Issue Contents    Improving access to care Activity Action for care Making care affordable Making drugs accessible Introducing antiretroviral therapy What is antiretroviral therapy? Starting therapy Using antiretroviral therapy Changing therapy Checklist for Health Workers Antiretroviral drugs Definitions Resources Also in this issue   A four-page insert on reducing mother-to-child HIV transmission

In this Issue   Improving access to care Page 2 Making care affordable Page 4 Making drugs accessible Page 5 Introducing antiretroviral therapy Page 6

Good care will vary depending on local needs and resources. People who have HIV, or who are at risk of HIV infection, should have access to a basic care package which includes:

	voluntary counselling and testing services
	a good diet made up of foods that are locally available and affordable
	user-friendly and affordable local health services, including community or home-based care, and an effective referral system between these services and regional hospitals
	essential drugs for the treatment of HIV-associated infections and relief of pain
	information on the range of HIV care services.

This basic care package should be available to people at all stages of HIV, including those who are uninfected but at risk. Individuals, HIV support groups or organisations may need to advocate to make this care package available. Advocacy means persuading those with power, such as governments or commercial companies, to change their policies or practices to meet the needs of a particular group.

Key principles

The following can help health planners to make sure people in their area have access to a basic care package.

Prioritise care services. 
This means involving HIV-positive people and health workers in finding out about local needs and resources, deciding which needs are most important and the best way to meet these needs (see activity: 'Action for care'). This involves looking at the long-term costs and benefits of different approaches to care, including prevention activities and treatments for HIV-associated illnesses and HIV. It may also involve advocacy at local, national and regional levels.

Promote good quality health care. 
This includes making sure that health services have basic drugs and equipment, for example, simple effective antibiotics including TB drugs, antifungals, antiseptics, analgesics, gloves and disposable syringes, as well as basic diagnostic equipment. It also includes having skilled staff. Cost is an important issue, so developing cost-recovery systems, such as subsidised pharmacies can help (see page 4). Good quality health care also needs efficient supply and distribution systems for drugs and equipment, monitoring and follow-up of care and referral systems. Developing national guidelines for managing HIV-associated illnesses can help promote good quality health care, for example, developing treatment protocols which can be implemented at all levels from hospital to community (see page 3: 'Developing national guidelines').

Promote collaboration between different groups that provide care. 
Collaboration between health centres and hospitals, traditional health systems, community-based organisations and HIV support groups helps to ensure a 'continuum of care'. This means providing care for people at all stages of HIV, from prevention to palliative care and at local, district and national levels.

Promote voluntary testing and counselling. 
This is very important. If people know that they are HIV positive early, and receive good counselling, it can encourage them to access available care, for example, by joining an HIV support group, eating healthy food, and getting early treatment for illnesses. People who test HIV negative and receive good counselling have a better chance of reducing their risk behaviour and staying negative.

Involve people with HIV in planning their own care.
The more that people feel they can make informed choices about their own health care, the more likely they are to stay healthy. People need to be encouraged to voice fears and concerns about treatment and to share in decisions about their care. Involvement of people with HIV and their carers is essential when advocating for improved access to care.

Provide regular training for health workers. 
Training should cover how to diagnose HIV-associated illnesses early, how to treat them and when to refer people to specialist services.

'To be informed is empowering. It has enabled me to manage living with the virus. I know how to take care of myself. I know my body, I understand it. I know where to seek support if I need it. I know what kind of support I need. I feel courageous to ask questions. Even to protest. I know what are the choices for me. And I am capable of making careful considerations before making any decisions. All these wouldn't have happened, or might take an awfully long time to happen, if I wasn't informed.'  Suzana Murni, Echidna, no. 19, 1998

 
Ensure that health services are user-friendly and physically accessible. 
People are more likely to use health services if the staff are friendly and communicate well. Training in communication skills, for example using role play, can help. Health facilities must be near enough for people to visit them. This can mean providing facilities for people with special needs, for example, services to treat and prevent sexually transmitted infections near to where sex workers work.

Reduce stigma and discrimination against people with HIV. 
In many places, people who are thought to have HIV are feared and discriminated against. Stigma can be so strong that even people who work for HIV-related organisations do not tell their colleagues that they are HIV positive. Some people have even been killed for saying publicly that they have HIV. One way stigma can be reduced is through education. When people understand what HIV is, and how it is transmitted, they are less likely to discriminate.

Provide information. 
Some people call information 'the cheapest form of therapy'. Health workers and people affected by HIV need up-to-date locally-relevant information on a range of issues, (see box above). For example, carers need information to help them understand the progression of HIV and to know what advice to give; people with HIV need information to encourage them to seek early treatment for common illnesses, such as TB. Health planners and community-based groups need to think about what information is needed, what is available and how information gaps can be filled. 

Dr Elly T Katabira, Department of Medicine, Mulago Hospital, Makerere University Medical School, Kampala, Uganda.

Activity Action for care AIM To make action plans to improve access to care, based on local needs and resources TIME Half a day or one day PARTICIPANTS People with HIV, health care providers, carers and families, health educators, community leaders   Get people together in small informal groups and ask them to discuss:  what are the main care needs in our community? what are the care needs of different groups, such as young children and orphans?  what helps people access care to meet these needs?  what are the main barriers to meeting these needs? Ask each group to write or draw what their group thought were the most important care needs on large pieces of paper or a blackboard. Ask the groups to come together and discuss the results and then to 'vote' for what they think are the most important care needs (probably 3-5). Ask the large group to discuss:  what are the main barriers to meeting the priority needs?  how can these be overcome?  what resources are needed?  what resources are available locally? what can be done to get other resources? Finally, ask participants to agree:   what needs to be done  what can be done now  who will do it  by when  what to do next. Source: 'Towards the healthy women counselling guide' UNDP/WHO

Developing national guidelines on HIV care

Many health ministries, such as the Ministry of Health in Uganda, have developed national guidelines. These provide advice on how to manage HIV, how to make clinical care and referral systems efficient, and how to integrate HIV care activities into existing community health programmes. National guidelines are for all health care workers, including traditional healers, particularly those working on HIV in health facilities, the community and in training institutions. They are also for HIV-positive people and support groups. National guidelines should cover: 
 

	clinical management of people with HIV, for example, guidelines on diagnosis and treatment of HIV-associated infections
	access, cost and laboratory requirements, follow-up and monitoring of antiretroviral therapy
	other therapies, such as physiotherapy, and their roles in the management of people with HIV.

Guidelines should also include advice on:
 

	counselling people with HIV, their families and other carers
	home care - involving the family and the community through volunteers and existing services
	referral systems between health service and with other services.

'Sangeta had just given birth to a son. She was delighted. But when her husband came to see her, the doctor told him Sangeta had tested positive for HIV. She had received no counselling. She did not know about HIV or that she had been tested for it. After her diagnosis, her husband would not let her touch their son, and the medical staff left her alone.'
 
This is a common story. Often, the situation is made worse by lack of access to appropriate and affordable care. YRG CARE (Centre for AIDS Research and Education) in Chennai, India, is addressing this problem. It runs an integrated care programme, which includes voluntary counselling and testing and hospital and home-based care services. YARD CARE has developed several strategies to ensure that everyone who needs care can afford it. These include:
 
Two different fees for the HIV test. 
People on high incomes pay Rs100 (US$2.30) for an HIV test. Those who can afford it are also for donations. These payments help the centre subsidise the cost of the test for people on a low income, who pay Rs50 (US$1.15). People who test negative are encouraged to continue to be involved with YRG CARE and to donate time or money for care work.

Free counselling service.  YRG CARE provides free pre-and post-test counselling. Different charges for other care services.  These are based on income. Very poor people are not charged. Other people are charged a quarter, half or the full cost of the services. YRG CARE receives donations in money or kind from organisations, groups and individuals, which help it subsidise the cost of services for those who cannot pay.

 
Subsidised pharmacy. 
YRG CARE reduces the cost of the drugs in its pharmacy by: 
 

	buying drugs direct from manufacturers and wholesalers
	getting free samples from manufacturers, and drugs through the drug component of its clinical research projects and from overseas hospitals
	getting unused drugs from YRG CARE's hospital and community-based patients.

 
People on higher incomes pay the full price for the drugs. This income, as well as money raised from businesses, is used to subsidise reduced prices for other users. The pharmacy does not sell antiretroviral drugs because they are too expensive.

Subsidised meals. 
YRG CARE runs a diet centre, which provides nutritious food. Staff and most relatives pay the full cost for their meals and this income is used to subsidise the cost of meals for other people. YRG CARE also receives food donations from hotels and offices in return for HIV-awareness training. 

Dr Suniti Solomon, Director, and AK Ganesh, Project Manager, 
YRG CARE, No. 1, Raman Street, T Nagar, Chennai 600 017, India. E-mail: yrgcare@vsnl.com

Definitions Essential drugs are safe, affordable and effective drugs that satisfy the health care needs of the majority of the population. Most countries have national essential drugs lists that include drugs for the common illnesses in their particular country. Essential drugs lists usually list the generic name of the drug. A drug's generic name is its official name. Most drugs also have a commercial name (brand name), which is chosen by the manufacturer or distributor. Drugs that are sold by a generic name are often cheaper than drugs sold under a brand name. Many countries need to update their essential drugs lists to include drugs for common HIV-associated infections.

Drugs for HIV-associated infections in Burkina Faso This is an example of a drugs list developed with people with HIV in Burkina Faso. It includes drugs for common HIV-associated diseases in that country. Lists developed in other countries will vary according to local needs and availability.
COMMON DRUGS HIV-ASSOCIATED ILLNESSES/SYMPTOMS	DRUGS
Gastroenteritis	Anti-diarrhoeal drugs, such as loperamide hydrochloride
Diarrhoea	Oral rehydration salts
Vomiting	Anti-nausea drugs, such as metoclopramide
Intestinal parasites (worms)
Intestinal parasites (micro-Metronidazole organisms such as giardiasis, amoebiasis)	Mebendazole
Chest infections (excluding tuberculosis)	Cough linctus, antibiotics according to local needs, such as ampicillin, co-trimoxazole
Skin problems (itching, herpes zoster,  pus-producing infections)	Gentian violet, antiseptic solution, antihistamines such as chlorpheniramine, antibiotics such as flucoxacillin
Fever (malaria)	Anti-malarials, such as chloroquine, quinine
Fever (general)	Anti-pyretics, such as aspirin, paracetamol
Candida (thrush)	Anti-fungals, such as nystatin, ketoconazole, miconazole
Haemorrhoids	Anti-haemorrhoidal suppositories (such as the brand Anusol)

Introducing antiretroviral therapy

Many people want to know about antiretroviral therapy, and some people even have access to it, so information on it is important.

 
Antiretroviral therapy

Definitions CD4 count is the number of CD4 cells in a cubic millimetre of blood. CD4 cells help to protect people from getting infections. HIV attacks and destroys CD4 cells. A CD4 count in a healthy, HIV-negative adult is usually 600-1200 CD4 cells per cubic millimetre of blood. The CD4 count of most people with HIV usually falls over time. If the CD4 count drops below 200 cells per cubic millimetre of blood, there is a high risk of serious infection.  Viral load is the amount of HIV that can be measured in the blood. If the person has not developed symptoms, a viral load higher than 100,000 per millilitre of plasma (the fluid part of the blood) is considered to be high, and below 10,000 is considered low. An undetectable viral load means that it is too low for the test to be able to measure it with standard techniques. Resistance to an ARV means that HIV in the body has changed so that the drug no longer works against it. People often develop resistance to ARVs because they stop using them, do not take them regularly or in complete doses. Cross resistance means that HIV is resistant to more than one ARV. This can include drugs that the person has not used. For example, if someone develops resistance to indinavir, they will also be resistant to ritonavir.

 

What is antiretroviral therapy?

Antiretroviral (ARV) therapy is treatment with drugs called antiretrovirals (ARVs) that fight the HIV virus. ARV therapy can help people with HIV stay healthy. But at present, ARVs have to be taken for life, are expensive, often difficult to take and can cause severe side effects. Also, ARVs are becoming increasingly available in many countries, but many people are not using them properly. This is dangerous as resistance (see definitions) can develop quickly and side effects are common. 

Monotherapy (treatment with only one ARV) is used to reduce the risk of HIV transmission, for example, from needle-stick injuries, or from mother to child. Monotherapy is not used to treat people with HIV, because resistance soon develops.

Combination therapy (treatment with two or more different ARVs) is used to treat people with HIV. This is because different ARVs fight HIV in different ways, and are therefore more effective when used together; it is also harder for HIV to develop resistance to ARVs when they are used in combination. 

Three main types of ARVs are currently in use in combination therapy: nucleoside analogues, non-nucleoside reverse transcriptase inhibitors, and protease inhibitors (see table). There are many possible combinations of ARVs, but some should not be used together because they react with each other. 

ARV therapy for children also appears to be effective, but the dosages vary for each child and more information is needed about side-effects of therapy for children.
 

Starting therapy 
ARV therapy should only be given to people who have tested HIV positive. Some doctors prefer people to start therapy early, when the immune system is less damaged and viral load is still relatively low. (Viral load can be very high immediately after infection with HIV, but it usually drops after a few weeks.) Other doctors prefer to start therapy later because of the cost of ARVs, and because resistance is more likely to develop the longer someone is taking the drugs.
 

Using antiretroviral therapy 

Following instructions
This is also known as adherence or compliance. Antiretrovirals must be taken according to strict instructions. These can be difficult to follow. Several different pills must be taken each day at different times, with different food or drinks. The pills can cause unpleasant side effects. ARVs are expensive (three drugs in combination can cost US$8,000-20,000 per year). Many people cannot afford ARVs regularly or do not have a regular supply, so that they have to stop treatment while they wait for more ARVs. sometimes people give their drugs to family members or friends because they think they need them more. Multi-drug resistant HIV is already appearing, largely as a result of non-adherence. The tuberculosis experience has highlighted the need for community-based support for people who are taking long-term treatment. A similar approach might help improve adherence for people on ARV therapy, although it is more complex.

Side effects
Many people experience unpleasant side effects when they start antiretroviral therapy, such as vomiting, diarrhoea, and fever. Some side effects, such as diabetes and pancreatitis, may be life-threatening. People who experience these may need to change the drugs in their combination.

Reactions with other drugs
Some antiretrovirals also react with other drugs and stop them working as well. For example, protease inhibitors react with the tuberculosis drug rifampicin.

Checklist for health workers Before prescribing antiretroviral therapy   Check the national drugs policy. Are ARVs licensed in your country?  Make sure you have up-to-date information on ARVs - this information changes very frequently. Make sure the patient has tested positive for HIV.  Make sure the patient will have access to a long-term supply of the drugs in their combination. Discuss with the patient how they will pay for ARV therapy. Can they afford it? Will there be enough money for food for other household members? Do other household members have HIV and need ARVs? Discuss the various combinations available in detail with the patient. What combinations will they use if they develop resistance to the first combination of drugs?  Explain clearly the importance of adherence. Discuss some of the problems people have with adherence. Spend as much time as possible with the patient to help them decide the best time to take the tablets each day. Write or draw a drug and diet chart showing when and how to take the drugs, food and drinks. Ask the patient to practise using this chart before actually starting to take the ARVs.  Talk to the patient about side effects associated with the drugs. Discuss how to make it easy to start treatment, such as taking time off work in case side effects occur.  Discuss a nutritious diet.  Managing antiretroviral therapy    Monitor patients regularly for side effects and for resistance to the antiretrovirals, preferably using tests for CD4 and viral load counts. Change the combination if side-effects are severe or if CD4 and viral load indicate that resistance is developing. Do not add an antiretroviral drug to a treatment that is failing. It is preferable to change at least two of the drugs.  Promptly treat HIV-associated infections.  Encourage patients to ask questions and tell you how they are feeling. Inform them of any support groups or other forms of support that are available. Source: 'Towards the healthy women counselling guide' UNDP/WHO

Ways to work with men   Men's sexual health matters is a new publication from Healthlink Worldwide that provides practical information for people who are working with men on sexual health or intend doing so. It looks at ways of involving men in discussions about sexual health and sexual responsibility at different ages and in many settings. It contains exercises, role plays, illustrations and suggested resources. Single copies free to individuals and indigenous organisations in developing countries; £10/US$20 elsewhere.

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