There are two projects in this programme area.
It is estimated that church health services provide at least 50% of health services in Africa. However, their response to the opportunities provided by ARVs/ARTs has been slow or negligible. The apparent inability of the churches, both as community leaders through their priests, pastors, and congregations and as managers and owners of church health services, to take their full part in the response to ARVs/ARTs is hindering the positive impacts of these new treatments.
In response to this, EPN has designed the 'Increasing Access to ARVs/ART in Africa' project.
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The inital phase of the project is focused on Component Objective 3.2 of the logical framework, in developing and testing research tools in three African countries (Kenya, Rwanda, and Burkina Faso) that will be used to establish the current situation and needs prior to developing tools to strengthening the capacities of church leaders and church health services. The research is expected to be rolled out across at least a further seven countries.
EPN is committed to:
An increase in positive health outcomes for all those infected and affected by HIV/AIDS.
The capacity of church leaders and church health services to deal with HIV/AIDS treatment and related organisational management issues is increased in target countries.
(Outputs, or the expected outcomes of activities that contribute to the purpose of the project)
1.1 Church leaders to receive correct and targeted information on treatment issues and antiretroviral therapy (ART) specifically, either directly or through existing communication systems.
1.2 Training of trainers is undertaken to increase church leaders’ skills in the management of church health services and develop an understanding of the role that ART plays in the management of HIV/AIDS in order that they can give relevant support to either the patient as a member of their community or to the hospital management as it tries to make this service available.
1.3 A significant number of church leaders to become agents for change, in both their communities and their wider social and political environments.
2.1 Church health services receive correct and targeted information on treatment issues and ARTs specifically, either directly or through existing communication systems.
2.2 Training of trainers is undertaken to increase the capacities of church health services in providing quality of treatment and access around ARTs.
2.3 A significant number of church health services become effective providers of ARTs.
3.1 Knowledge management, including identification of key information and provision of online information analysis and evaluation.
3.2 Country-specific start-up, including identification and consultation of partners, starting point analysis, and country-specific networking activity.
Activities
3.2.1. Identification and consultation with potential partners.
3.2.2. A starting point analysis of the current situation, needs, indicators, and baseline readings.
3.2.3. Inter-denominational partnerships and forums established in each country with a 2-day meeting for 20 participants for dissemination of lessons learned, scaling up of best practices, and networking.
3.3 International networking support activities, including information and experience exchange and international advocacy representation.
3.4 Lesson learning, exchange, and response.
3.5 Supporting change, through project management.
From the original programme design paper, several activities were identified as the focus of the first phase, the starting point analysis project.
This included the development and testing of key methodologies and tools so that a manual could be developed that allows efficient and effective ‘roll out’ of the EPN HIV programme in other countries. The manual has been fully tested in Kenya, Rwanda, and Burkina Faso.
The project manual covers the following areas:
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The starting point analysis and the baseline study are important for work in each individual country, while the cumulative results are important for understanding general trends around ARVs and PMTCT message management across Africa. Therefore, a standard methodology will be used in each country in order to discover local pictures, and these in turn will be analysed across countries and be reported on to a wider audience as an output from this programme.
This includes the development of wider institutional resources and lesson learning activities that are required by the project as a whole. This includes:
All those involved in the original research and invited participants are brought together to take part in a meeting that reports on the results of the initial study and looks at a way forward for work in their country.
This report presents the summary of the findings and the recommendations resulting from the starting point analysis research carried out in Kenya in May 2004. Work included a desk review, 12 focus groups, 21 priority interviews, and 23 open-ended interviews. Locations included: Nairobi (inner urban and outer rural areas), Kitui, and Maua.
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“Of 10 average people with a need for ARVs, at least half will fear the stigma so won’t take them,
one or two will be afraid of the side-effects, and none can afford them.”
—Focus group participant’s conclusion.
“Limited knowledge and negative attitudes towards ARVs on the part of health workers and patients were the main limiting factors to ART uptake… Community education is also essential to ensure adherence, dispel unrealistic expectations, and avoid increasing risk behaviour.”
–Attawell K, Mundy J (2003) Provision of ART in resource-limited settings: a review of experiences up to August 2003. DFID/Health Systems Resource Centre.
Consultants for EPN:
While there is a widespread response to antiretroviral drugs (ARVs) and prevention of mother-to-child transmission (PMTCT) treatment across Kenya, there is still room for improvement in the integration of ARV messages and services, in particular in the response of churches and church health services (CHSs). There is much to praise, but equally much to worry about—some churches reject ARVs and few leaders understand their role in treatment literacy. Kenya can be both a focus for an improved response by churches and CHSs and a source of experience of successful activities.
Both diversity and pluralism are welcome components of any society. However, in Kenya this also means that parts of the media are free to spread rumour and misunderstanding and some churches are free to take extreme and unhelpful positions. Addressing these differences, while maintaining a commitment to diversity and pluralism, is a major challenge.
It is generally thought that there is spare capacity in the area of voluntary counselling and testing (VCT) because too few people take the test. This often means that people do not then go on to access ARVs and, even if they do, it is often too late to make a difference. The advent of access to ARVs changes the ramifications of VCT, but awareness of this change needs to be increased among counsellors, community leaders, and individuals. There is therefore a need for much more encouragement towards VCT.
UN experts estimate that 9% of Kenya's 30 million people are infected with the virus. The government says 50–60% of bed space in hospitals is taken up by people with AIDS-related diseases.
Although the prices of ARVs have dropped substantially over the years, from about KShs. 15,000 (US$ 185) four years ago to KShs. 3,000 (US$ 38) per month (at the time of study), they still remain beyond the reach of many Kenyans. More than half of Kenya's population live on less than US$ 1 per day and struggle to afford food, medicine, or decent housing. While continuing price drops are welcomed as they increase the numbers of people who can afford them, ARVs remain out of reach for the poorest.
By the end of 2003, an estimated 13,000 people in Kenya were on ART; only 3.5% of the total number of people estimated to need ART.
| Patients Started | Current Patients | ||
| Central Province | ||||
| Kijabe Hospital | 150–170 | (Feb 04) | 105 | (Feb 04) |
| Kikuyu Hospital | 86 | (Feb 04) | 67 | (Feb 04) |
| Nazareth Hospital | 300 | (Feb 04) | 140 | (Feb 04) |
| Mwea Hospital | 30 | (Feb 04) | 24 | (Feb 04) |
| Gaichanjiru Hospital | 10 | (Aug 03) | ||
| North Kinangop Hospital | 40 | (Aug 03) | ||
| Mathare Hospital (Nyeri) | 17 | (Feb 04) | ||
| Naro Moru Health Centre | 32 | (Feb 04) | 17 | (Feb 04) |
| Mugunda Clinic | 30 | (Feb 04) | ||
| Tumutumu Hospital | 100 | (Feb 04) | ||
| St. Mulumba Hosp (Thika) | 42 | (Feb 04) | ||
| Mary, Help of the Sick (Thika) | 6 | (Feb 04) | ||
| Eastern Province | ||||
| Mutomo Hospital | 18 | (Feb 04) | 9 | (Feb 04) |
| Bishop Kioko Hosp (Machakos) | 35–40 | (Feb 04) | ||
| Cottolengo Hospital (Meru Cent) | 20 | (Feb 04) | ||
| Nkubu Hospital | 52 | (Feb 04) | 37 | (Feb 04) |
| Maua Hospital | 80 | (Feb 04) | 60 | (Feb 04) |
| Chogoria Hospital | 289 | (Feb 04) | 158 | (Feb 04) |
| Nairobi | ||||
| Coptic Hospital | 1400 | (Feb 04) | ||
| St Mary's Hospital, Langata | ||||
| Mater Hospital | 250 | (Aug 03) | ||
| Milimani SDA Clinic | 10 | (Feb 04) | 8 | (Feb 04) |
| Nyumbani Children's Home | 70 | (Feb 04) | ||
| Nyanza Province | ||||
| St Monica's Hospital, Kisumu | 69 | (Feb 04) | 36 | (Feb 04) |
| St Camillus Hospital, Karungu | 6 | (Aug 03) | ||
| St Joseph Hospital, Migori | 36 | (Feb 04) | 28 | (Feb 04) |
| St Joseph Hospital, Nyabondo | 8 | (Aug 03) | ||
| SDA Hospital, Kendu Bay | 25 | (Aug 03) | ||
| Rift Valley Province | ||||
| Tenwek Hospital | 20 | (Feb 04) | ||
| Litein Hospital | 67 | (Feb 04) | 42 | (Feb 04) |
| Nanyuki Cottage Hosp. | 28 | (Feb 04) | 10 | (Feb 04) |
| St. Joseph Hosp, Kilgoris | 11 | (Aug 03) | ||
| Kitale AIDS Programme | 9 | (Nov 03) | 8 | (Feb 04) |
| Western Province | ||||
| Lugulu | 90 | (Feb 04) | 66 | (Feb 04) |
| St. Mary, Mumias | 54 | (Feb 04) | 19 | (Feb 04) |
| St. Elizabeth, Mukumu | 181 | (Feb 04) | 69 | (Feb 04) |
MEDS started stocking ARVs in July 2001, and generic ARVs in June 2002 (even while special authorization from Ministry of Health for formal registration of generic ARVs was still being processed). MEDS supports ART in over 40 mission hospitals. MEDS has distributed Nevirapine donations on behalf of the Ministry of Health since July 2002. Only six mission health facilities have ordered this product; consumption is well below anticipated levels.
There has been a progressive fall in prices; from a high of KShs. 60,000 per month for triple therapy before July 2001, to KShs. 6,000 per month as of June 2001; this enabled MEDS to consider stocking ARVs. The price fell further to KShs. 3,000 per month in June 2002, with availability of generic ARVs in MEDS; this led to an immediate three-fold increase in ARV purchases from MEDS.
In Kenya, five priority interviews, 10 open-ended interviews, and 2 focus groups took place. Church leaders are defined as any person with a regular role in the administration or implementation of church activities—from Archbishops and Bishops, to Pastors and Reverends, and lay workers and church-related NGO staff. An analysis of the interviews brought out the following results.
1. In rural areas, the distance to a clinic and the cost in money and time to reach a clinic were seen as major obstacles to VCT and ARVs. Across all areas, it seemed that a combination of the following forces explained the main obstacles to VCT and ARVs:
There was no particular trend in the prioritisation of these issues. However, the same issues were raised in each focus group. It was generally agreed that people fear the stigma of the VCT so don’t take it, and certainly not until they either want to get married or are really ill.
2. All the churches used messages around immoral behaviour to try and stop the spread of HIV. Some church leaders did not seem to be able address the issue of HIV infection not relating to an individual’s immorality, the issue of forgiveness, nor encouragement to have a VCT and the ARVs. Seminaries producing tomorrow’s church leaders are under-resourced on the issue of ARVs and are not covering ethical debates or clinical information on ARVs.3. People have a range of opinions and hold many myths—the most commonly expressed were:
4. Discussions are dominated by fear or a discussion of side effects. On the issue of side effects, the discussion revolves around “why do people still die even when they are on ARVs?” and “ARVs kill don’t they?”
5. Although not universal, the majority felt that the church contributes to stigma more than it reduces it. Stigma is worst in the family—they wont sit next to you; then there is gossip among people at church—church could do more to talk about these things, as it often talks about how families and individuals should behave.
6. While all groups had heard of ARVs, they were not aware of, or showed confusion about, nutrition, the length of time taking ARVs, side effects, passing it on, etc. Clearly, knowing ARVs exist is not enough to address behaviour, myths, and misunderstandings.
7. All those who were on ARVs stated that access to food is the main problem, so they feel sick when they take their ARVs and so they want to stop the treatment or cannot take them every day.
8. The poorest women might sell them to feed their children—the children are the priority.
9. The American/white agenda is often raised as an issue. People believe that the Americans are planning to kill them through providing the ARVs, which are laced with the virus itself.
10. Some believe that the ARVs, instead of making them feel better, increase pain in the body and make a person more sick. In addition, they believe that traditional herbal medicines are better than ARVs as they also have a nutritional value.
11. Women talk a lot of the problem of men—who throw them out if they have HIV without getting their own test; who won’t let them go for VCT; who won’t let them take PMTCT because if they had to then the husband would throw them out. With ARVs, the gender problem is not related to the power to say no to unprotected sex, but a much broader range of issues, which the church could deal with.
“Stigma is the issue, poverty is the problem”
–Participant on why people don’t go for VCT or take ARVs.
A feedback meeting was held in Nairobi, Kenya, from 9th–11th February 2005, as part of work to increase the capacity of church leaders and church-related health services to respond to the massive challenge of HIV/AIDS treatment. The results of research undertaken in Kenya in May 2004 to identify starting points was fed back to a group of 42 people from churches, church health services, NGOs, and government organisations.
The meeting aimed to feed back the research results and also develop ideas and commitments to interventions that could be made in the future to increase access to ARVs through the church health services and with the support of the churches. Thus the meeting included elements to build capacity in project design methodologies for participants.
In keeping with the need for greater collaboration between ecumenical bodies, the participants from EHAIA and EPN discussed and agreed that the feedback meeting provided potential areas of collaboration where the different strengths of the two networks could be tapped. It was agreed that EHAIA, because it has a strong link with church leaders, would facilitate moving forward issues that are strongly linked to church leaders. At the same time, EPN would utilize its strong links to church health services to encourage closer interaction of CHS with church leaders. This has been clearly highlighted as a need in the research. This would, in effect, assist EPN’s effort to bring the issue of treatment literacy to these important groups. Both organisations (EHAIA and EPN) will share information about appropriate forums where issues of treatment literacy can or should be elaborated so that every opportunity to maximize the impact of churches and church health services can be utilized.
Organisations attending included: Christian Health Association of Kenya (CHAK), Anglican Church of Kenya Nazareth Hospital, CMC Hospital, African Inland Church, Anglican Church of Kenya, Redeemed Gospel Church, TransWorld Radio, Family Health International, Kenya Treatment Access Movement, WCC-EHAIA, Presbyterian Church of East Africa, Catholic Church, Coptic Church, Modu Health Management Centre, Mission for Essential Drugs and Supplies, Mutomo Mission Hospital, St. Paul’s Seminary Limuru, Kitui Catholic Hospital, CORAT, MAP International, AWCIN, ANERELA+, NASCOP, USAID.
One of the main recommendations from the starting point research was that more efforts be made to increase lesson learning and sharing within the church and church health service community in Kenya. This inspired an agenda that focused on bringing people together to report on and share their experiences. As a result, speakers were chosen from those interviewed during the research and they were invited to contribute to the feedback by describing their experiences. The group heard a full presentation of the results as well as presentations from a variety of church and church health service perspectives.
Overall and key lessons from the feedback of the research were agreed and ranked for importance by the participants.
The first four lessons, having been ranked as the most important, were then carried through the feedback and future steps process.
The speaker Dr Mary Wangai challenged the group on the first day to show what ‘loaves and fishes’ they had brought to solving the key challenges that were identified in the process of the research:
On day two, the group were asked to name what loaves and fishes they had brought, and they ranked the following as the most important:
See the report document for full details of problem tree analysis and force field analysis undertaken by the meeting participants.
Using a stepping stones exercise, the group decided that the following next steps should be taken:
The All Africa Conference of Churches convened an HIV/AIDS Summit for Heads of African Churches in Nairobi, Kenya, from 7th–10th June 2004. EPN was invited to survey the attendees (100 church leaders from 39 African countries) regarding their knowledge and understanding of HIV/AIDS, and the approaches of their churches to HIV/AIDS and its treatment.
EPN conducted a survey during the first two days of the meeting and then presented results to the meeting for discussion on the final day.
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The results of the Heads of African Churches HIV/AIDS Summit survey indicate clearly that the church needs to catch up with both the welcome news and the challenge of ARVs.
The church in Africa is responsible for over 50% of available health services in many countries and it has a widespread impact on its congregations and communities, individuals and behaviours. Africa and its people cannot afford the church to lag behind on treatment issues.
Treatment issues and ARVs in particular are relatively new issues. Today there is a paradigm shift from HIV/AIDS as a disease of no hope, to HIV/AIDS as a manageable disease. This means there are individuals within the church with no training or awareness who need support and also those who were previously trained in dealing with HIV issues who need to be updated urgently. Approaches to everything, from preaching to medical treatment systems, need to change. The spectre of church-based stigma has still not been beaten and continues to undermine responses to HIV/AIDS and access to life saving ARVs by reducing the likelihood of people seeking VCT and thus treatment—often until it is too late.
The church has an enormous opportunity to change the impact of HIV/AIDS by addressing the opportunities provided by life-prolonging treatments. Out-of-date information and leadership in this area will increase the negative impacts of HIV/AIDS on our families, communities, and nations, as well as on our congregations and churches. Work to catch up needs to takes place as soon as possible. People at all levels, from faith to medical responsibilities, need to re-train, the church needs to re-unite its approaches throughout the entire hierarchy, and we need to re-commit, theologically and financially, to dealing with HIV/AIDS as a manageable disease like any other.
There is both welcome news and bad news in the results of this survey. There are clearly some examples of success that can inspire replication or adaptation in other churches. There are also, just as clearly, some churches that need to move forward. Should we be looking for 100% positive scores or is less than 100% acceptable? Given the enormous impact that churches have in their communities, whether through the pulpit or church health services, Africa cannot afford for one church, one member of the clergy, or one hospital to be getting it wrong.
Respondents indicated that, of their church health services:
There is a need for more up-to-date information:
The welcome news is that 71% of respondents think that HIV/AIDS is NOT a punishment from God, with 80% believing that it is a disease like any other. However, 57% of respondents' churches don’t have a health insurance scheme for staff.
Of the 90% of respondents who say their churches provide the clergy with HIV/AIDS information, only 28% provide anti-stigma materials.
The churches have health services to make a big impact in the area of life-saving treatment.
The need to increase commitment to providing treatment services
The survey results show that, while there are some good examples, there is still room for expanding treatment services.
Voluntary counselling and testing for HIV/AIDS | 86% |
Treatment that prevents mother to child transmission of the HIV virus | 67% |
Treatment of opportunistic infections | 58% |
End-of-life (palliative) care for the dying | 48% |
Support for home-based care of those with HIV/AIDS | 77% |
ARVs to those who can afford them | 36% |
Subsidised or free ARVs to those who can't afford them | 57% |
This question indicates a respondent either does or would do if they could afford to. A willingness to do something has to be step one, even if step two (finding the funds) is more difficult. This leaves a worrying:
The need for written policy to govern health approaches
The value of written policy for health services is fundamental to the development of strategic plans and their implementation. Without written policy, individual ‘positions’ can informally dominate and change at will.
The need to increase access for the poorest
Despite the fact that 98% of respondents' church health services help the poorest to gain access to medicines, the range of approaches used needs to increase:
Provide free supply of medicines | 30% |
Give low interest loans for treatment | 6% |
Charge fees based on ability to pay | 29% |
Sell medicines at the price that they were bought for | 20% |
The Ecumenical Pharmaceutical Network carried out the survey of 100 heads of African churches attending the Nairobi 2004 HIV/AIDS Summit. Responses came from 69 people, (9 in French), from 21 different denominations across 28 different African countries. These findings have encouraged EPN to provide to church leaders information that will continue to strengthen and support existing and new responses. This survey, together with our country-specific research, will help us develop materials for church leaders that will help address treatment issues.
While 78% of respondents indicated that they know what ARVs are, and 77% recognised that ARVs support a stronger, longer life, there are some other areas needing clarification:
People taking ARVs need to continue safe sex or abstinence practices as they can still infect others and can themselves be infected with a different strain of HIV.
If ARVs are taken openly and with the support of the church, the family, and the community then people have access to the correct information about the continued need for safer sex or abstinence. From evidence about the impact of sex education, we have learnt that peoples' frequency of sexual relations is not increased by accurate information, but is made safer.
ARV treatment should only start when the CD4 count is at a certain level and AIDS symptoms have reached a certain stage. Current evidence shows that ARV treatment must then be continued for the rest of a person's life—despite the fact that the person may feel better, the virus is still in their body. Stopping ARV treatment once it has started may increase the resistance of the virus to available treatments and the lethal impact of AIDS returns.
Encouraging VCT is a positive way to increase prevention approaches, and provides a way for couples to make informed decisions. ARV and prevention of mother to child transmission (PMTCT) treatments and awareness of nutrition needs means that HIV is not disease of no hope that it once was.
This is an important distinction, which needs to be clearly communicated. ARVs treat the disease by reducing the amount of HIV virus in the body (viral load), which allows the body’s immune system to strengthen. Unfortunately, ARVs cannot eradicate the virus from the body and therefore a person must keep taking ARVs, as they are not cured.
The need for health insurance for church employees
The church is often one of the biggest employers in a country. If its' staff, whether cleaners, administrators, preachers, doctors, or nurses can’t afford ARVs then their lives are at risk. 57% of respondents' churches don’t have a health insurance scheme for staff. However, 97% of respondents would support the idea.
The need to address employment fears and personal stigma
Some churches sack clergy who are diagnosed with HIV. This kind of stigmatisation does not encourage open and accurate discussion.
Of the respondents’ churches:
It’s a disease like any other!
The welcome news is that 71% of respondents think that HIV/AIDS is NOT a punishment from God, with 80% believing that it is a disease like any other. However:
| Agree | Disagree | Don’t Know |
People who have HIV/AIDS have acted immorally | 17% | 65% | 23% |
Our church is concerned that ARVs will increase promiscuity | 12% | 48% | 41% |
The need to fight stigma in order to increase treatment
Of the 90% of respondents who say their churches provide the clergy with HIV/AIDS information, only:
A clear concern is the need to include ARV information and issues (in particular see page 3 of this document) in existing approaches, as well as the need to retrain those who already have some knowledge of HIV that is now out-of-date.
The need to encourage treatment
While 93% of respondents' churches preach prevention messages, only 81% of respondents' churches encourage people to know their HIV/AIDS status, and only 67% percent of respondents' churches encourage people to seek treatment. Of those that don’t encourage ARVs:
The need to use testimony from those with HIV
Only 50% of respondents' churches encourage HIV-positive speakers to talk about their experiences, although 22% are “thinking about it.” This is big setback in the churches’ efforts to fight HIV. People who can speak from their own personal experience, both of having HIV and of being treated for AIDS with ARVs, have the greatest impact on listeners.
The need to allocate resources
On average, respondents felt that 38% of human resources and 26% of budgets should support the fight against HIV/AIDS. It remains to be seen whether this is happening in reality.
This report presents the summary of the findings and the recommendations resulting from the starting point analysis research carried out in Rwanda in June–July 2004. Work included a desk review, 10 focus groups, 9 priority interviews, and 9 open-ended interviews. Locations included: Kigali, Ruhengeri, Kibungo, Rutongo, and Gitarama.
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“There is a snake in the cooking pot—we must kill it, or we won't eat, and we must not break the pot. The church knows the snake is in the room, but not where it is or how valuable the pot is.”
—A participant.
“Limited knowledge and negative attitudes towards ARVs on the part of health workers and patients were the main limiting factors to ART uptake… Community education is also essential to ensure adherence, dispel unrealistic expectations, and avoid increasing risk behaviour.”
—Attawell K, Mundy J (2003) Provision of ART in resource-limited settings: a review of experiences up to August 2003. DFID/Health Systems Resource Centre.
Consultants for EPN:
The ARV situation in Rwanda is changing at a very rapid rate and a definitive statistical picture is hard to pin down, particularly with rapidly changing access to ARVs due to dramatically lowered costs. The full desk review indicates that:
UNAIDS estimated that 8.9% of Rwandan adults were living with HIV/AIDS in 2001, with more recent estimates placing the figure at 13%. World Relief estimates that 25% of adults have HIV in the capital, Kigali. USAID estimates that this translates to 500,000 adults and approximately 65,000 children living with HIV/AIDS. The number of children orphaned by the epidemic is estimated to be 500,000 (Family Health International (2004) Rwanda country profile).
Seroprevalence among pregnant women at four sites in Kigali had already reached 30% in 1988, and since then the rate seems to have remained similar. HIV prevalence varies across Rwanda’s regions, with the Butare region showing levels as high as 12%, while the Kibungo district shows levels as low as 6%. Seroprevalence is highest in Kigali, but there are also significant ‘hot spots’ in Ruhengeri and the northern province around Byumba.
Currently, USAID estimates that 2,700 individuals are receiving ARVs (although some estimates indicate 6,000 people are on ARVs through over 30 centres). The Global Fund estimates 36,000 Rwandans were in need of ART in 2003. PEPFAR, for example, estimates that, as a result of its work, 50,000 people will be receiving ARVs by 2008. There is a five-year national plan (through the National Council for Controlling AIDS (CNLS)) and a strong element of coordination between the larger donors, including the Global Fund, PEPFAR, Clinton Foundation, World Bank (MAP), WHO, and UNAIDS. Through this collaboration, it is hoped that, by 2008, Rwanda will have full national coverage for VCT, PMTCT, and care and treatment services.
For Rwandans with a household income of less than US$ 85 per month, ARVs are provided free of charge. When available, VCT costs about US$ 0.35, but the cost of CD4 count tests can be as much as US$ 2. In May 2003, the Government of Rwanda, with the William J. Clinton Foundation projected future levels of HIV prevalence in Rwanda (see Figure 1, from the HIV/AIDS Treatment and Care Plan).
Rwanda is one of the countries hardest hit by HIV/AIDS in Africa. Currently, Rwanda is ranked 159 in the UNDP Human Development Index (2004) and 68% of Rwandans live below the poverty line (Government of Rwanda, 2002 PRSP, 2000 data), which is in the region of 20% more than the 1985 estimate. Between 60% and 70% of hospitalizations are HIV-related. It is estimated that life expectancy without HIV/AIDS would be 51 years—currently it has dropped to 39 years.
Government spending on health stands at US$ 6 per year (as estimated by UNAIDS and WHO). This is 28% less than the Commission for Macroeconomics and Health (CMH) per capita per year estimated need.
WHO estimates that, on average, 90% of people in Africa do not know their HIV status.
World Relief indicates that congregational education has been very encouraging, as there has been a clear change in church attitudes towards people living with HIV/AIDS. Churches have been doing much to show compassion, counsel the sick, and talk about HIV/AIDS more openly, despite the cultural taboos. However, these changes are by no means uniform and there remains a problem of senior church leaders being better informed than parish priests. In 2001, legal representatives of most Christian denominations in Rwanda completed and approved a first version of the churches’ policy on HIV/AIDS, leading from discussions organized by World Relief in November 2000.
There is now a desperate need to update the information held by church leaders in the context of HIV/AIDS, and particularly ARVs, which radically change approaches and information needs.
In Rwanda, four of the nine priority interviews and all nine open-ended interviews were carried out with church leaders. This group is defined as any person with a regular role in the administration or implementation of church activities—from Archbishops and Bishops, to Pastors and Reverends, and lay workers and church-related NGO staff. An analysis of the interviews brought out the following results.
10 focus groups were carried out, with participants made up of either church leaders or congregational groups (such as HIV groups).
There are approximately 67 VCT centres and over 30 centres providing ARVs countrywide. The exact number of CHSs, as part of these figures, is unknown. There also appear to be no figures available on PMTCT provision. There is a clear and workable system for the acquisition and distribution of ARVs through CAMERWA (Rwandan Ministry of Health pharmaceutical and hospital supplies distributor). While some hospitals are remote and will obviously face delivery problems, these are no different from the problems they already face and mostly overcome.
Based on the results of all types of research activities, it is recommended that:
A feedback meeting was held in Kigali, Rwanda, from 15th–17th February 2005, as part of work to increase the capacity of church leaders and church-related health services to respond to the massive challenge of HIV/AIDS treatment. The results of research undertaken in Rwanda in June/July 2004 to identify starting points was fed back to a group of 34 people from churches, church health services, NGOs, and government organisations.
The meeting aimed to feed back the research results and develop ideas and commitments to interventions that can be made in the future to increase access to ARVs through the church health services and with the support of the Church.
The summary report of the research (see Appendix 3) was made available in both English and Kinyarwanda prior to the meeting; and during the meeting itself Kinyarwanda was used wherever possible, with spoken translation of some sessions.
Organisations attending included:
Province de l’Eglise Episcopale au Rwanda (PEER); Eglise Presbytérienne au Rwanda (EPR); Kabgayi Hospital; Eglise Inkuru Nziza; BUFMAR; Eglise Episcopale au Rwanda, Diocèse Kigali (EERDK); Assemblies of God; PEER Diocese Kibungo; ADEPR / Kacyiru; Méthodiste Africaine; World Council of Churches (WCC); WCC / EHAIA; African Methodist Episcopal Church; Friends Church (EEAR); CARITAS; RRP+; EML Rwanda; UMUCO; KINJAMATEKA; ARBEF / NGO Forum; Treatment and Research AIDS Center (TRAC-MoH); UNAIDS; EERD Shyira; Urukundo Imana; Electrogaz.
One of the main recommendations from the starting point research was that more efforts be made to increase lesson learning and sharing within the church and church health service (CHS) community in Rwanda. This inspired an agenda that focused on bringing people together to report on and share their experiences. As a result, speakers were chosen from those interviewed during the research and they were invited to contribute to the feedback by describing their experiences. The group heard a full presentation of the results as well as presentations from a variety of church health service and church perspectives.
Overall and key lessons from the feedback of the research were agreed and ranked for importance by the participants.
In Rwanda, it was interesting to note that information needs dominated the discussion and that because the government plays such a central and important role in setting the cost of ARVs (at zero for many people) and in ARV distribution, the work of CHSs to provide ARVs was less a subject of debate.
See the report document for full details of problem tree analysis and force field analysis undertaken by the meeting participants.
Under a general desire to speak out more on ARVs, the group identified some key activities:
Case studies were particularly favoured as a method of transferring information and experiences within Rwanda and across countries. Initial and informal discussions and the research findings identified a number of case studies that could be used:
Separately, case studies could be carried out on:
Make contact with ARV specialists to make the link with support groups and the churches and communities. This will require:
Involve people living with HIV/AIDS. This will involve listening to them and giving them actual power in the process of the access programme.
Address misunderstandings and ignorance. This will involve listening to what people currently think or feel about ARVs/ART and then providing accurate information that is specifically presented in the context of the community.
Develop good communication and leadership skills. This will require identifying existing examples of success (e.g., various support groups) and communicating lessons learnt around these groups, as well as training leaders in listening and leading as well as the identification of support group processes and the promotion of the support group idea.
The group was then asked to identify what one thing they (as individuals) might commit to doing without further support and what they (as organisations) would commit to doing with further support.
Activity | Commitments from: |
| WCC, EPN, EMA, AMEC. |
| AG, AME, ASS. |
| WCC, AG, IN. |
| WCC, PEER, EMA, CARITAS, EPN, KM, EER. |
| LLC, PEER, EPN. |
This report presents the summary of the findings and the recommendations resulting from the starting point analysis research carried out in Burkina Faso in June 2005. Work included a desk review, 10 focus groups, and 26 key informant interviews. Locations included: Ouagadougou, Bobo-Dioulasso, Koudougou, and Yako.
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In Moré, one of the languages of Burkina Faso,
the word 'sida' means husband and truth,
and now also means HIV/AIDS (AIDS = SIDA in French).
“Limited knowledge and negative attitudes towards ARVs on the part of health workers and patients were the main limiting factors to ART uptake… Community education is also essential to ensure adherence, dispel unrealistic expectations, and avoid increasing risk behaviour.”
–Attawell K, Mundy J (2003) Provision of ART in resource-limited settings: a review of experiences up to August 2003. DFID/Health Systems Resource Centre.
Consultants for EPN:
There is widespread debate over the figures for adult HIV prevalence in Burkina Faso, with some figures (and some choices of figures within ranges) indicating a dramatic reduction in seroprevalence rate over time.
There are three possibilities for the wide range of estimates:
During interviews, it was reported that there is much discussion in the sector about why the government uses such low figures; some indicated that they think that the highest figures are used in relation to need and the lowest figures are used in relation to impact. Others refrain from comment.
Regardless of the actual figure for HIV prevalence, the numbers of people currently receiving ARVs are recorded to be 5,510 adults and 168 children (Comité Ministériel de Lutte contre le SIDA (CMLS) / Ministerial Committee against HIV/AIDS, June 2005). This figure is still very far from the estimated treatment needs. In 2003, WHO/UNAIDS estimated the total treatment need in 2005 to be 43,000 people, and the WHO “3x5” treatment target was calculated to be 21,500 people by the end of 2005, based on 50% of estimated need. Burkina Faso has set ART targets of 20,000 people by the end of 2005, 30,000 by the end of 2006, and 40,000 by the end of 2007 (WHO/3x5, Country Profile Burkina Faso, June 2005).
A predominance of late VCT and the self-diagnosis aspect of going for VCT means that, although VCT results can indicate a definite number of people who will need ARVs at some point, it cannot illuminate potential need. However, any campaign that encourages people to go for VCT (as early as possible) would contribute significant information to the debate on the level of ARV needs. Early VCT would also, of course, give the more well known benefits of people knowing their status, such as increased responsible behaviour, increasing positive and healthy living, and (with the advent of ARVs) timely access to treatment. It should be noted that the hope of ARVs can itself (alongside an appropriate community literacy campaign) encourage increased and earlier take up of VCT.
The danger of low estimates of seroprevalence is that not enough attention and focus is paid to the issue of HIV/AIDS in general and to the treatment of HIV/AIDS. This appears to be the case in many aspects of HIV/AIDS church work across the denominations. Apart from a few dramatic and dynamic examples, the churches maintain their prevention work based on early training messages without the new and important messages associated with ARVs.
The government has announced that people must make a monthly contribution of 5,000 FCFA (US$ 10) per month for a first-line ARV triple therapy. This price is out of reach of the majority of the Burkinabè population, especially if there are multiple needs in a single family. (The most recent data available from the WHO World Health Statistics 2005, covering the period from 1990 to 2002, are that 44.9% of the population live below the poverty line of less than US$ 1 per day.)
For adults requiring ARVs, there are no financial means testing mechanisms in place that would allow the poor to access these life-lengthening drugs. In contrast, ARVs for children are currently provided free of charge (where available), as is a standard two-dose PMTCT with Nevirapine (where available).
For the lucky few, ARVs are available for free, through a type of sponsorship mechanism where an organization pays the 5,000 FCFA per month on their behalf. MSF, for example, provides ARVs to 1,000 people (a list that is now full). There are a very small number of other ‘sponsorship’ opportunities. Some schemes only guarantee a limited period of free support – which raises the possibility of problems with non-adherence, virus mutation, and drug resistance.
The argument that the government puts forward is that, as it believes that free ARVs from donors cannot last forever, it needs to build a sustainable health care system. However, alongside arguments for free ARVs (see below), the local network RAME1 and the US-SIDA campaign2 point out that the 5,000 FCFA contribution bears no relation to the actual cost of the ARVs (which is much higher), and will not be sufficient to assure a sustainable ARV supply in the future. They also claim that there is no transparent scheme in place yet for where the money is being collected, or how it is being used.
The WHO/UNAIDS report, Progress on Global Access to HIV Antiretroviral Therapy: An update on “3 by 5” (June 2005), says, without caveat, that treatment should be provided free at the point where it is given. It appears that some donors to the Burkinabè Government have accepted both the argument that charging fees creates a sustainable system and that the current level of charges is acceptable.
There are four faith-based national committees for addressing HIV/AIDS issues in Burkina Faso (representing Muslim, Catholic, Evangelical, and traditional beliefs). Apart from the Muslim committee, none of them have put their full weight behind the free access to antiretroviral therapy campaign, citing a variety of problems, such as the name of the campaign, the fact that churches do not protest, and that it is not the churches’ role. For example, the Catholic Church has two hospitals (out of the three CHS hospitals in Ouagadougou) that actually provide ARVs, and yet they are not part of this campaign. There are a small number of examples of faith-based organizations that do support the campaigns, but the full weight of the denominations is not apparent.
The church health sector is extremely small in Burkina Faso. The annual statistics of the Direction des Etudes et de la Planification / Central Government Office for Studies and Planning (2004) only record 44 registered church-related health structures in Burkina Faso in 2003 (only an estimated 2.3% of all healthcare structures were run by faith-based organizations). The majority of these are thought to be small health posts. During the study period, only two structures were found that provide ARVs: CMA-St. Camille (Centre Médical avec Antenne chirurgicale / health centre with surgical department) and the Centre d’Accueil de Notre Dame de Fatima (CANDAF), both in Ouagadougou. The other hospital-level church structure in Burkina Faso did not provide ARVs. There is a need to develop a cross-denominational overview of the Burkina Faso church health service provision and its role in the supply of health care in Burkina Faso.
While it is recommended that there be an effort to maximize the engagement of CHSs in ARV provision, this really only refers to one hospital with the potential to offer these services. The church-related health posts and clinics that exist could consider offering VCT provision and PMTCT provision where facilities allow, but overall the potential level of ARV delivery through CHS institutions in Burkina Faso is low.
The answer to the problem of both physical and affordable access to ARVs does not lie with the current CHS institutions. While various plans are being discussed to increase the number of, for example, CHS health posts, this alone will not solve the access problem either.
Given the very low potential impact that the church can have through its CHS provision, the church needs to look at the other types of impact it can have. It is noted that the current estimate for the Christian population of Burkina is between 10% and 20%3, but it is likely that the church can reach a much larger number of people through its work. While there is no doubt that all churches are, to some extent, involved in the dissemination of prevention messages, in the main these messages are out-of-date and not well adapted to local circumstances, and do not include the issues of ARVs or PMTCT. The church has not yet fully taken up its role in community literacy on ARV issues, nor, it seems, the necessity of addressing the potential impacts of ARVs in its work with congregations.
Apart from two notable exceptions encountered during the study, Vigilance in Ouagadougou and ACCEDES4 in Bobo-Dioulasso, there is little church work in the area of support groups for PLWHA, advocacy work on related issues, or the prioritization of ARV and prevention messages. It is really only through the auspices of the church structure itself that the Christian faith can have an impact on the issues of HIV/AIDS and its treatment. This means that the churches have to look much more carefully at their activities, their content, and the potential impact of their work.
Some elements of the church do have an important media-based capacity to reach out to audiences with messages. However, it is also clear that, for example, the TV CVK Canal Vim Koeega / Radio Lumière Vie et Développement broadcast organization requires more training and access to information and materials if it is to support the work of the church in this area.
Throughout the research work, people in senior positions indicated that stigmatization of PLWHA was not a problem anymore in Burkina Faso. At the same time, discussions with PLWHA and those closest to the issue indicate that social stigma (rather than institutional stigma) is still very strong, with the church in general not handling stigma issues very well, e.g., a lack of confidentiality.
A number of comments were made that indicated people used to believe that it was possible to catch HIV simply through touching or proximity. It may now be more widely understood (although not perfectly understood) that ‘normal’ contact is not a danger, but there is still a great deal of stigma against people with HIV, particularly those trying to prevent mother-to-child transmission and those taking ARVs. Why there is such a strong de-prioritization of the issue among some senior actors is unclear. However, there is a clear role for the church to play in addressing stigma.
The study indicates that there are areas around which the church needs a better and more up-to-date understanding.
Ten challenges for the church have been identified through this study.
It should be noted that the church in Burkina Faso is not alone in facing these challenges. Much can be learnt from existing and heartening examples from within Burkina Faso (from associations and church organizations) and also from church activities in other countries.
Footnotes
2L’Union Sacrée pour le traitement gratuit des malades du SIDA / Sacred Union for the free treatment of people with AIDS
3Statistics range from Islam: 56%, traditional beliefs: 24%, Catholicism: 17%, and Protestantism: 3% (INSD – Institut National de la Statistique et de la Démographie, 2000), to Islam: 50%, traditional beliefs: 40%, Christian (mainly Roman Catholic): 10% (CIA, The World Factbook, 2005).
4Alliance Chrétienne pour la Coopération Economique et le Développement Social / Christian Alliance for Economic Cooperation and Social Development
A feedback meeting was held in Ouagadougou, Burkina Faso, from 17th–19th July 2005, as part of work to increase the capacity of church leaders and church-related health services to respond to the massive challenge of HIV/AIDS treatment. The results of research undertaken in Burkina Faso in June 2005 to identify starting points was fed back to a group of 45 people from churches, church health services, NGOs, and government organisations.
The meeting aimed to feed back the research results and develop ideas and commitments to interventions that can be made in the future to increase access to ARVs through church health services and with the support of the churches.
All documentation was available in French and translation for speakers was provided where necessary.
Information about the faith-based health service is very poor in Burkina Faso. As of 2003, it was possible to say that 2.3% of available healthcare structures were run by faith-based health organisations. This is far lower than in many especially East and Southern African countries. In addition, for Burkina Faso there is very little information about the level of faith based health care available, so it is not possible to state whether, for example, the level or type of church health care provision is significant in some rural areas.
Of the 44 (as of 2003) faith-based health institutions, it is not possible to say how many are of which type (i.e., hospital, clinic, health post) nor what level of medical provision they can offer. This lack of information about the faith-based health services reflects their minor importance to the sector and the lack of inter-institutional and inter-faith activity that could enhance lesson learning, planning, and response. A key recommendation based on this lack of information is the need for in-country research to gather data on the extent and nature of church health services in Burkina Faso.
Organizations that attended the feedback workshop included:
ACCEDES - Alliance Chrétienne pour la Coopération Economique et le Développement Social; ADIP - S-Association pour le Développement des Initiatives de Prévention et de Solidarité; AEAD - Association Evangélique d’Appui au Développement; AIDSETI - ; ASAD - Action SIDA des Assemblées de Dieu; Association Espoir et Vie; CDCLS - Comité Diocésain Catholique de Lutte contre le VIH/SIDA; CICDoc - Centre d’Information, de Conseil et de Documentation; CMLS - Santé-Comité Ministériel de Lutte contre le VIH/SIDA; CMP - Schiphra-Centre Médical Protestante; CNCLS - Comité National Catholique de Lutte contre le VIH/SIDA; CNELS - Comité National des Evangéliques pour lutter contre le VIH/SIDA; CNMLS - Comité National Musulmans de Lutte contre le VIH/SIDA; CVK/LVD - Canal Vim Koeega/Radio Lumière Vie et Développement; Eglise de l’Alliance Chrétienne; ODE - Office de Développement des Eglises Evangéliques; PAMAC - Programme d’Appui au Monde Associatif et Communautaire; RAME - Réseau Accès aux Médicaments Essentiels; SEMUS - Association Solidarité et Entraide Mutuelle au Sahel; SIDA KA TAA; SOLVIE - Association Solidarité Organisation Lutte et Vie; TEARFUND; UCMP - Union Chrétienne Médicale et Paramédicale; VIGILANCE; World Relief.
One of the main findings from the starting point research was that there needed to be a much stronger focus on – and therefore understanding of – the relevance of ARVs to churches and church health institutions. This inspired an agenda that focused on bringing people together to report on and share their experiences. As a result, speakers were chosen from those interviewed during the research and they were invited to contribute to the feedback by describing their experiences. The group heard a full presentation of the results as well as presentations from a variety of church, government and NGO perspectives.
In the process of the research, the following key challenges for Burkina Faso were identified.
See the report document for full details of problem tree analysis and force field analysis undertaken by the meeting participants.
As the workshop concluded, 10 clear problems had been identified from the forces at work. These were (listed alphabetically):