YOU ARE HERE:
Access chapter 2: Foundations of treatment
   Last updated: 19.07.02
Summary
Chapter 2 of this handbook helps groups to develop an understanding about:

  • The basic elements of treatment - including how helping relationships combine with knowledge, skills, attitudes and ethics for effective treatment work.

  • How different treatments vary - including how technical, cost and social factors affect what HIV-related treatment NGOs, CBOs and PLHA groups can provide and what HIV-related treatment people with HIV can access.

  • Working with others to improve access to treatment - including partnerships with communities, donors, government and others, and advocacy at community, national and international levels.


2.1.A. Helping relationships for treatment work
Helping relationships aim to improve the quality of people's lives. They are at the core of providing effective treatment for people with HIV.

Helping relationships are important in HIV-related treatment work because:

  • They bring together someone who needs treatment and someone who can respond to those needs in a supportive and effective way.

  • They are based on identifying the needs of the person seeking treatment and helping them to live a better and longer life.

  • They are two-way - with both people needing openness, co-operation and information for treatment to be effective.

  • They are based on trust and need to grow over time.


There are many kinds of helping relationships. These include between a doctor and a patient, and between a community volunteer and someone who is ill at home.

Helping relationships in treatment work are built and maintained in different ways:

  • Making treatment available and accessible helps to build trust within helping relationships. Helping relationships support good use of treatment - because even drugs need a supportive environment to work properly.

  • People with HIV can both help themselves and support others affected by HIV/AIDS. Any relationship involving people with HIV needs to be based on a positive attitude and a belief that treatment is worthwhile.

  • A health worker who prescribes HIV-related drugs has special technical knowledge and skills - which people needing treatment often do not have. The skilled helper and the person with HIV should decide together what treatment is useful and what effect it might have on the person's life, not just medically but also economically and socially.

  • A person with HIV needs to be respected as someone who can make choices about treatment. Treatment will be more effective if the helpers, with technical knowledge, encourage people with HIV to be actively involved in their own treatment.

  • A person with HIV who helps her/his sero-negative partner avoid infection and a sero-negative person who supports a person with HIV maintain treatment use are also examples of helping relationships.


Activity: Helping relationships
Aim: To understand the different helping relationships involved in providing treatment for people with HIV.

Instructions:
1. Explain the aim of the activity.
2. Divide participants into small groups of 4-6 people.
3. Ask each group to think of a "typical" person with HIV in their community. Ask them to brainstorm who might be involved in helping relationships to provide treatment for that person.
4. Give each group a large piece of flipchart paper. Ask them to draw their "typical" person with HIV in the centre. Then ask them to write the people that they have brainstormed around the person.
5. Give each group a different colour pen. Ask them to draw lines to show where helping relationships occur between the people that they have drawn. This will result in a "web" of helping relationships.
6. Bring everybody back together and ask the groups to present 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:
  • Why are helping relationships necessary for providing effective treatment?

  • Is the person with HIV the only one to benefit from helping relationships?

  • Should a helping relationship be one-way or two-way? How can a "receiver" help a "provider"?

  • What sort of help can be given through a helping relationship?


Facilitators’ notes:
  • Participants might think of a helping relationship as only being between a doctor and a patient. Therefore, encourage them to think as broadly as possible about all types of people that might be involved, including family, friends, colleagues, health workers, counsellors and other people with HIV.

  • Emphasise to participants that it is important to see people with HIV as active "providers" as well as "receivers" within helping relationships.

  • Encourage participants to consider how "providers" of support might be able to help each other. For example, the family of a person with HIV could help health workers by sharing information about their needs and how they might be met.


Example: Zambia
At a skills-building workshop, participants drew a diagram to show all of the different people that could be involved in helping relationships to provide treatment to a "typical" person with HIV. They then drew in lines to show how those people relate to the person with HIV and to each other - resulting in a "web" of helping relationships:

[The web included: family, church groups, care givers, lab technicians, counsellors, neighbours, friends, pharmacists, colleagues, support groups, community health worker, spouse, clinical officer, doctor, nurse.]

Afterwards, the facilitator led a group discussion about what had been learned from the activity. For example, participants agreed that, for treatment to be effective, a person with HIV needs to be both a "provider" and "receiver" in helping relationships.

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

2.1.B. Knowledge, skills and attitudes for treatment work
Knowledge, skills and attitudes are all important for establishing a helping relationship and providing effective treatment to a person with HIV.

  • Knowledge means an understanding of information and ideas. It is important for HIV-related treatment because it allows caregivers to understand what is going on, to reassure the person seeking help, and to suggest the most appropriate plans. It is important that knowledge is kept up to date - so that it can be the basis for providing the best possible treatment.


  • Skills means knowing how to do something. They might relate to technical work (such as how to prescribe medicines) or "people" work (such as how to support a person with HIV to communicate their treatment needs). Some of the most essential skills for providing effective treatment include:

- Listening - Planning - Taking action

  • Attitudes means how individuals view issues and other people. Appropriate attitudes are vital for people involved in HIV-related treatment work. For example, if a person is open and genuine - rather than condemning or pitying people with HIV, it will encourage people to come forward for help, take care of themselves and avoid feeling overwhelmed. It is also important for people involved in treatment work to be respectful and accepting of socially marginalised people like sex workers, prisoners, men who have sex with men or injecting drug users.


Some examples of the knowledge, skills and attitudes needed for effective HIV-related treatment work include:

Knowledge

  • HIV transmission

  • Nutrition

  • Health education

  • Positive living

  • HIV-related treatment:

- Symptoms and causes
- Treatments for common problems
- Drugs
- New treatments

Skills

  • Communication:

- Asking questions
- Listening
- Checking people understand
  • Planning/managing treatment with the person with HIV

  • Follow up and referral

  • Training

  • Counselling


Attitudes

  • Compassion

  • Respect and non-judgement

  • Honesty

  • Common sense

  • Equality

  • Positive and encouraging


Activity: Knowledge, skills, attitudes
Aim: To identify the knowledge, skills and attitudes needed by an "ideal" treatment provider.

Instructions:
1. Explain the aim of the activity.
2. Present participants with the definitions of knowledge, skills and attitudes [see previous page]. Provide them with an example of what each one means in practice in relation to HIV-related treatment work.
3. On a large piece of flipchart paper, draw three inter-linking circles and label them "knowledge", "skills" and "attitudes." Draw an "ideal" treatment provider in the centre where the circles overlap.
4. Ask participants to write the knowledge, skills and attitudes of an "ideal" treatment provider on small pieces of paper and to stick them in the appropriate circle on the flipchart.
5. Review what everybody has placed in the three circles. Encourage the participants to ask each other questions and to make comments.
6. Facilitate a discussion about what has been learned from the activity, based upon questions such as:
  • Is one of knowledge, skills and attitudes identified more important than the others?

  • Which knowledge, skills and attitudes are "preferable" and which are "necessary"?

  • How does the "ideal" treatment provider compare to reality? What practical steps can NGOs/CBOs take to close the gap?


Facilitators’ notes:
  • Remind participants that no-one is perfect and that the "ideal" treatment provider is simply something to aim for! Help them to focus on practical ways to make their own work as near to "ideal" as possible, while taking into account their context and resources.

  • Encourage participants to see that a balance of knowledge, skills and attitudes is necessary for treatment work to be effective. For example, a doctor might have immense knowledge, but, without good communication skills and a positive attitude, their work will not be successful.


Example: India
At a skills building workshop, NGO/CBO participants brainstormed what knowledge, skills and attitudes are required to carry out effective HIV-related treatment. They then presented them in the form of a diagram with an "ideal" treatment provider at the centre.

The lists were:

Knowledge:
Basics of HIV
Technical knowledge
Up-to-date information on treatments
Psycho-social issues
Human rights issues
Referral services

Skills:
Building trust
Empathy
Listening
Clarity of thinking
Moving at client's pace
Communication
Counselling
Sharing information

Attitudes:
Positive
Sensitive
Patient
Non-judgemental
Supportive
Focus on empowerment
Emotionally strong
Confident
Compassionate
Respectful

Afterwards, the facilitator led a group discussion about what had been learned from the activity. For example, participants agreed that the negative attitudes of doctors often arise because they lack skills and resources, and that they need moral and practical support from others to improve their provision of treatment.

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

2.1.C. An ethical approach to treatment work
A respect for ethics is an important part of effective HIV-related treatment. This means the principles or morals that shape people's personal and professional behaviour and their attitudes towards others.

An ethical approach to treatment is based on the principles of pro-actively doing no harm and minimising risk. Ethics are particularly important for work on HIV/AIDS - as it is a highly personal and sensitive subject. In addition, work on access to HIV-related treatment is, at times, complex and controversial - especially as it highlights issues of inequality.

Some examples of an ethical approach to HIV-related treatment work include:

  • Empowering people with HIV and allowing them to choose for themselves.


  • Not discriminating against people, for example because of their HIV status or because they use illegal drugs.


  • Maintaining confidentiality.


  • Ensuring appropriate and equal participation by all those involved.


  • Ensuring that benefits and difficulties are shared appropriately among those involved.


  • Appropriate referral.


Wherever possible, an ethical approach to HIV-related treatment should be developed in a participatory way - involving both "providers" and "receivers". This will help to ensure that everyone is following an agreed way of working.

Activity: Ethical approach
Aim: To identify an ethical approach to HIV-related treatment work.

Instructions:
NB. Before starting this activity, the facilitator needs to develop three role-plays about providing treatment to people with HIV in the community. Each role-play should highlight a key ethical issue relating to treatment work, such as:
  • Role-play 1: A person with HIV being refused treatment.

  • Role-play 2: A person with HIV refusing to take treatment.

  • Role-play 3: A health worker testing someone for HIV without their consent, and then breaching confidentiality about the result.


The role-plays should involve a variety of treatment providers (not just doctors), and should try to show people with HIV in different types of family or community situations.

1. Explain the aim of the activity.
2. Ask a small group of participants to act out the first role-play.
3. Facilitate a group discussion about what ethical issues about HIV-related treatment were highlighted by the role-play. Ask participants how the situation could have been improved. Encourage the participants to ask each other questions and to make comments.
4. Repeat the process for the second role-play.
5. Repeat the process for the third role-play.
6. Facilitate a group discussion about what has been learned from the activity, based upon questions such as:
  • Why might people act unethically? How can you support them to change their behaviour?

  • Is it ever appropriate to breach a person's confidentiality when providing HIV-related treatment?

  • How can a treatment provider respond if their ethics are different from other carers or the person with HIV?


Facilitators' notes:
  • Select enthusiastic and appropriate participants to act out the role-plays and give them an outline of the story in advance so that they can prepare.

  • Encourage those acting out the role-plays to be creative - for example wearing costumes or using props - in order to bring the situations to life.

  • Encourage participants to draw the links between ethics and the other aspects of an "ideal" treatment provider - namely knowledge, skills and attitudes [see previous activity].

  • Encourage participants to consider how their personal beliefs - for example about religion - might affect their professional ethics for treatment work.


Example: Refusal of treatment
At a skills building workshop, NGO/CBO participants acted out the following role-play about a person with HIV being refused treatment:

  • Tilak is known in his community as a "drug user." He is feeling very ill so he goes to see the doctor at the local NGO clinic. Dr. Singh suspects that Tilak may have meningitis and TB.


  • Dr. Singh recommends that Tilak be taken to the government hospital for more specialised care. A staff member from the NGO accompanies Tilak to the hospital.


  • Tilak is refused treatment in the out-patient department and denied admission to the hospital.


The participants then identified the key ethical issues highlighted by the role-play and how the situation could be improved. The participants then followed the same process for two further role-plays - the first about a person with HIV refusing to take treatment, and the second about a health worker testing someone for HIV without their consent and breaching their confidentiality about the result.

Afterwards, the facilitator led a group discussion about what had been learned from the activity. For example, participants agreed that refusal to treat someone who is thought to be HIV-positive is discrimination and a violation of their right to health.

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

2.1.D. Information for treatment work
Good information is vital for treatment work - as it enables a person needing treatment and a person providing treatment to come to a decision together about what will be appropriate and effective.

Effective HIV-related treatment work requires information in two areas:

1. The health problem - To provide effective treatment, a diagnosis has to be made to understand what is causing the problem. This means identifying and naming specific illnesses. It usually requires some special training, but people who are not qualified health workers can often diagnose common conditions after some basic skills building - e.g. community health workers are often trained to recognise the signs of TB. A diagnosis can be based on symptoms - such as cough or diarrhoea - and the history of the problem (meaning what is said about how the symptoms developed). Sometimes, it may also be necessary to do a laboratory test to be certain of the diagnosis or to monitor progress during treatment.

2. The treatment - When a diagnosis and treatment have been decided,
the relevant information needs to be:

  • Objective - meaning that it is "neutral," not affected by discriminatory attitudes, and free of bias (for example from someone seeking to persuade people to use a particular type of treatment).


  • Accurate - meaning that it is up to date and gives people a clear idea of what the treatment is, when and how to use it, and how it will make a difference to particular health problems.


  • In simple language - meaning that it is communicated in a way that those providing and receiving the treatment can easily understand.


NOTE: HIV testing

People often ask for an HIV test because they have some symptoms such as continual diarrhoea. A laboratory test, to check a sample of blood, can confirm the diagnosis. Sometimes trained health workers can diagnose HIV infection without testing, because the person's pattern of illness strongly suggests that HIV is the cause. However, testing, like any form of treatment, should only be carried out with the informed consent of the person.

Early testing and diagnosis for HIV can be very helpful because, when a person knows their HIV status, they can act to both take care of themselves and avoid passing the virus to others. If the result is positive, they can get the care and support they need for living with HIV. This process should be accompanied by appropriate information, counselling and support - to help the person to cope with the news, to seek treatment that they need, and to plan for the future.

Activity: Identifying problems and treatments
Aim: To identify common health problems experienced by people with HIV, treatments for them and the type of information needed.

Instructions:

Part 1: Common health problems
1. Explain the aim of the activity.
2. Draw a line on a large flipchart to represent the "lifeline" of a typical person with HIV/AIDS in the local community. For example, it might start with the person receiving a diagnosis of being HIV positive and end with their death.
3. Ask participants to suggest common health problems that the person with HIV might experience during their life. Examples might include fever or TB. Write these down at appropriate points along the lifeline.
4. Facilitate a brief discussion about what has been learned from the activity, based upon questions such as:
  • What does the lifeline show about the number and types of illnesses that a person with HIV might experience?

  • Which of these illnesses are "major" and which are more "minor"?


Part 2: Treatment for common health problems
5. Ask participants to select the 3-4 most common health problems identified in Part 1. Ask them to write each one on a separate piece of flipchart paper.
6. Ask the participants to suggest possible treatments for each problem. List them on the appropriate sheet. Examples might include aspirin or TB drugs.
7. Clarify any points that are unclear and correct any misconceptions (for example about which drugs are effective for which illnesses).
8. Facilitate a brief group discussion about what has been learned from the activity, based upon questions such as:
  • What do the lists show about the variety of treatments that a person with HIV might require during their lifetime?

  • Which treatments are available and accessible in the local community?


Part 3: Information about treatment
7. Ask each participant to select one of the treatments identified in Part 2.
8. Give the participants time (such as over a lunch break) to fill in a Treatment Information Sheet about their selected treatment [see example at the end of Chapter 2].
9. Bring the participants back together to share their experiences on filling in the sheets. Encourage them to ask each other questions and to make comments.
10. Facilitate a group discussion about what has been learned from the activity, based upon questions such as:
  • How easy was it to get the information?

  • Who can get this information? Who needs it?

  • Is all of the information necessary? Is more needed?


Example: Zambia
At a skills building workshop, NGO/CBO participants drew a lifeline of a person with HIV, noting the common health problems they might experience:

[The line ran from "diagnosis of HIV+" to "death". Diseases and symptoms were listed in roughly the following order: tuberculosis, skin rashes, genital sores, fevers, diarrhoea, malaria, oral thrush, skin infections, herpes zoster, depression, persistent fever, arthritis, boils, neuritis, fungal infections, chronic diarrhoea, pneumonia.]

The participants then identified 3-4 of the most common health problems and listed the possible treatments for them. For example, for chronic diarrhoea participants identified the following treatments:

Common health problem: Chronic diarrhoea

  • Oral Rehydration Salts

  • Guava leaves

  • Charcoal

  • Folic acid

  • Strong tea leaves

  • Rice water

  • Imodium (loperamide)

  • Intravenous fluid (for severe diarrhoea)

  • Flagyl (metronidazole)

  • Septrin (co-trimoxazole)


Then the participants selected one of the identified treatments and filled in a Treatment Information Sheet (see end of Chapter 2) for it. For example:

Treatment Information Sheet

Basic information:
What is the treatment called?
Imodium

How does the treatment help people with HIV?
Stops chronic diarrhoea

Using the treatment:
What form does the treatment take and how is it used?
Capsule that can be swallowed

Afterwards, the facilitator led a group discussion about what had been learned from the activity. Participants agreed that people with HIV, their families, NGOs/CBOs and health workers all need clear and accurate information about treatment from people with the relevant training and experience.

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

2.2. How different treatments vary
All effective treatments have some common elements - such as helping relationships and respect for ethics. However, the factors that affect decisions about treatments can be very different. These include:

Technical factors: Treatments can differ in the training, equipment and facilities needed to provide them. For example, in a home care setting, these would vary greatly for paracetamol compared to antiretroviral drugs.

Key technical questions to consider:
? How much training is required to provide the treatment?
? Can the treatment only be provided by a qualified health worker?
? Are special equipment, facilities or services required to provide the treatment?
? Is it easy for the person receiving the treatment to use it?
? Is the treatment only effective if it is taken in combination with others?
? Does the person using the treatment need the help of a skilled worker to use it?
? Would you start the treatment without being sure that you have enough supplies for the full course?
? Can the treatment be delivered easily to a large number of people?

Financial factors: The costs of treatments vary greatly. It is important to consider if costs can be met for the whole time that a treatment should be given. If a treatment is not used for the correct time, people can become ill again or become resistant to certain drugs - making further treatment more difficult or even impossible. It is important to consider how much it will cost for someone to access the treatment for as long as they need it.

Key financial questions to consider:
? What is the actual cost for the full course of the treatment?
? Are there other costs involved in the treatment (such as travel, food or the necessary laboratory tests)?
? What are the costs involved in delivering the treatment to a sizeable number of people?
? Would you start providing the treatment if you didn't have enough money to pay for the full course?

Social factors: Social factors play an important role in accessing treatment. For example, if those attending an HIV/AIDS clinic are stigmatised, people may not go there for treatment. Communities view different treatments in different ways. For example, it may be acceptable for people to openly use paracetamol, but stigmatising to use TB drugs. So, even if the treatment is available, people may be afraid to access it.

Key social questions to consider:
? How does the community view the treatment?
? What are the social implications for someone who goes for / uses the treatment?
? Is the treatment sensitive to the person seeking treatment? For example, can a sex worker access the treatment?
? Do cultural beliefs or practices have an impact on the treatment?

Activity: Assessing treatments
Aim: To assess different treatments in terms of their technical, cost and social factors.

Instructions:
1. Explain the aim of the activity.
2. Divide the participants into three groups. Allocate a type of treatment to each group, for example:
Group 1: A drug for TB prophylaxis - such as isoniazid (INH).
Group 2: An antiretroviral drug - such as zidovudine (AZT).
Group 3: A drug for pain relief - such as paracetemol.
3. Give each group a copy of a Treatment Assessment Sheet [see example at the end of Chapter 2]. Ask them to use it to assess the technical, financial and social factors that affect their treatment.
4. Bring everybody back together and ask the groups to share their results. Encourage the participants to ask each other questions and to make comments.
5. Facilitate a group discussion about what has been learned from the activity, based upon questions such as:
  • To what extent do the factors vary for the different treatments?

  • How would the different factors affect an NGO's/CBO's decisions about what type of treatment to provide?

  • Which factors could be easily changed? Which could not?


Facilitators' notes:
  • Select treatments that participants are familiar with - so that they can carry out a thorough analysis.

  • Encourage participants to discuss the answers to the questions in the Treatment Assessment Sheet and to reach consensus within their group - rather than simply ticking the boxes.

  • Encourage the participants to identify other key questions about technical, financial and social factors affecting treatment.


Example: Treatment assessment
At a skills building workshop, NGO/CBO participants used a Treatment Assessment Sheet to analyse the technical, financial and social factors affecting three types of HIV-related treatment - paracetamol (a drug for pain relief), isoniazid (a drug for TB prophylaxis) and zidovudine (an antiretroviral drug).

For example, the analysis of technical factors for paracetamol showed that:

Treatment: Paracetamol
Technical Factors

How much training is required to provide the treatment?
LOW

Can the treatment only be provided by a qualified health worker?
NO

Are special equipment, facilities or services required to provide the treatment?
NO

Is it easy for the person receiving the treatment to use it?
YES

Is the treatment only effective if it is taken in combination with others?
NO

Does the person using the treatment need the help of a skilled worker to use it?
NO

Would you start the treatment without being sure that you have enough supplies for the full course?
YES

Can the treatment be delivered easily to a large number of people?
YES

Afterwards, the facilitator led a group discussion about what had been learned from the activity. For example, participants agreed that NGOs/CBOs need to make strategic decisions about balancing general, cheap treatments (such as paracetamol) with HIV-specific, expensive ones (such as anti-retroviral drugs).

(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.)

2.3.A. Partnerships to improve access to treatment
No one person or organisation on their own can address all of the treatment needs of people with HIV. Working with others can help to improve access to new and existing treatments and resources. It can also improve the quality of the treatment that is provided and help to reach more people.

Examples of the complementary roles of different types of organisations include that:

  • Communities and solidarity groups can provide personal support for people with HIV and keep others in touch with treatment needs.


  • NGOs/CBOs can provide people, training, information, ideas, material support and skills - such as in counselling - for treatment work.


  • Government systems can provide policies, leadership and material support - such as skilled health workers, drugs and medical supplies - for treatment work.


  • Businesses can provide financial or "in kind" sponsorship for treatment work, and encourage public support.


  • Professional associations and academic institutions can contribute knowledge and guidance on treatment as well as contributing research and generating new knowledge that may be helpful in improving treatment.


  • Donors can provide funds for treatment work and facilitate learning from the experiences of other countries.


  • Religious organisations can provide volunteers for treatment work, mobilise community support and help to reduce discrimination.


  • Media can provide accurate information about treatment issues and help to raise awareness and reduce stigma.


Activity: Identify partners for an NGO/CBO
Aim: To identify who an NGO/CBO can work with to improve access to HIV-related treatment in their community.

Instructions:
1. Explain the aim of the activity.
2. Divide participants so that they are working with colleagues from their own NGO/CBO.
3. Ask participants to write the name of their NGO/CBO in a circle in the centre of a piece of flip chart paper.
4. Ask participants to brainstorm what people and organisations their NGO/CBO could work with to improve access to HIV-related treatment in their community.
5. Ask participants to write each of the people and organisations in a circle around their NGO/CBO. Ask them to draw a line connecting each one to their NGO/CBO.
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:
  • What practical support and resources can each person or organisation bring to work on access to treatment?

  • Which people or organisations are already involved in work on access to treatment? What are they doing?

  • What next steps should the NGO/CBO take to form a partnership with the people and organisations that they have identified?


Facilitators' notes:
  • Encourage participants to think broadly and creatively about who they can work with to improve access to HIV-related treatment. For example, help them to think beyond medical professionals and to also consider groups such as religious organisations and businesses.

  • Remind participants that, for drug-related treatment work to be effective, their NGOs/CBOs will also need to form partnerships with groups involved in other areas of treatment work, such as counselling and nutritional support.


Example: Zambia
At a skills building workshop, a participating NGO called Thandizani identified organisations that it could build partnerships with to improve access to HIV-related treatment in their community:

Christian Medical Association of Zambia (drugs, information)
Zambia Integrated Health Programme (funds)
District Health Management Team (HIV test kits, drugs, condoms, IEC)
People with HIV (experience sharing, information)
Community Care Group (counselling, advocacy, information, care)
International HIV/AIDS Alliance (training)

Afterwards, the facilitator led a group discussion about what had been learned from the activity. For example, participants agreed that working in partnership can not only increase the quantity of work on access to HIV-related treatment, but also improve the quality - because it allows groups to share their lessons and ideas.

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

2.3.B. Advocacy to improve access to treatment
Advocacy is a process of working towards changes in attitudes, policies and practices. It is carried out by people proposing improvements on behalf of themselves or others, and involves activities to influence decision-making individuals and institutions.

Advocacy to improve access to HIV-related treatment needs clear strategies to bring about change on several different levels - including community, national and global. Advocacy at one level can significantly impact the other levels.

Examples of advocacy by NGOs/CBOs for improving access to treatment at different levels include:

Community level
  • Accompanying people with HIV to the hospital or clinic to ensure that they receive treatment.

  • Influencing local pharmacists to stock drugs that are needed for people with HIV.


National level
  • Participating in the development of standard treatment guidelines for HIV/AIDS.

  • Influencing the government to improve the supply of HIV-related drugs in hospitals and clinics.


Global level
  • Lobbying international pharmaceutical companies to reduce the price of HIV-related drugs.

  • Encouraging international drug suppliers to make HIV-related drugs widely available at low cost.


Activity: Understanding advocacy
Aim: To raise awareness about how advocacy at different levels could improve access to HIV-related treatment.

Instructions:
1. Explain the aim of the activity.
2. Present participants with a definition of advocacy [see previous page]. Share an example of an advocacy strategy on access to treatment at each level - community, national and global.
3. Divide the participants into 3 groups and ask them to brainstorm and list possible advocacy strategies. Ask:
  • Group 1 to focus on community level advocacy.

  • Group 2 to focus on national level advocacy.

  • Group 3 on global level advocacy.

4. Bring everybody back together and ask the groups to present their results. Encourage the participants to ask each other questions and to make comments.
5. Facilitate a group discussion about what has been learned from the activity, based upon questions such as:
  • How does advocacy on one level affect issues at another level?

  • What type of resources are needed for advocacy strategies at different levels?

  • What contributions can different types of organisations make to advocacy work?


Facilitators' notes:
  • Support participants to think creatively about advocacy strategies. Encourage them to think about: What would really make a difference?

  • Support participants to think realistically about advocacy strategies. Encourage them to think about: What can we really achieve?


Example: India
Example: India

At a skills building workshop, NGO/CBO participants identified the following examples of advocacy strategies for improving access to treatment at community, national and global levels:

Community level
  • Advocate for better collaboration between NGOs on access to HIV-related treatment.

  • Advocate for more information about issues relating to treatment and access to HIV-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-related drugs.

  • Advocate for lower international prices for HIV-related drugs.


The facilitator then led a group discussion about what had been learned from the activity. For example, participants agreed that the involvement of people with HIV in advocacy on access to HIV-related treatment was vital at all levels.

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

Treatment Information Sheet
Basic information:
What is the treatment called?
(may have more than one name ... )

How does the treatment help people with HIV?

Using the treatment:
What form does the treatment take and how is it used?
(e.g. lotion to rub on skin, tablets to swallow ... )

How much of the treatment should you use at a time?
(e.g. two tablets, a teaspoon of syrup... )

How often should you use the treatment?
(e.g. whenever you feel the need, twice a day ... )

How long should you use the treatment for?
(e.g. for one week, until the problem gets better, the rest of your life ... )

Do you need to do anything else to go with the treatment?
(e.g. drink lots of water, avoid eating when taking the treatment, eat special food ... )

Effects of the treatment:

Can the treatment have harmful effects? If so, what are they?

What should you do if you suffer harmful effects from the treatment?

What do people who have used the treatment say about it - good and bad?

Obtaining the treatment:

Where can you get the treatment?

How much does it cost, in cash or goods?

Are there any extra costs for using the treatment?
(e.g. fees to the health care provider, buying other supplies such as dressings... )

What will the total costs be for a complete course of the treatment, or (for long term treatment) per month or week?
(e.g. costs for follow up)

What is the total when the cost of the treatment is added to any extra costs?

Is there any other information you should know about the treatment?

Treatment Assessment Sheet
Name of treatment: ..........................................


Technical Factors

How much training is required to provide the treatment?
Low / Medium / High

Can the treatment only be provided by a qualified health worker?
Yes / No / Don't know

Are special equipment, facilities or services required to provide the treatment?
Yes / No / Don't know

Is it easy for the person receiving the treatment to use it?
Yes / No / Don't know

Is the treatment only effective if it is taken in combination with others?
Yes / No / Don't know

Does the person using the treatment need the help of a skilled worker to use it?
Yes / No / Don't know

Would you start the treatment without being sure that you have enough supplies for as long as the treatment is necessary?
Yes / No / Don't know

Can the treatment be delivered easily to a large number of people?
Yes / No / Don't know

Financial Factors

What is the duration of the treatment?
Short-term / Medium-term / Long-term

What is the actual cost for the treatment?
Low / Medium / High

Are there other costs involved in the treatment (such as travel, food and necessary laboratory tests)?
Low / Medium / High

What are the costs involved in delivering the treatment to a sizeable number of people?
Low / Medium / High

Would you start providing the treatment if you didn't have enough money to pay for the full course?
Yes / No / Don't know

Social Factors

How does the community view the treatment?
Positive / Negative / Neutral

What are the social implications for someone who goes for / uses the treatment?
Positive / Negative / Neutral

Is the treatment sensitive to the person seeking treatment? For example, can a sex worker access the treatment?
Yes / No / Don't know

Do cultural beliefs or practices have an impact on the treatment?
Yes / No / Don't know

2.4. Want to know more?
The Greater Involvement of People Infected and Affected by HIV/AIDS. UNAIDS. 2000.
- a report outlining the principles and issues related to the greater involvement of people with HIV

The Involvement of People Living with HIV/AIDS in the Delivery of Community-based Prevention, Care and Support Services in Ecuador - research summary. Horizons - Population Council and International HIV/AIDS Alliance. 2001.
-a report summarising the research results of different aspects in the involvement of people with HIV.

Voluntary Counselling and testing (VCT) - Technical Update. UNAIDS, May 2000.
-a report outlining the technical aspects, background and challenges of voluntary testing and counselling.

Building Partnerships: Sustaining and Expanding Community Action on HIV/AIDS. International HIV/AIDS Alliance, March 2000.
- a report outlining experiences and lessons learned in helping communities and NGOs to develop and sustain partnerships for improving responses to HIV

Pathways to Partnerships Toolkit. International HIV/AIDS Alliance, May 1999.
- a toolkit of practical ways for NGOs and community groups involved in HIV/AIDS to plan and build effective partnerships with other organisations.

AIDS Home Care Handbook. WHO/GPA/IDS/HCS/93.2, World Health Organisation 1993.
- a manual about care and support for people with HIV at home, for health workers and communities, aims to give confidence about people's own ability to provide safe, compassionate and helpful care to people with HIV.

Food for People Living with HIV/AIDS. Luanne Epstein, Network of Zambian People Living with HIV/AIDS 1995.
- a handbook on nutrition and positive living for people with HIV

Collaboration with Traditional Healers in HIV/AIDS Prevention and Care - a literature review. UNAIDS. September 2000.
-an overview of how traditional healers can be involved alongside medical and community care for people with HIV, with examples from various African countries and suggestions for developing collaboration.

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.

To view the whole publication follow this link.

To download this section, complete with graphics, in pdf format (which requires Adobe Acrobat software to read it) follow this link (file size 498 Kbytes).