The scourge of AIDS: positive change on Lake Victoria’s Mfangano Island

On the first of December every year since 1988, countries across the globe have commemorated World AIDS Day. It is a day designed for government and health officials to raise awareness of the AIDS pandemic, for people to show support to those living with HIV, and to commemorate those who have passed on from the disease. It was the first ever global health day, and is now the longest-running disease awareness and prevention initiative of its kind in the history of public health. The high prevalence of HIV and AIDS amongst the fishing communities of Lake Victoria means that many are familiar with the initiative, having taken part in previous World AIDS Day events held in various locations around the lake’s shores. For the residents of Mfangano Island, however, this year’s commemoration was a first.

Mfangano Island lies at the mouth of the Winam Gulf, just off the eastern shore of Lake Victoria. Though it can take an hour and 45 minutes to get to by ferry, the island is easily recognisable from the mainland by the green-clad cliffs of the imposing Mount Kwitutu at its centre. The island is home to Kenya’s largest population of Suba people, some of whom are believed to be descendants of the original nineteenth century migrants from the Buganda Kingdom in Uganda. ‘Mfangano’ is derived from the Abasuba word ‘okuwangana’ – which means to unite, or a place where people united.

Mfangano’s residents form part of the 30 million or so people in the region who are dependent on the lake in one way or another, and fishing is still the predominant source of income for a large proportion of the island’s population. There is a correlation, however, between the high prevalence of HIV and AIDS in the region, and this dependency on the fishing trade. Because fishermen spend little time at home, they (and their spouses) often engage in temporary sexual relationships in an environment with insufficient health care facilities. Women are also forced to cope in a largely male-dominated society, and have been known to practise ‘sex-for-fish’, locally known as ‘jaboya’, to get a share of the catch. The practice has contributed to an HIV infection rate of 27.1%. So over 7,000 of the island’s 26,000 inhabitants are HIV positive.

The significance, then, of commemorating World AIDS Day on the island is clear to see. The event is a reflection of the realisation in recent years of the need to increase awareness and advocacy around the major socio-economic challenges faced by Lake Victoria’s fishing communities. One of the organisations working towards these goals in the region is Diakonia Sweden, which has been implementing their Lake Victoria Programme (LVRP) through partnerships with various local NGOs and faith-based organisations since 2006. Their work spans beyond Mfangano Island, and involves communities on Ssesse Island in Uganda, Osiri and Sio-Port in Kenya, and Ukerewe Island in Tanzania.

The emphasis at the beginning of December, however, was predominantly on awareness creation and the mobilisation of communities on Mfangano Island for the commemoration of World AIDS Day. As the procession snaked its way through the small towns on the eastern side of the island, hundreds of the island’s residents gathered at the site of the day’s events. ‘Getting to Zero’ was and will be the official theme for the global health day until 2015 – reference to a concerted effort to reduce global infection rates to zero. The focal point of the event was a number of speeches by various local and county government officials – including Dr Mathews Ajwala, the District Minister of Health for Mbita sub-county, as well as presentations by stakeholders, and partners of the Lake Victoria Rights Programme. A number of HIV positive residents of Mfangano also spoke, and it was their messages that really struck a chord with the crowd that had gathered.

One of the key elements of these messages was the discouragement of stigmatisation around the issue of HIV and AIDS. The emphasis was on living with the disease – that HIV positive people are not patients, and with the right medicine can live as long as anybody else. The stigma around it can be just as damaging as the disease: living in fear and not getting tested does little to curb the spread of the virus. According to the Dr Ajwala, a lot is being done to minimise this stigmatisation on Mfangano Island:

‘There may be an element of stigma, but it is not pronounced, and I think this is mainly because of the recent increase in advocacy work (around issues of sexual and reproductive health rights). Generally there is acceptability. We have been able to bring the HIV prevalence down from 40% in 2002 to just 27% today.’

This acceptability was reflected in the openness of a number of conversations I had with beneficiaries of this increased advocacy work on Mfangano Island. One of them was found to be HIV positive and was left to die by his family. After receiving help from a ‘paralegal’ – who are voluntarily involved in health work, policy advocacy and dispute resolution – he is now back on his feet, has his wife back and is fishing again.

Another was open about the fact that she used to ‘move around’ with fishermen once her husband died in 2006. After receiving training about the risks of HIV and her lifestyle, and about entrepreneurship, she managed to get a loan and can now afford to send her two daughters to school through money she raised by opening up a kiosk and working at a local hotel. She also refused to re-marry, going against a deep rooted Mfangano tradition in which widows were forced to be inherited by another man – usually an in-law.

These positive stories of change, as well as the commemoration of World AIDS Day on Mfangano Island, are a testament to the decrease in stigmatisation and changing attitudes of Lake Victoria’s fishing communities. Though the prevalence of HIV and AIDS is still high in the region, these communities seem to be responding to the increased activity of the programmes designed to tackle not only this prevalence, but the social and economic issues that come with it.