Mutual reinforcement of AIDS care and prevention
Cross-cutting themes
Importance of community participation
Mobilising domestic funds (public and private)
Mobilising international resources
Training and use of local managerial/technical talent
Experience in various parts of Africa and the rest of the world confirms that it is vital to provide care and support for people living with HIV/AIDS, not only for the sake of the direct beneficiaries but to also help prevent HIV within the wider community. Treatment and can improve quality of life of those living with HIV/AIDS and thus enable them to participate fully and longer in prevention education in the community. This is an important component of the social contract described in the previous section.
Individuals who know they are infected and receive care can break through the denial about HIV by talking with their friends and neighbours and reducing the discomfort associated with the subject. Care providers who look after HIV-positive people demonstrate to others in the community that there is no reason to fear becoming infected through everyday contact, and thus help dispel misguided beliefs about HIV transmission. Providing diagnosis and treatment for tuberculosis and sexually transmitted infections – diseases that are common among people with HIV – also helps decrease their spread among HIV-negative people.
Care thus has important spin-offs for prevention, in much the same way that prevention measures such as voluntary HIV counselling and testing can result in improved access to care. Recognising these interlocking benefits, development assistance agencies and other financers of AIDS programmes are increasingly seeing care and support for HIV-infected people as a powerful tool for expanding the response to the epidemic. An example is voluntary HIV counselling and testing which helps improve access to care, reduce psychological suffering, and helps a person to recognise their own risk behaviour and decide to change that behaviour.
HIV/AIDS and TB prevention and care
There are many practical ways to care for HIV-positive people. Preventing tuberculosis using a readily available drug called isoniazid can extend the life expectancy of HIV-infected people in countries where TB is common, and it is estimated that good tuberculosis treatment can give HIV-positive people who develop TB up to two additional years of life. From all points of view, dealing with TB among people living with HIV is an excellent and cost-effective way to make measurable progress against AIDS.
The double benefit of STI management
Sexually transmitted infections such as syphilis and chancroid are not only harmful in themselves, but also greatly multiply one’s risk of transmitting or acquiring HIV infection. Prompt diagnosis and effective treatment of these infections can thus help reduce biological vulnerability to HIV.
Just as important, health care of this kind provides a widely available entry-point (and in some places, one of the few available entry-points) for preventing both HIV and further episodes of sexually transmitted infection through counselling, condom promotion and IEC messages. Men come more willingly than they would for HIV-specific testing, can be given condoms, and can be encouraged to participate in both individual and partner counselling. Men can also refer the women with whom they have had sex to the clinic. This can be especially helpful because a woman with a sexually transmitted infection often has no symptoms of illness and may therefore not seek care, even though her untreated infection puts her at high risk for HIV as well as for infertility and other ill-health.
A boost to voluntary counselling and HIV testing
Despite its known benefits, VCT remains a low priority in many places. Governments already hard-pressed to cope with what might seem to be "competing" diseases such as malaria and tuberculosis, sometimes question the relative importance of measures that do not involve vaccines or medicines.
Counselling requires both infrastructure and human capacity, and takes time in order to be done properly. Pre- and post-test counselling, some of it delivered to small groups and some one-on-one, cannot be rushed. As well, the counselling delivered at the time of testing should be reinforced by follow-up sessions in order to really result in behaviour change.
On the demand side, seeking counselling and HIV testing is not an easy step to take for many people. Among low-income groups, many people see little point in getting tested for HIV if treatment is inaccessible. This is changing as access increases to some medications that can only be given to people with known HIV infection. For instance, early treatment with isoniazid and cotrimoxazole prophylaxis can give AIDS patients additional months or years of life. If these preventive regimens are made more widely available in developing countries, they will reinforce demand for wide-scale HIV counselling and testing services.
The introduction of rapid HIV tests is another factor that is making VCT easier and more attractive to clients in developing countries. Pre- and post-test counselling and testing results can be offered during a single visit to a VCT centre or clinic – an important consideration in places where taking time off from work or from child care can be difficult, and transportation can take a long time. The widespread problem of people not returning to get their test results (as frequently happens when tests take up to two weeks to return results) and missing post-test counselling is thus avoided. (Note that centralised laboratories remain essential in many testing programmes, and for purposes such as quality control of services, and surveillance).
Home care and community support
In sub-Saharan Africa, community-based programmes are the only practical way to bring health care to many HIV-infected people and support to many AIDS-affected families. Home care is the field par excellence in which civil society has shown both leadership and great creativity. Besides the direct benefits to patients and their families, AIDS care and support programmes have important spin-offs for the rest of the community. They make the epidemic more visible and hence help uninfected people to take the HIV threat more seriously.
People with HIV/AIDS need not only medical care but also support in coping with the unpredictable course of their illness and its impact on themselves and their families. Communities are best placed to identify needy families, vulnerable children and orphans, and develop systems to enumerate and assess the needs of families and children and to determine the extent of problems. The community is also best placed to monitor and maintain contact with children, supervise their activities and prevent child labour and abuse.
Prevention of mother-to-child-transmission
Since the start of the HIV epidemic, it is estimated that 3.8 million children have died of AIDS before their 15th birthday, half a million of them in 1999 alone. Another 1.3 million children are currently living with HIV, and most will die before they reach their teens. The vast majority of these children were born to HIV-infected mothers: the most vulnerable of all populations, they acquired the virus in the womb, around the time of childbirth, or during breastfeeding.
Over nine-tenths of all children worldwide infected before birth or during infancy in 1999 were born in sub-Saharan Africa. Making HIV counselling and testing services widely available so that infected women can decide whether to take preventive drugs during pregnancy is a measure that could save the lives of hundreds of thousands of children while offering broader benefits as well.
Several countries have recently set up pilot projects which effectively reduce HIV infection among children born, and are actively tackling some of the challenges involved. As well as prevention, ways must be found to provide care and support, not just for the HIV-infected mother and her infant but for the other members of her family. This is largely uncharted territory in developing countries, where it will be necessary to create good referral links from mother and child health centres to other facilities and services in the health system and plan ahead for the increased case-load.
The biggest challenge of all will be to expand coverage beyond the pilot projects to reach all HIV-infected pregnant women and their families. As part of planning ahead for this expansion, health systems will have to rise to the considerable challenge of improving infrastructure, training, motivating and retaining the necessary health staff, and improving distribution systems so that HIV test kits, preventive drugs and infant formula are consistently available to those who need them.
Finding alternatives to breastfeeding is an important issue, one which is complicated by widespread problems in ensuring the availability of clean water. This illustrates an important multisectoral aspect of the problem, since it brings in questions of infrastructure and poverty.
Finally, it must be remembered that primary prevention is part of the package.
Examples of Best Practice
Uganda: Same-day test results help extend VCT beyond major cities
Leadership issues summary
Leadership level(s): NGOs and international partners, with increasing support from Ministry of Health
Contribution to success: emphasis on using the most up-to-date techniques (if proven cost-effective) to improve service to clients
Gaps and insufficiencies: insufficient coverage of national territory
Opportunities: NGOs and government are cooperating to scale up coverage to all districts
Uganda’s AIDS Information Centre (AIC) is a Kampala-based NGO that has provided confidential counselling and HIV testing to over 350,000 clients since 1990. Services are provided by AIC staff at hospitals in 20 of Uganda’s 45 districts, and also by mobile AIC units who go to more isolated communities by automobile.
Since January 1997, the AIC has provided same-day VCT services. Previously, clients had to wait two weeks to receive their HIV test results, and 25-30% did not return to get them. Research among its clients confirms that 85% prefer same-day results and 76% are willing to pay more for the rapid service. On average, clients spend two hours at the centre, although the procedure can be completed within 30 minutes. In addition, thousands of HIV-positive and HIV-negative people tested at the Centre have joined the Post Test Club, which not only offers its members health care and other services, but sends them into the community to distribute condoms and spread information about HIV prevention.
Scaling up VCT is the new challenge now being tackled in Uganda. Currently, with financing from USAID, the AIDS Information Centre is working with the Ministry of Health (which is also receiving technical assistance from NORAD) to integrate VCT more consistently into district health services. In addition, financing from the European Union will permit VCT to be provided in Uganda’s northern districts, where it is currently not available.
Zimbabwe: Commercial farms combine care with peer education and condom promotion
Leadership issues summary
Leadership level(s): private sector working with community leaders and NGOs
Contribution to success: willingness and need of private sector to invest resources and involve community; willingness of community to provide support to the initiative
Gaps and insufficiencies: lack of national government support and lack of involvement of other potential partners
Opportunities: existing programme and human resources have potential to help scale up prevention and care services beyond the commercial farms to traditional farming sector (this looks less and less likely, owing to national-level obstacles)
The AIDS Control Programme of the Commercial Farmers Union of Zimbabwe has been working since the late 1980s to reduce the incidence of HIV/AIDS and sexually transmitted infections among commercial farmers, farm workers and their families. The project's 30 coordinators and 135 trainers have trained and supervised approximately 10,000 peer educators, and activities have been extended to 3,500 farms in most parts of the country. The programme distributes approximately 1.5 million condoms per quarter.
Zimbabwe's agriculture sector contributes about 20% of the country's gross domestic product. An estimated 2 million people (including children) live in full family situations on commercial farms where basic infrastructure (housing, water, etc.) are provided by the commercial farmers. The Commercial Farmers Union (CFU) is the coordinating body for Zimbabwe's commercial farming sector, which groups 73 farmers' associations within the eight regions of the country.
Trainers of peer educators tend to be middle managers on farms, storekeepers, farm and rural school teachers, police or telephone operators. Peer educators are recruited on the basis of the respect they hold within their communities, and their ability to communicate. Trainers and peer educators are all volunteers. Training materials and curriculum are provided by the Family AIDS Counselling Trust (FACT) in Mutare. Both trainers and peer educators provide home care and counselling, with the trainers monitoring the quality of work provided by the peer educators.
The Union’s AIDS Control Programme has a decentralised structure, with central administration comprising only a project manager and two deputy project managers and the CFU's chief accountant and book-keeper. Administrative costs are kept low by maintaining the smallest central organisation possible, and "borrowing" the CFU's own accounting and other services. The coordinators of the project are farmers' wives who volunteer their time and energy to organise training courses, and to distribute HIV/AIDS literature and condoms using their personal cars, farm lorries, and telephones and faxes.
Until recently, the commercial farmers were taking increasing responsibility for providing resources and food for sick farmer workers. Unfortunately, the programme has been seriously disrupted by a wave of social disturbances, and little progress has been made in maintaining, let alone extending, its activities.
Côte d’Ivoire: Care and prevention in a poor urban setting
Leadership issues summary
Leadership level (s): religion-based NGO working with local community and particularly with persons living with HIV/AIDS
Contribution to success: emphasis on involving persons living with HIV/AIDS in running programme; ability of NGO to create links with local health care institutions and other NGOs
The Centre for Socio-Medical Assistance (Centre d'Assistance Socio-Médical - CASM) is an outpatient clinic for people living with HIV/AIDS in Abidjan, that also has a strong prevention component. Many of the people it serves are indigent, have little family financial support, and are severely stigmatised by their family, neighbours and even health officials. The Centre is operated by HOPE Worldwide (an international, faith-based NGO) in collaboration with the Ministry of Health, the National AIDS Programme, and the local teaching hospital.
Along with providing basic treatment, the Centre makes referrals from and to other local care providers, support groups, and a hospice. It employs two counsellors and a psychologist, and has a team of approximately 20 community agents that provide home-based support for persons living with HIV/AIDS from the centre. On average, 25-30 new patients are referred to the CASM every month. Their average age is around 25. The ratio of men to women referred is now 1 to 1 (in the first few years it was almost 4 to 1).
The project’s prevention work has sought to include persons living with HIV/AIDS in its programming and execution. In all, prevention programmes have educated over 200,000 people over the past 5 years.
In 1994, CASM helped create the area's first support group for persons living with HIV/AIDS, the Club des amis ("Friends’ Club"). The Club des amis is now a fully fledged association in its own right with over 300 members and has itself helped create three other associations for persons living with HIV/AIDS. Daily, a core of club members supports clinic staff with counselling and support issues, fulfilling their desired role as peer educators and counsellors. Club members are also actively involved in joint AIDS prevention programmes (including participating in the centre's theatre group, whose name, Kazenze, means "staying together").
CASM and the Club des amis collaborate on peer education efforts, which have helped increase AIDS awareness at clinic level. For example, peer support groups have aided problem-solving when it comes to psychosocial issues that may inhibit behaviour change. The use of peer counselling has made AIDS education more acceptable to patients who visit the clinic.
Uganda: Innovative social marketing of STI treatment kit for men reinforces HIV prevention
Leadership issues summary
Leadership level(s): national health authorities and private/informal sector
Contribution to success: openness of health authorities to technical innovation, and pragmatism in working with available distribution systems even if these are semi-formal
Gaps and insufficiencies: this is a pilot project, lacks resources to scale up
Social marketing of "Clear Seven," a pre-packaged treatment kit for male urethral discharge syndrome (MuD), has proved a successful strategy for treating sexually transmitted infections and preventing HIV infection. Besides the kit itself, this pilot programme has taken the innovative tactic of training Uganda’s informal "drug shops" to sell the antibiotics without a prescription.
The kit consists of a 7-day "blister pack" of one 500-mg tablet of ciprofloxacin, fourteen 100-mg tablets of doxycline, seven condoms, three partner referral cards, and a multilingual instruction and information leaflet. The kit is packaged in a sealed cardboard box bearing the expiry date and the recommended retail price of US$ 1.35 (this includes a subsidy, since full production cost is US$1.50).
The kit was designed not only to promote MuD treatment compliance (i.e., to ensure people are fully cured by taking the full course of the antibiotics, rather than stopping when the symptoms clear up), but also to support condom use, strengthen partner referral, and also provide health education for risk reduction.
The Clear Seven distribution strategy builds knowingly on existing distribution networks that, despite numerous problems, are widely used by common people. Improving distribution through drug shops is crucial to this strategy. These are small retail outlets that are licensed to sell over-the-counter drugs. Though prohibited by law from selling antibiotics, many will stock and sell them anyway. (Only pharmacies, 90% of which are located in the capital Kampala, are authorised to sell antibiotics.} Drug shops therefore satisfy an unmet demand for health services and serve as the first point of health care for the majority of people with a sexually transmitted infection.
The traditional approach to these drug shops consisted of tightening drug laws and cracking down on offenders. However, realising that the social-economic necessities which contribute to their existence require long-term planning to solve, the Ministry of Health granted permission to utilise these outlets as points of delivery for effective STI drugs. Drug shop attendants were trained in proper diagnosis and management, and were thus prepared to support the Clear Seven initiative.
According to the Ministry, the results of Clear Seven have been encouraging. The cure rate for MuD increased from 46% to 87% in the districts where the pilot project was run, and treatment compliance has increased dramatically. Before the Clear Seven project, under 9% of STI patients followed the national treatment guidelines for MuD.
Uganda: Trials of the antiretroviral nevirapine
Leadership issues summary
Leadership level(s): national and foreign researchers, with support of private sector and approval of national government
Contribution to success: willingness of government to permit trials to go ahead despite some political opposition
Gaps and insufficiencies: still at trial level; will require considerable investment in health infrastructure in order to be scaled up nationally and applied in other countries
Opportunities: excellent potential for scaling up due to low drug cost and low complexity of treatment
The search for more affordable ways of helping HIV-positive women have uninfected babies is a crucial task given the high rates of mother-to-child transmission in Africa. Perhaps the most promising development in this respect was the trial called HIVNET 012, recently undertaken at Mulago Hospital by researchers from Makerere University in Kampala and Johns Hopkins University in Baltimore.
The trial involved giving a single dose of the antiretroviral drug nevirapine to the mother at the onset of labour, followed by a dose to her infant within 72 hours of birth. This was compared with the efficacy of a multi-dose course of zidovudine (ZDV, or AZT) which has till now been regarded as the most cost-effective preventive regimen available to developing countries. After reviewing the results, a group of experts from WHO, UNICEF, UNFPA and UNAIDS Secretariat agreed that the nevirapine regimen was effective in reducing transmission to infants, while having the additional benefits of being cheap and simple to administer.
The affordability of the nevirapine regimen can be seen in Uganda’s calculations of the costs of buying enough of the drug for all HIV-positive pregnant women in the country. In contrast to the cost of supplying zidovudine treatment at US$ 21,450,000 per year, the cost of nevirapine coverage would be US$ 640,000.
Nonetheless, the low price of nevirapine must not blind decision-makers to the fact that effective prevention of infant infections is not simply a matter of finding "the right drug at the right price". Although the drug used is a substantial component of the intervention, many others are independent of the particular drug used. These include the infrastructure of voluntary and confidential HIV testing, many aspects of antenatal and postnatal care of women, psycho-social support to HIV-infected women, the provision of alternatives to breastfeeding, and the follow-up of babies to determine their HIV infection status.