Executive summary of starting point analysis research in Rwanda

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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• Full EPN HIV starting point analysis research in Rwanda [.doc 469KB] [.pdf 327KB]
• Summary EPN HIV starting point analysis research in Rwanda [.doc 138KB] [.pdf 72KB]

“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:

• Heather Budge-Reid (Kirkwood Communications) heatherbr@kclinfo.com
• Pastor John Paul Ruzindana

1 Summary desk review results

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:

• There is a continuing and increasing need for ARVs;
• There is a continuing gap between need and supply;
• There is an increasing number of people receiving ARVs as a result of large scale external support;
• Rwanda is a resource poor environment facing many challenges.

1.1 Prevalence

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.

1.2 Access to ARVs

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).

1.3 Health environment

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.

1.4 The churches

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.

2 Rwandan church leaders results

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.

1. Only half of those interviewed were able to correctly describe ARVs. This may reflect the speed of change in access in Rwanda, but is worrying as all those interviewed had access to information, either through local CHSs or through their church hierarchy.
2. Three-quarters were unable to discuss ARV treatment issues, such as how long they need to be taken for, etc.
3. Four-fifths were not able to state the benefits to hospitals of patients receiving ARVs.
4. Church attitudes to HIV and ARVs range from “silent”, to “supportive, but with too few resources”.
5. The main myths mentioned were that ARVs are too expensive, and that they can kill you. Interviewees all pointed out that people know so little that there has not been time for myths to develop, although there was much reference to the success of the Rwandan government campaign to get rid of the idea that sex with a virgin would cure you of HIV.
6. The main questions asked about ARVs were where to get them, and how to take them.
7. All of those interviewed said that there had been very little work done on ARVs with the church, no training, no available information, and no guidance about how to talk and pray about ARVs.
8. Three-quarters of those interviewed were unable to give details of HIV prevalence or numbers of people receiving ART.
9. Apart from those in the group already taking ARVs, knowledge of where ARVs could be obtained, their cost, or the cost of CD4 tests was very patchy.
10. All those interviewed stated that they would not prevent anyone from gaining access to ARVs, and all felt that everyone needs to be aware of all the treatment issues around ARVs.
11. Cost was the main reason stated for people not taking ARVs, but this probably reflects a lack of knowledge of the government’s latest (June 2004) price announcement. Only one person mentioned fear, and two mentioned that people might be too weak to take them.
12. There were some important examples of success. For example, the efforts of one pastor who has set up over 40 HIV groups, whose members are in the best position to start ARV treatment when necessary, through income generation and food and nutrition support.
13. There are also examples of problems. In Kigali, a pastor was sacked from his job for being HIV-positive, and other leaders are struggling to make support groups work.
14. All leaders interviewed were in favour of openness about HIV and ARVs and disagreed with silence or ignoring the issues. None were able to identify the source of other approaches, except to say that people in personal denial don’t want to deal with the issue, and responses from parishioners are also personal. All agreed that their churches did not give enough support to leading and advising their parishioners on this issue: “people just don’t want to talk about it—it is so strongly linked to sin”.
15. The one message interviewees wanted people to hear was that there was now hope, and, second, that God works through these new medicines.
16. There are problems with existing materials on HIV being out-of-date, and there are no materials on ARVs for congregations, etc.

2.1 Focus group results

10 focus groups were carried out, with participants made up of either church leaders or congregational groups (such as HIV groups).

1. It was noted that HIV/AIDS support groups linked to hospitals were much better informed that those linked to churches.
2. Where there was knowledge of the existence of ARVs, even without detailed treatment literacy, the most commonly asked questions were:
1. Why do some people not do so well on ARVs?
2. Where can I get ARVs?
3. When should we start to take them?
4. How do they work?
5. Why can’t I take ARVs now, and not wait until I am ill?
3. Where there was knowledge of ARVs, there was concern in the following areas:
1. Many people who get ARVs are getting them too late because people don’t know their status, deny they have HIV, and don’t have a CD4 count test until all other treatments have failed.
2. There are people who are so poor that they would sell or share their medicines. This was a major concern, particularly if they didn’t understand the need to take ARVs forever. There are others who would buy them as they want ARVs immediately (because they don’t understand the need to wait), and stigma and denial means they prefer to hide their status and take ARVs in a silent and hidden manner, without visiting doctors or hospitals.
4. Where there was some knowledge of ARVs, the following information was described as being very important and needed to be communicated to everyone, not just people receiving ARVs.
1. Know your status.
2. You must only take ARVs with a doctor’s supervision.
3. Sharing medicines is wrong.
4. It is a treatment not a cure.
5. You still need safe sex practices as you can still infect people.
6. Remind people that they need the right balance between energy and protein and nutrition such as micronutrients, vitamins, and minerals.
7. Where there was knowledge of ARVs, there was a lot of discussion about whether the CD4 test is set to the correct amount, and a feeling that people need to take ARVs earlier than CD count of 200 or below. This is seen, to some extent, as part of a conspiracy against Africans, many of whom believe that HIV is a human-engineered organism that has escaped from the laboratory, in some way US-related. A good deal of energy is therefore spent by people doubting anything they are told about HIV or ARVs.
5. The majority of focus groups took place with groups with either no knowledge of ARVs or only the most vague idea that they are medicines to help people with AIDS. Where there was an awareness of ARVs, but not detailed knowledge, there were concerns about long-term problems with ARVs; individuals wanted to know about a vaccine; they felt that ARVs could kill people; and they blamed doctors for not giving ARVs soon enough (the CD4 level count issue). While a vocal minority voiced these concerns, a lack of access to correct information leads to the spread of these ideas, particularly without a countervailing voice in the group.
6. Where there was only the slightest of understandings of ARVs, the groups were mostly women and from the poorest segments of society.
1. They feared that ARVs would not always be available, or that ARVs would kill them quicker than HIV.
2. Stigma was the greatest worry. “If people find out that you are HIV-positive, then you lose everything—work, family, children, land, everything, even if you are not actually sick.”
3. All the women agreed that the men are still hiding and that only women were able to ‘come out’ and give each other support. They called on the church to encourage the men to go for VCT, etc. The issue of men and HIV is the most difficult to raise, as men often refuse testing. Women who are tested for the purposes of PMTCT, or just through general VCT, are therefore in serious danger of stigmatization.
7. Many, but by no means all, of the HIV/AIDS support groups ran some form of income generation schemes. This had the effect of providing some income and food and contributed to the positive living feeling. However, it was clear that (as income generation schemes) they had not been monitored, nor received advice on management, etc. Their activities included bean growing, sowing oats, and some food distribution where donations had been organised. However, the most successful groups in terms of positive approaches and income generation were those where the church leader was able to represent them to local authorities and negotiate food, goats, etc., on their behalf. Such activities met with a great deal of support from the group.
8. Where there was virtually no knowledge of ARVs, participative exercises were undertaken to look at why people didn’t know their status (step 1 on the road to accessing ARVs). All groups identified the same factors as the reasons why people don’t access VCT. The groups, with very little variation (even accounting for wealth), ranked them in importance as listed below. Only a small number admitted to having had a VCT test when the group was a mixed non-HIV/AIDS group, e.g., a youth group.
1. Fear of stigmatisation.
2. “Why know your status? What would you do afterwards? There is no help if you are HIV-positive.”
3. “Fear of knowing you are going to die”, “hearing the answer”, “feelings of hopelessness”.
4. Denial. “I am OK”, “it won’t happen to me”, “there is no need for VCT”.
5. Lack of money to pay for, or to get to, VCT services, especially as there is no benefit.
9. After ARVs had been explained to the group, the list was returned to, and the group indicated that the existence of ARVs could overcome each of the reasons.
1. If we can get treatment that enables us to recover, get work, and continue to care for our families, then the stigma would be much less.
2. It’s worth knowing your status if there is help and you don’t have to die.
3. Because of ARVs, there is less reason for hopelessness.
4. If stigma is less and there is help, people will become less afraid of the answer.
5. Paying even 200 RFR is worth it so that you know that you have to go to the doctor for the CD4 test, and that you must eat well and treat opportunistic infections.
10. In one area, a group of pastors came together from a wide range of churches. All expressed an interest in setting up PLWHA groups, but none had done so yet. All the churches prayed for the sick, but the majority did nothing more and did not speak of HIV. The link between sin and HIV was very strong and seemed to be the root of their rejection and stigmatization of people. The pastors each believed that anyone with HIV got it through being immoral. The fact that none of them thought that they had any PLWHA in their churches, in this high prevalence area, was significant. All felt that they would only let a PLWHA speak if they had ‘repented their sins’.
    
    After further discussion, it was clear that it was not generally accepted that HIV/AIDS is a disease like any other and that their only real knowledge was that HIV is linked to immorality. They were surprised by the idea that rape, abuse, being born, or having sex with an unfaithful partner were all ways of getting HIV and had difficulty when asked to think of how they might respond to such a person.

3 Rwandan church health services

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.

1. The Government has already chosen hospitals to receive upgrade funds and supplies in the first round of treatment development. Being chosen for this first round seems to reflect the advanced nature of the hospital and the ability of management to draw interest and support. At no point were the decisions of the Government challenged. There is now a second group of CHSs that have dynamic leaders but whose hospitals are not quite as advanced or the management has had less time to implement strategies for increased support and change. These hospitals are now following up on funding and upgrade opportunities. The impact of dynamic management on the speed of change is remarkable and results in a widely varying capacity between CHSs. It seems that there are some CHS hospitals and health centres that would benefit from learning from the leadership of the more successful ones.
2. The arrival of ARVs is likely to increase demand for VCT services and could, in some cases, ‘leapfrog’ the availability of VCT and CD4 facilities. This is going to require dynamic and cooperative management responses, as CHSs search for funds or shared opportunities for expanding VCT and CD4 testing.
3. There is very little, if any, resistance to the idea of ARVs or PMTCT, particularly with the reductions in cost. However, test costs will remain at previous levels and there are few CD4 count facilities. There is particularly a lack of PMTCT delivery, even in CHSs with antenatal clinics.
4. It was apparent that CHSs are run very independently from their churches, which appeared to be a significant problem for all concerned. No evidence was found of church-to-hospital collaboration around HIV/AIDS or ARVs. Some individual churches had HIV/AIDS groups, so did some hospitals. In some cases, there were church groups and hospital groups from the same denomination, but with no cooperation or referral system. While there are notable successes on both sides, it is important to note that neither hospital staff nor church staff are knowledgeable in the area of running HIV/AIDS groups, and that there is a lack of coordination and information sharing within and across denominations. This means that people in need of ARVs and ARV-related information are not necessarily being referred from or to HIV/AIDS support groups. CHS managers indicated that support in the area of either running or linking to an HIV/AIDS support group would benefit patients.
   
   Other information mismatches were around start dates for ARV service delivery in CHSs, and accessibility to potential patients with pre-knowledge of their status and group support. It was also clear that HIV/AIDS support groups in areas surrounding CHSs were not accessing medical information (such as how long to take ARVs for, the need for testing, nutrition, etc.) So it was possible for a hospital to be aware of ARVs and their attendant issues, while local church groups were not. The link between PMTCT and ARV treatment also seems to be weak. Where PMTCT was given (and this was in very few places in Rwanda), there does not appear to be a strong system of referral to ART clinics—although this may reflect the relatively recent accessibility of ARVs.
5. All CHSs reviewed were very committed to patient treatment literacy and were interested and surprised to discuss the need for wider community understanding. Issues of access to food and nutrition, stigma, and patients coming ‘too late’, were all seen as important, and it was recognized that the wider community needed to know about them in order that the CHS work is maximized. Linking with churches to help this was seen, in the main, as a new and possible concept. When support for ARV treatment is gained by CHSs, materials are made available to support patient treatment literacy, and there does not appear to be a shortage in this area.
6. There was considerable concern about adherence, and access to food and nutrition support, a provision that hospitals are not normally involved with and yet which is important to the success of the clinical treatments. There was support for the idea of informing the community to support adherence, etc.
7. There is a lack of Internet access among CHSs and information for staff is in short supply. CHS staff do not discuss ARVs with people who are not taking them.
8. The most dynamic of CHS managers are happy to help spread their understanding, but indicate that their hospital needs must come first. Despite the difficulties, there are some examples of innovative, replicable, and successful approaches in CHSs. However, there is little, if any, evidence of mechanisms or efforts to share experiences between CHSs or with churches. Among the remarkable and successful approaches which lend themselves to replication are:
1. Two CHSs in a relatively remote area with fully functioning ARV therapy systems.
   - Not far away, CHSs with no ARV programmes and no capacity to gain external support.
2. A CHS hospital run by the Presbyterian Church of Rwanda in Kigali, with ARV therapy functions and support groups.
   - Nearby, a church-based youth group with very little knowledge, and other groups with no knowledge, of where to access ARVs or how they should be taken.

4 Summary recommendations

4.1 Initial recommendations for Rwandan church-based interventions

Based on the results of all types of research activities, it is recommended that:

1. Institutional, cooperative, and information links between CHSs and church-based HIV/AIDS support groups be established.
2. Church leaders and PLWHA groups be provided with full information on ARVs and on spreading the message to the wider community.
3. Advice and opportunities for sharing experiences in developing active and successful PLWHA groups, both within Rwanda and in other countries, be provided.
4. Good practice materials on income generation and food support be made available.
5. Existing HIV and AIDS materials for church leaders and teaching curricula be updated to include treatment and ARVs.
6. The church-based and other related media’s understanding of HIV/AIDS treatment and ARV issues be improved.
7. Messages with particular reference to men and their access to VCT and attitudes to HIV/AIDS treatment and ARVs be included in new materials.
8. Churches advise and encourage people to have VCT tests as the first step to treatment and access to ARVs.

4.2 Initial recommendations for Rwandan CHSs

1. Increase lesson learning and exchange. Draw out experiences and share them within Rwandan CHSs and with CHSs in other countries. This might include case study publications and exchange visits, with a focus on PMTCT, VCT, CD4, ARVs, and ART.
2. Increase linkages and cooperation between CHSs, churches, and HIV/AIDS support groups. Attempt to link CHSs and churches around ARV issues, including the joint organization of HIV/AIDS support groups, availability of speakers, and regular information updates.
3. Increase CHS capacity to deal with food and nutrition issues. Provide training support for pharmaceutical staff in the systems and requirements of food and nutrition support for people with HIV and receiving ARVs, and ways to access supplies, monitor distribution, and reduce dependency over time.