
Singing

Afterwards, the facilitator led a group discussion about what had been learned from the activity. For example, participants agreed that effective care and support should involve responding to a variety of different elements, including physical, spiritual, psychosocial and material.

(Reference: Adapted from a workshop on "Access to HIV-Related Treatment," Catholic Dioceses of Ndola and the International HIV/AIDS Alliance, Zambia, April 2001)

1.1.B. Treatment
Treatment is a key element of care and support for people with HIV. It can be:

  • Curative - curing disease either temporarily or permanently.

  • Preventive - preventing disease from happening or becoming worse.

  • Palliative - reducing symptoms to reduce discomfort and distress.


Any action that improves a person's quality and length of life is a form of treatment. Treatment can happen even without medicines. For example, personal and social - or "psychosocial" support is also a treatment. This is because it can provide relief and improve a person's well being.

For medicines to be effective, other forms of treatment must support them. For example, if people feel cared for in their community and have food and clean water, they are likely to make better use of medicines.

Treatment needs vary depending on the stage of illness. Treatment can happen in different places and require different resources depending on the stage of illness. The needs of people with HIV should be central to deciding where treatment is provided. People with HIV need treatment to be accessible in different locations at different times. Sometimes it can start in one place (such as a hospital) and continue in another (such as a person's home). This can be better for the person who is ill, and it may reduce the cost and complexity of the work. When treatment is being given in different locations, it is important to have effective co-ordination of information, resources and services between the different places - see Chapter 1.1.A - case study: Mr Banda.

Important!

The focus of this handbook is HIV-related treatment with drugs – meaning pharmaceutical drugs and medicines used in the allopathic (“western”) system of medicine. However, treatment with drugs must always be linked to and supported by other forms of treatment - such as counselling, nutrition and traditional remedies – for them to be effective.

Activity: Understanding Treatment
Aim: To develop a common understanding of what is meant by treatment for people with HIV.

Instructions:
1. Explain the aim of the activity.
2. Present participants with a definition of treatment [see previous page].
3. Divide participants into small groups of 4-6 people.
4. Ask each group to brainstorm - based upon their own experiences - the different types of treatment for people with HIV.
5. Ask each group to draw a diagram or picture to show how different types of treatment relate to each other.
6. Bring everybody back together and ask the groups to share their results. Encourage the participants to ask each other questions and to make comments.
7. Facilitate a group discussion about what has been learned from the activity, based upon questions such as:
  • Which types of treatment are "necessary" for a person with HIV? Why?

  • Can any type of treatment be given in isolation?

  • How can treatment with drugs be positively affected by the other types of treatment? How can it be negatively affected?

8. Emphasise that all types of treatment are vital for people with HIV, but that the focus of this training work will be pharmaceutical drugs - meaning medicines used in the allopathic ("western") system of medicine [see Important! box on previous page].

Facilitators' notes:
  • Ensure that participants are clear about the definition of treatment before looking at how different types of treatment relate to each other.

  • Encourage participants to include a variety of types of treatment - such as nutrition, psychosocial support, traditional remedies and personal hygiene - alongside pharmaceutical drugs.


Example: Cambodia
At a skills building workshop, NGO/CBO participants identified different types of HIV-related treatment and drew a diagram to show how they related to each other:

[They placed "treatment with drugs" in the centre, and around it they placed "food", "counselling and moral support", "religious practices and prayer", "traditional remedies" and "education on prevention".]

Afterwards, the facilitator led a group discussion about what had been learned from the activity. For example, participants agreed that, if treatment with drugs is to be effective, it should be combined with and supported by other types of treatment - such as food and counselling.

(Reference: Adapted from a workshop on "Access to HIV-Related Treatment," Khmer HIV/AIDS NGO Alliance and the International HIV/AIDS Alliance, Cambodia, May 2001)

1.2. Linking treatment and prevention
HIV prevention aims to prevent the transmission of HIV and re-infection. HIV-related treatment aims to improve the quality of life of people with HIV. HIV prevention and HIV-related treatment support each other in many ways:

  • Well designed HIV prevention activities can lead to increased voluntary counselling and testing (VCT), which in turn can lead to broader and quicker access to treatment for people with HIV/AIDS;


  • Well designed HIV prevention activities can reduce fear and stigma around HIV/AIDS, which in turn improves the quality of life of people with HIV/AIDS as they become more accepted and understood in their families and communities;


  • Through VCT, people can learn about HIV-prevention and, if they are HIV-positive, be given information about how to live safely with the virus and plan for the future. VCT also helps people to get assistance early on and to learn about possible treatments for health problems that may occur. For example, VCT can be helpful for preventing tuberculosis and sexually transmitted infections;


  • If women learn that they have HIV/AIDS, because of prevention programmes and VCT services, they can access services that will reduce the chance of passing on HIV to their unborn or new-born children, if they become pregnant. Women and men might also choose to increase contraceptive use.


  • Access to care and support has been shown to increase condom use and other prevention behaviour amongst people with HIV/AIDS. These positive changes can be reinforced when care and treatment programmes deliberately promote and distribute condoms.


  • Increased availability of care and increased visibility and acceptance of people with HIV/AIDS makes the broader population more aware of HIV/AIDS and increases safer behaviour.


Case study: Home care in Cambodia
In Cambodia, home care teams from local organisations support a large number of families affected by HIV/AIDS. Most of the people with HIV found that their overall well-being improved due to the visits from the home care teams, families spent less money on medicines and had to make fewer visits to hospital. In addition, neighbours, friends and family members came to understand more about HIV and to be less afraid of the virus – there was less stigma around HIV/AIDS in the community making it easier to give education on HIV prevention.

Activity: Linking treatment and HIV prevention
Aim: To identify the links between HIV-related treatment and HIV prevention.

Instructions:
1. Explain the aim of the activity.
2. Present participants with a definition of HIV prevention.
3. Divide the participants into small groups of 4-6 people.
4. Ask each group to discuss whether they agree or disagree with the following statements:

HIV-related treatment can help to reduce the need for HIV prevention.
HIV prevention can help to reduce the need for HIV-related treatment.

5. Ask each group to make a diagram or drawing showing the links between HIV-related treatment and HIV prevention.
6. Bring everybody back together and ask the groups to share their results. Encourage the participants to ask each other questions and to make comments.
7. Facilitate a group discussion about what has been learned from the activity, based upon questions such as:
  • Does everybody have a similar view of the links between HIV-related treatment and HIV prevention? Why?

  • What is the single most important link between HIV-related treatment and HIV prevention? Why?


Facilitators' notes:
  • Ensure participants are clear about what is meant by HIV prevention before they assess its link to HIV-related treatment. Ensure that their definition includes prevention of other illnesses as well as prevention of HIV transmission.

  • Encourage participants to focus on the practical links between HIV prevention and HIV-related treatment, rather than the theoretical ones.

  • Ensure that participants keep focused on the links between HIV-related treatment and HIV prevention, rather than getting distracted by debates about which is more important.


Example: India
At a skills building workshop, NGO/CBO participants discussed the statements: "HIV-related treatment can help to reduce the need for HIV prevention. HIV prevention can help to reduce the need for HIV-related treatment." They found that, based upon their experiences, they strongly agreed with the statements.

Participants then drew a diagram of how they saw the links between HIV-related treatment and HIV prevention in practice:

[They set out the following ideas one after the other, leading from "epidemic begins" to "epidemic slows"]

  • Treatment being available gives messages of hope

  • More people get tested as there is hope

  • People accessing treatment feel good about planning for the future

  • People with HIV become more visible and speak out about positive living

  • More acceptance of people with HIV

  • People with HIV feel more empowered

  • Empowerment and quality of life encourage people in prevention

  • More people become involved in prevention


(Reference: Adapted from a workshop on "Access to HIV-Related Treatment," India HIV/AIDS Alliance and the International HIV/AIDS Alliance, India, February 2001.)

1.3.A. Availability of treatment
For people to use a treatment, it must be available - meaning that it can be found anywhere that is appropriate.

A treatment is available if the materials needed to treat a health problem can be found in the community. For example, basic drugs - such as paracetamol and simple antibiotics - are available in many countries, especially in towns. However, newer drugs - such as antiretrovirals - may not be widely available.

Some reasons why an HIV-related treatment might not be available include that:

  • The drug is new and restricted by law.

  • The drug is not imported into the country for commercial reasons.

  • The public health system does not allocate funds to purchase the drug.

  • Only specialists are allowed to give the drug.


Activity: Availability of treatment
Aim: To identify where HIV-related treatment is available in the community.

Instructions:
1. Explain the aim of the activity.
2. Present participants with a definition of availability of HIV-related treatment [see previous page]. Brainstorm some examples of what it means in practice at a community level.
3. Lead a group brainstorm about what is meant by availability of HIV-related treatment. Share some local examples of what it means in practice.
4. Divide the participants into three groups.
5. Give each group an example of an HIV-related treatment, such as:
Group 1: A simple treatment (such as paracetamol for pain relief).
Group 2: A well-known but less simple treatment (such as for TB).
Group 3: An antiretroviral drug.
6. Ask each group to draw a simple map of their community on a large piece of flipchart paper. Ask them to include all of the main local features (such as roads and buildings).
7. Ask each group to mark the places in their community where the treatment is available to a person with HIV. These might include their home, clinic, hospital, pharmacy, NGO, traditional healer or market place.
8. Bring everybody back together and ask the groups to share their results. Encourage the participants to ask each other questions and make comments.
9. Facilitate a group discussion about what has been learned from the activity, based upon questions such as:
  • What do the maps show about the overall availability of HIV-related treatment in the local community?

  • What types of treatment are more available than others? Why?

  • How might the availability of treatment vary in different types of communities - such as those in rural or urban areas?


Facilitator's notes:
  • Encourage participants to use the majority of their time to plot the availability of their treatment rather than to develop elaborate maps of their community.

  • Encourage participants to think of "informal" sources of treatment (such as traditional healers and market stalls) as well as "formal" sources (such as doctors and pharmacies).


Example: Rifampicin in an Indian community
At a skills building workshop, NGO/CBO participants drew a map to show the different places where rifampicin - a TB drug - is available in their local community. The places marked with a star indicate where the drug is found in the community:

[The stars were at the hospital, pharmacy and NGO clinic. Other places shown were the hospital outpatients department, shops, banks, the market, the school, and where the traditional healer practised.]

Afterwards, the facilitator led a group discussion about what had been learned from the activity. For example, participants agreed that "informal" sources of treatment - such as traditional healers - can have an important role to play in supporting people with HIV by helping them make better use of available treatments.

(Reference: Adapted from a workshop on "Access to HIV-Related Treatment," India HIV/AIDS Alliance and the International HIV/AIDS Alliance, India, February 2001.)

1.3.B. Accessibility of treatment
For people to use a treatment, it must not only be available - the treatment must also be accessible. This means that not only should the treatment be found in the appropriate place, it should also be easy for people to obtain and use the treatment properly.

Sometimes, a treatment can be available, but not accessible. This might occur because:

  • People cannot afford the right drug.

  • The treatment provider discriminates against people with HIV and refuses to give them the drug.

  • The treatment provider does not have the right skills to give the drug.

  • It is too difficult for people with HIV to get to where the drug is available.


A barrier to access to treatment is anything that prevents a person from getting the treatment that they need. There can be many barriers for people with HIV. They might be related to:

  • A service - such as its location, cost, staff attitudes, skills or facilities offered. For example, a clinic might only be open during the day when many people with HIV are working.

  • The context - such as the political, economic and cultural situation in which treatment is provided. For example, women might not be able to access treatment for sexually transmitted infections because sex is a taboo subject or because of the stigma of being seen at a STI clinic.

  • Attitudes to treatment - such as the knowledge and beliefs of community members. For example, local people might believe that HIV counselling and testing are only for members of "high risk groups" such as sex workers.


There are many different types of barriers to access to HIV-related treatment. These include:

  • Financial barriers - such as the cost of drugs and the need to prioritise other general supplies, such as food.

  • Organisational barriers - such as poor administration of treatment services and lack of skilled staff.

  • Physical barriers - such as treatment facilities being distant and transport not being available.

  • Social barriers - such as stigma being associated with a treatment and people being concerned about confidentiality.


[NB. Further information on this subject can be found in two Information Sheets - "Barriers to Access to Treatment" and "Factors Affecting Access to HIV-Related Treatment" - at the end of Chapter 1.]

Activity: Barriers and opportunities
Aim: To identify barriers and opportunities for access to HIV-related treatment.

Instructions:

Part 1: Identifying barriers

1. Explain the aim of the activity.
2. Present participants with a definition of access to HIV-related treatment.
3. Lead a group brainstorm about what access to HIV-related treatment means.
4. Divide the participants into small groups of 4-6 people.
5. Ask each group to brainstorm the barriers to access to treatment for people with HIV. Ask them to write each barrier on a separate piece of folded card.
6. Bring everybody back together and ask each group to share their results - by explaining their cards and placing them in a row along the floor (to represent road-blocks on the road to access to treatment). Encourage the participants to ask each other questions and to make comments.
7. Facilitate a brief group discussion about what has been learned from the activity, based upon question such as:
  • How many major barriers are there to access to HIV-related treatment?

  • How might barriers vary for people with HIV?


Part 2: Classifying barriers

8. Write the following headings at the top of separate pieces of flipchart paper:

Organisational
Physical
Social
Financial

Present to participants what each heading means - in terms of the types of barriers to access to HIV-related treatment [see previous page].
9. Working as a large group, classify the barriers that were presented by the small groups [see Part 1] - by writing each one down under the heading on the flipchart that best describes it.
10. Facilitate a brief group discussion about what has been learned from the activity, based upon questions such as:
? Are there more of one type of barrier than another? Why?
? Which types of barriers might be easier to overcome?

Part 3: Identifying opportunities

11. Divide the participants into four groups.
12. Give one out of the lists of physical, organisational, financial and social barriers [see Part 3] to each group.
13. Ask each group to identify which barrier on their list is the most important.
14. Ask each group to draw the most important barrier at the centre of a piece of flipchart paper. Then, ask them to draw opportunities to overcome the barrier - by writing them in circles around it. If the opportunity can be addressed easily, it should be drawn near to the barrier. If it is difficult, it should be placed further away.
15. Bring everybody back together and ask the groups to share their results. Encourage participants to ask each other questions and to make comments.
16. Facilitate a brief group discussion about what has been learned from the activity, based upon questions such as:
? To what extent can something be done about all of the barriers?
? Which opportunities would it be suitable for NGOs/CBOs to tackle?

Facilitators' notes:
  • It may be useful to allow participants time to read "Information Sheet: Barriers to Access to Treatment" before they classify the types of barriers.

  • Encourage participants to be as concrete as possible when identifying barriers; that will make it easier to find solutions.

  • Encourage participants to focus on simple, practical steps to overcome barriers - rather than on complex strategies that would be difficult to achieve.


Example: Zambia
At a skills building workshop, NGO/CBO participants brainstormed barriers to access to treatment for people with HIV. They wrote them on folded cards and then presented them on the floor - to represent roadblocks on the road to access to treatment.

Some of the cards said:

Stigma
Cost of drugs
No confidentiality
Clinics too distant

Then, the participants classified the barriers to treatment under four headings:

Organisational

  • Negative attitudes of health care workers

  • Lack of materials needed for treatment

  • Delays in treatment / health care workers not available

  • Corruption in health care facilities


Physical

  • Distance to health facilities

  • Lack of transport


Social

  • Traditional beliefs

  • Stigma

  • Ignorance

  • Denial

  • Myths and misinformation about HIV/AIDS


Financial

  • Poverty

  • Cost of drugs

  • Expense of user fees in hospitals

  • Cost of transport to health care facilities

  • Lack of medical insurance schemes


Finally, small groups selected the most important barrier out of one of the lists of financial, organisational, physical or social barriers. They then identified opportunities to overcome that barrier. For example, the group focusing on financial barriers identified the cost of transport as the barrier that causes the most difficulty for people with HIV. The same group identified the following opportunities to overcome the cost of transportation to health care facilities:

  • Provision of ambulances

- this could involve government, NGOs, donors, private companies, hospitals, clinics

  • Subsidise or share transport costs

- this could involve donors, private companies, NGOs, government

Afterwards, the facilitator led a group discussion about what had been learned from the activity. For example, participants agreed that a variety of people and organisations needs to be involved in overcoming barriers to treatment access.

(Reference: Adapted from a workshop on "Access to HIV-Related Treatment," Catholic Diocese of Ndola and the International HIV/AIDS Alliance, Zambia, April 2001).

Information Sheet #1: Barriers to Access to Treatment
There are many different types of barriers to access to HIV-related treatment. They can be classified in 4 main groups:

1. Organisational barriers

Access to HIV-related treatment becomes difficult if the necessary materials and skills are not available, and if services are not organised to support its proper use.

If health care services are not fully available or accessible, access to HIV-related treatment will be very limited. This may happen because of:

  • A lack of health services near to the people who need them.

  • Inadequate organisation and management of health services - for example if people cannot have tests, get a diagnosis, receive counselling and get treatment in the same location at convenient times.

  • Lack of staff or money within health services.

  • Unreliable supplies of drugs and other materials.

  • Lack of information and clear policies to support effective treatment

  • Confusing procedures and poor administration within health services, such as unconfidential record-keeping or badly organised referral systems.


2. Physical barriers

In urban areas - where transport is more available and distances are smaller - people can usually get to health facilities or health workers can visit them in their homes. However, in rural areas and communities outside the boundaries of towns and cities, physical access to HIV-related treatment is much more difficult.

Some of the common physical barriers include that:

  • Health facilities may be far away, with people having to travel great distances with inadequate transport.

  • The terrain may be difficult to cross (for example due to mountains).

  • The journey may be dangerous (for example due to conflict, warfare or criminal activity).

  • There may be few vehicles or other forms of transport available.


3. Social barriers

People might not access HIV-related treatment because they have certain beliefs about the treatment. For example, they might think that drugs would not make a difference to them, or that unpleasant side effects would out-weigh the benefits.

Attitudes to HIV/AIDS can also prevent people from accessing HIV/AIDS-related treatment.
  • Secrecy about a person's HIV status can result from people being afraid to talk about HIV/AIDS in their family or community.

  • People experience stigma when they are made to feel ashamed about HIV or to fear that others will blame them for it.

  • When people with HIV are treated unfairly, they suffer discrimination. People may fear that their HIV status will be obvious to others if they are seen to be having treatment. This could result in loss of work or home, or their children may be stopped from going to school. Sometimes health workers refuse to provide treatment for people with HIV - because they fear that they might become infected. They may also believe that they do not have sufficient technical skills to provide treatment.

  • Fear of stigma and discrimination can also prevent people form seeking treatment.

  • Including people with HIV in family and community activities and involving people with HIV in prevention, care and support and treatment work on HIV/AIDS is an effective way of reducing stigma and discrimination.

  • People may think that HIV mostly affects people in specific groups, such as sex workers, men who have sex with men and injecting drug users. Often these groups are already discriminated against, have poor access to health care and HIV/AIDS adds to their difficulties. Overcoming stigma and discrimination is an important way of improving their access to HIV-related treatment.

  • Confidentiality is about sharing sensitive information - such as a person's HIV status - with only those who really need to know. The person most affected by the information - the person with HIV - is the "owner" of the information. Others must respect their wishes about sharing it. Wherever possible, the person with HIV should be encouraged to share the information him/herself with those who really need to know. If this cannot be done, the person's consent must be obtained before passing the information to others. If a person feels that their HIV status will remain confidential, they will be more likely to seek counselling, testing, treatment and support.


NOTE: False “cures”
Sometimes, people persuade those who have, or think they have HIV to use their services by seeming to offer acceptance and help. They give false or dangerous treatments that they claim can make people better or even “cure” them. But there is still no known treatment - whether traditional, pharmaceutical or “alternative” - which can make the HIV virus go away or guarantee that symptoms will not reappear. So, any claim of a “cure” should be regarded with extreme caution.

4. Financial barriers

People with HIV, their families and communities, often face difficult choices about the costs of treatment. For example, they might have to decide between paying for treatment and buying food.

Drug pricing
It is useful to understand how drug producers and suppliers make decisions about how much to charge for drugs. Factors that affect prices include:

  • The costs of putting a drug on the market, including its research, production, distribution and marketing.

  • The price that people are willing or able to pay for a drug.

  • Legal controls on drug prices.

  • Patents (a form of legal “ownership”) – giving the producers of a drug sole control of it and enabling them to set prices for a number of years without competition.

  • Other, older, drugs being copied as “generic” drugs by other companies – which compete with the original drug and can lead to prices being reduced.


Reducing the cost of drugs is an important part of improving access to HIV-related treatment. This has been done in some parts of the world by:

  • Buying cheaper “generic” drugs from companies in countries where patents for the original drugs have expired.

  • Several buyers combining their purchase of drugs and getting cheaper prices by buying larger quantities.

  • Political action by people with HIV and advocacy groups to get companies to lower their prices.

  • Setting up insurance schemes or solidarity funds to buy some types of treatment.

  • Political action to get governments to declare HIV/AIDS a national emergency, and to use legal measures to introduce local generic manufacturing.

  • Legal action to force governments to provide drugs at no cost on government health schemes.


Information Sheet #2: Factors Affecting Access to Treatment
Access to HIV-related treatment is affected by many factors. These include:

1. Types of Health Systems

Drugs and other forms of treatment are generally used within the various health systems of a country. Health systems can be defined as public (meaning that they are provided and funded by the government) or private (meaning that they are provided and funded by commercial means or NGOs). Traditional health systems also often function alongside other systems or, in some cases, provide an important source of care that is easily available and accessible.

Public health systems are a way governments fulfil their duty to provide for the well being of their people. Each country has a different way of doing this, one common way is by providing funds from the national budget to spend on health.

The public health system may provide care and treatment without charge, or may charge user fees (with the person paying all or part of the costs). Services are usually supported by national policies which help to control costs and to ensure the safe and effective use of treatments.

Private health systems are not funded by the government and may not participate in government health policies or guidelines on the use of treatments. This depends on the legal requirements for health care in a particular country.

Examples of private health care include:
  • Doctors, care providers, hospitals and clinics that charge for their services and drugs.

  • Licensed pharmacies and general stores that sell drugs and medical supplies.

  • Insurance schemes that pay for health care in return for a regular payment from the client.

  • NGOs/CBOs that may or may not charge for their services.

  • Informal providers such as market traders and unlicensed treatment providers - called "quacks" in some places.


Traditional health systems - which involve traditional healers and use traditional medicines - are common in many countries. They are important because:

  • In some places, they may be the main source of health care that is available locally and easily accessible.

  • They provide an alternative to medical treatment that might cause problems such as side effects.

  • They often provide socially and culturally acceptable ways of dealing with illness.


In some countries, traditional healers also have a working relationship with medical practitioners in the public and private health systems. Where this happens, it can be possible to encourage traditional healers to:

  • Care for HIV-related illness and sexually transmitted infections.

  • Teach people about harmful practices.

  • Dispel myths about HIV.

  • Teach people about HIV prevention.


2. Economic and political factors

The economic and political situation of a country also affects access to HIV- related treatment. The poorest countries have the heaviest burdens of illness and HIV/AIDS can make existing difficulties even worse. A lack of adequate security, food and education makes it much harder for people to resist infections. If there is an overall lack of money - both nationally and individually - there are fewer funds for treatment.

Political will - which involves leaders deciding to make HIV/AIDS a priority - can drive action on access to HIV-related treatment. This often depends on commitment from the most senior people in power, from presidents to community leaders. Political will can change official priorities for health care and is also important for reducing stigma and discrimination.

3. Stage of the epidemic

The stage of the HIV epidemic in a country affects how many people need treatment. In turn, this affects the demands on the local health systems:

Early stages of HIV/AIDS epidemic

At this stage, most people with HIV are not yet sick and only a small number need treatment. Therefore, the needs are likely to be:

  • HIV prevention, including diagnosis and treatment of sexually transmitted infections and tuberculosis.

  • HIV information, diagnosis, counselling and support to help people to begin to cope psychologically.

  • Preparation to help people to cope in the future when more people will become sick.

  • Training and sensitisation of health care workers.

  • Sensitisation and education of communties.


Later stages of HIV/AIDS epidemic

At this stage, more people with HIV are visibly sick or dying, and more need treatment. Therefore, the needs are likely to be:

  • Support and information for people who have HIV but are not yet sick.

  • HIV-related treatment and care and support for people with varying degrees of illness.

  • Support for people who care for others in their family or community.

  • Support for adults and children who have lost family members.

  • HIV prevention to reduce both the number of new infections and the extent of illness in those with HIV.

  • Balancing needs relating to HIV with the community's overall health and social needs.


National Drug Policy and Essential Drugs List
Most countries have a National Drug Policy that:
  • Regulates the supply and sale of medicines.

  • Decides on the national Essential Drugs List.

  • Provides guidelines for the use of drugs.

  • Sets standards for training.


An Essential Drugs List is based on the idea that most health problems can be treated with a small, carefully selected list of drugs. Getting, distributing and managing the drugs can be more efficient and cost-effective when focused on a limited number of products. Prescribing can also be safer and more effective - because health workers and patients can become familiar with the effects and uses of a limited number of drugs.

1.4 Want to know more?
Care, Involvement and Action: Mobilising and Supporting Community Responses to HIV/AIDS Care and Support in Developing Countries. International HIV/AIDS Alliance, June 2000.
- a report sharing the lessons learned in community based care and support in Africa, Asia and Latin America

Care and Support for People with HIV/AIDS in Resource-Poor Settings. Charles Gilks and others. Department for International Development (DFID). 1998.
- a review of care needs for people with HIV, discussion of strategies, costs and impact of ways to improve quality of life

NGO Perspectives on Access to HIV-Related Drugs in 13 Latin American and Caribbean Countries. UNAIDS Best Practice Collection. 2000.
- a review of NGO perspectives on access to HIV-related drugs and availability of treatment in national health systems

HIV/AIDS Prevention in the Context of the New Therapies. UNAIDS Best Practice Collection. 23-24 February 1998.
- a discussion of changing contexts of HIV prevention and care and the relevance of antiretroviral drugs to prevention and care programmes

Oxborne C et al. Models of Care for Patients with HIV/AIDS. AIDS 1997, Vol 11 (suppl. B)
- an article, discussing models of care, contexts of HIV epidemic, health service delivery, continuum of care

Patent Situation of HIV/AIDS-Related Drugs in 80 countries. UNAIDS. 2000.
- an overview of the patents on HIV/AIDS-related drugs in 80 countries

Pharmaceuticals and the WTO TRIPS Agreement: Questions and Answers. UNAIDS & WHO, January 2000.
- a document of commonly asked questions and answers about the drugs, intellectual property rights and international trade laws

Access to Drugs. UNAIDS. October 1998.
- a report discussing issues related to access to HIV-related drugs

Opening up the HIV/AIDS Epidemic, UNAIDS and WHO, November 2000.
- a guidance document on encouraging beneficial disclosure, ethical partner counselling, appropriate use of HIV case-reporting and confidentiality

Source: Access to Treatment Handbook
This is an extract from Mobilising NGOs, CBOs and PLHA Groups for Improving Access to HIV/AIDS-related Treatment: A Handbook of Information, Tools and Other Resources , developed by the International HIV/AIDS Alliance with support from the World Health Organization (WHO) and the Joint United Nations Programme on HIV/AIDS (UNAIDS), published in this form in June 2002.

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