Joyce Larko Steiner Senior Programme Manager with the Christian Council of Ghana (CCG), visited WACC in London in February 2010 to attend a meeting of the UK Advisory Committee of a WACC/DFID funded project  combating stigma and discrimination against people living with HIV & AIDS (PLs).   She also visited  Africa Health Policy Network (AHPN) and  Terence Higgins Trust, both UK agencies working in the AIDS field. The meetings were planned to learn more about the work of the UK agencies and to share lessons learned from the Council’s own work to mobilize key groups in the local community to campaign against stigma and discrimination directed towards PLs in three districts of Ghana.

The choice of districts selected for the campaign was based on local research commissioned by the project. Lower Manya Krobo in the Eastern Region has the highest HIV prevalence in the country with local cultural practices such as expecting to have a first child outside marriage . Dangme West is a fishing community, where  returning fishermen working away from home  outside Ghana are exposed to HIV from casual sex. In Ga West the population commutes to the capital city Accra,moving between a very poor agricultural way of life  in the District  and an urban lifestyle in Accra as they look for work to support their families. The research highlighted CCG’s experience of the need to address stigma & discrimination. It was difficult for PLs to disclose their status. Instead they kept it a secret and hence did not access treatment which led to an early death. The silence and secrecy put others at risk.

The local research identified some of the key  broader social-cultural  values in the districts  that reinforced  stigma and discrimination and looked at gender inequalities in the community and the role they played.  It helped to identify the stakeholder groups to be targetted by the project: religious leaders, people living with HIV and AIDS,  media workers ,women ,youth, teachers, health workers, and key opinion leaders. The PLs said that in their experience, stigma was frequently unintended, for instance, health care workers enquiring whether they had taken their drugs during chance encounters in community gatherings, or the case of separate consulting rooms for PLs in health centers :  “ Why do you meet me at a funeral and ask me if I have taken my drugs ? Why do you use a separate consulting room at the health centre for PLWHA ? Why are we segregated when we wait for treatment ?

Larko Steiner explained that “From the very first workshop for religious leaders, we realised we had a lot of work to do. We are making headway but it is very difficult to unlearn behaviour patterns built up over many years – particularly in a relatively short timescale.”.  Within the religious community, issues around HIV were frequently interpreted in inflexible moral terms. The project was generating a dialogue on issues, raising such questions as how a community can  judge a wife infected by a husband, or a new baby born HIV + ?

The three District Management Committees are key to the success of the project. Local people are involved through their Management Committee The project is not seen as an activity run by outsiders – the CCG in Accra. The District Management Committee  has full  control over the work in its area ensuring local ownership /buy in.

Working closely with the Ghana Aids Commission and UNAIDS in Ghana, the project has adapted existing manuals and tool kits to the local language and situation in Ghana. The training material used in the workshops has been tested in the workshop process and a Ghana project manual is in the final stages of preparation. An anti-stigma and discrimination advocacy plan has been drawn up and materials are under production for the campaign to start.

For communities in Ghana there is no room for complacency, for despite relatively low prevalence rates - by 2008  rates were down to 1.7% falling from a high of 3.2%. - Ghana is surrounded by high risk countries where the rates are much higher and borders are porous Once prevalence rates climb above 5% it is more difficult to bring them down.

The African HIV Policy  Network (AHPN) is an umbrella  body of mostly African-led  community based organisations that enables  Africans to speak with a collective and representative  voice on matters  of HIV and sexual health. Its work focuses on policy, campaigning and representation of the HIV and sexual health needs of African communities in the UK. Established in 1996, the mission of AHPN is to influence and inform national, and to a limited extent international policies on HIV & sexual health that have implications for African communities. AHPN manages the National African HIV Prevention programme (NAHIP) – a programme of activities in England delivered predominantly by African led organisations, funded by the UK government Department of Health. Both AHPN and NAHIP work closely with faith communities and people living with HIV to maintain an informed and needs-based response to challenging stigma and discrimination, and to monitor epidemiological trends and levels of awareness about HIV and Aids within African communities in the UK.

In the UK there are approximately 83,000 people living with HIV and AIDS and more than 25,000 of them are of African origin. Of these about 33% are not aware of their HIV status and think that it is far away from the UK and doesn’t affect their lives.
 
Edna Soomre, -  Policy Officer for AHPN explained that “We are funded to challenge HIV related stigma among African communities in the UK”  . AHPN particularly appreciated the decentralised approach of the CCG project intervention and its ability to reach down into the local communities through the district coordinators, local volunteers and  District Management Committees, and congratulated  the CCG on the volume and quality of the work. They particularly recognised in the UK  a similar situation  to the taboos around sex , among Pentecostals and Catholic groups, which made it difficult to communicate properly concerning the issues around  HIV and AIDS. Their network in the UK consist of nearly 100 community based organisations, the majority of which are African-led. Initially in the UK the epidemic was considered an East African  issue, however West Africans have come to realise that HIV is also in their communities. Nigeria for example  has some of the highest prevalence rates.This is also reflected  among the diaspora groups in the UK with a growing number of new cases diagnosed .The challenge is to bring home the message that HIV itself does not discriminate. It is in every community in every religion. Stigma  remains the main reason for people not opting for HIV testing. AHPN works to challenge such stigma. The AHPN “Changing Perspectives Campaign” is  targeted at three  key partnerships/activities to challenge stigma:

1) Media: PLs and Journalists -  Panos London are currently  looking at the impact of media reporting  on Stigma and Discrimination  against  PLWHA.

2) The active involvement of faith based organisations

3) Working with PLs themselves under the “Vital Voices Leadership Programme”.

AHPN has developed two toolkits funded by the Department of Health:

For Christian Faith leaders and congregations:  “Breaking the Loud Silence”

For Muslim communities (developed by and for Imams): “Life & Knowledge”

The picture  (above) shows  AHPN staff members  with the new  toolkit developed for Muslim Communities. Christabell  Kunda and  Mariama Kamara.For further information please follow the link to www.ahpn.org

WACC and CCG will continue to liaise and share lessons with AHPN in the coming months as the advocacy campaign against stigma and discrimination of PLs in the 3 districts is implemented.

Read more about the WACC HIV and AIDS, Communication and Stigma programme here: http://waccglobal.org/en/programmes/hiv-and-aids-communication-and-stigma.html

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The story of Regina, her struggles to live with HIV-AIDS positively

Regina Gyeniah is currently the Vice President and Treasurer of the Nyemisuomi PL association in Dangme West in Ghana. Abused, shunned, isolated, disgraced, evicted and many other adjectives qualifying HIV - AIDS stigma and discrimination are some of the struggles that not quite long ago she had to endure.

Regina was once happily married when her husband got ill. She took him to several hospitals to no avail. The situation only deteriorated. Her in-laws suggested that she takes him to see a traditionalist. This she complied with but the situation only got worse. She was again told to send him to a spiritualist because the family could not understand how all forms of treatment had not worked. She complied to this against her better judgment. However, this required that she stayed with the husband at the camp of this spiritualist and perform all sorts of duties. Perturbed by this, she left the place and this made her in-laws believe that she had something to do with her husband’s illness.

The husband was later brought back to the house as the spiritualist claimed there was nothing he could do for him because of the wife’s refusal to be by her husband. She later took the husband to yet another hospital and this time a laboratory test confirmed that he was HIV positive. She brought the husband home and informed the in-laws about this. Without any proof or enquiry, she was accused of having infected the husband with the virus.

The hospital suggested she take the HIV test to know her status but she refused. The husband’s situation worsened and soon their land lord got to know of her husband’s HIV status. They were threatened with eviction; her in-laws rejected both of them and friends also started to isolate them. Later, after having deliberated on the advice from the hospital, she finally decided to go and get tested for HIV. She was disappointed to find out that she was also HIV positive.

Soon after, she lost her husband and was evicted from their home. Rumours were circulated around by her in-laws that she was unfaithful to her husband and she had infected the husband. Friends and family disowned her. Soon she started loosing weight not because of the HIV virus but mostly because of stress and the sense of isolation, disgrace and shame.

She went back to the hospital where she received counseling on how to live positively with the HIV virus. She was then put on medication. Gradually, she started getting better and has since lived a positive life with the virus. She now owns a business. She also reaches out to other People Living with HIV-AIDS positively with care, counseling and any other way she can support them. She has contributed greatly to the Nyamisiom PL group in Dangme West. She helped them acquire their current meeting place which was formerly the community clinic at Old Ningo and has been advocating on behalf of the group and their needs. The group is supported by WACC.

She is a happy person because she received counseling and support to deal with the landlord and she won. Her advice to her support group members is that they should not give up because there is light at the end of the tunnel.

This project has initiated a self-help group for more than 50 People Living with HIV and AIDS (PLWHA) in one of the Districts and strengthened and revived another in a second District. Regina is a member of the PLWHA group in the Dangme West district, one of three districts where the project is taking place. 

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