Can we overcome the stigma of HIV/AIDS in Northern Uganda?

5 August 2014

Uganda is one of the most beautiful countries in the world and I have had the pleasure of witnessing its spectacular scenery and wildlife first hand, during a six week volunteering placement in 2013. Despite the cessation of Lord’s Resistance Army (LRA) activity in 2008, Uganda is still in turmoil. Millions live in extreme poverty and political isolation with a lack of resources and poor health as a result of malnourishment and the HIV/AIDS crisis.

The prevalence of HIV in Uganda represents one of the greatest on-going struggles for the country. Currently 7.2% of the population are living with AIDS and 1.1 million children throughout Uganda have been orphaned as a result of this brutal epidemic (source: Avert).

Uganda was once heralded as a pioneer, paving the way for future improvements in treatment of the disease. It is associated with the many achievements made in the 1990s, most notably the increased reproduction of AIDS drugs by the Indian pharmaceutical company Cipla. Much has been done on a national level and the Uganda AIDS Commission estimates that 5,524,327 people over the age of 15 were tested for HIV in 2011 and consequentially received the necessary treatment and counselling.

However, despite governmental efforts, the HIV crisis is still a long-standing problem and it has significantly contributed to instability within the country. One of the fundamental aspects of this crisis is the rising amount of new infections and this gradual increase has cast doubt over the ability of the country to manage and reduce the implications of this epidemic. Recent statistics highlight the fact that Uganda in particular has had a much larger increase in infection rates compared to other regions in Southern and Eastern Africa and this is disheartening when we consider the national progress made in the 1990s. In 2009 the number of new infections stood at 124,000 and this increased to 145,000 in 2011.

Monumental problems stemming from and contributing to the crisis still exist. A mere 39% of 15-24 year olds have sufficient knowledge about prevention, while a recent United Nations Special Sessions survey highlighted the fact that only 32% of young people who qualify for treatment are able to access this.

The stigmatisation inherently attached to this devastating disease acts as a significant impediment to making progress in access to treatment and is perhaps one of the primary reasons why the disease poses such a grave risk to developing countries. Stella Kentusi of National Forum of People Living with HIV/AIDS Networks in Uganda describes stigma as a ‘degrading attitude of the society that discredits a person or a group because of an attribute such as illness.’

Stigma can manifest itself in many forms, the most common of which are verbal and physical threats and gossip within the communities. An interesting article written by Lynne Duffy explores the various dimensions and strands of stigma surrounding the disease and states that ‘stigma, suffering, shame and silence’ are ‘mutually supporting concepts’ that combine to undermine and make the task of ending the epidemic immeasurably more difficult.

The damaging influence of stigma creates a vicious cycle whereby the fear of isolation and ostracisation following positive diagnosis reduces the willingness of victims to be tested. This in turn increases the risk of infection, and reinforces the message that AIDS is a deadly and shameful disease to be kept out of the public eye. The shying away from recognition and discussion by both AIDS sufferers and the public at large is extremely detrimental to future progress in this area.

The difficulty of the stigma surrounding AIDS is that it creates the impression that its victims are somehow abnormal; a subhuman who has been inflicted with a repulsive disease. By focusing on the physical manifestations of AIDS, the victims become marginalised and in a way almost detached from the norm and from the idealised HIV-free stereotype.

Stigma is inherently connected to the identity of a person and the stigmatisation of AIDS victims has repercussive affects on their dignity, diminishing their life opportunities and ability to achieve their full potential. This stigma is evident not only in Uganda but is reflected elsewhere in Africa and indeed worldwide. In an ethnographic study carried out in Zimbabwe, one woman described the reaction of the local community poignantly declaring that “people will run away” and that “nobody would love you.”

Last summer I volunteered for six weeks in a small rural town in Western Uganda known as Kanungu and one of our tasks was to run a community health day in the town centre. We offered complimentary HIV testing and counselling services to those who tested positive and ran a number of initiatives on the day designed to raise awareness and improve education in this area. What struck me most was the high degree of reluctance, especially among the older male members of the community to be tested and some seemed almost hostile at the mention of testing.

A further danger of the deeply entrenched stigmatisation of HIV is the fact that it prevails not only among the local people but also infiltrates both national politics and legislation. The HIV Prevention and Control Act in Uganda of 2013 contains numerous discriminatory provisions against those living with HIV. For example, it criminalises the transmission and attempted transmission whether knowingly or not of HIV by individuals who are aware that they tested positively. It has been deeply criticised by numerous international organisations. Maria Burnett of Human Rights Watch describes the bill as ‘yet another step backward in the fight against AIDS in Uganda.

Religion has played a significant role in fuelling the stigma. As a predominantly Catholic country, AIDS in Uganda is perceived to be a disease going hand in and with promiscuity or homosexuality and consequently its victims are viewed as sinners; as people who have committed a wrongdoing and are dealing with their comeuppance. One of the most vulnerable group of AIDS victims are homosexuals and the Uganda Anti-Homosexuality Act 2014 was detrimental in that it reduced the availability of treatment for gays. Thankfully the act has been nullified this week and this should lead to greater improvements and protection of this often targeted societal group.

It may be an unrealistic expectation to completely remove the judgemental attitudes and stigma surrounding HIV but it is clear that something must be done to resolve this medical, economic and social problem. In Erving Goffman’s seminal work on AIDS, he describes the reduction of stigma as a preventive action which must occur before the crisis is resolved. We need to eliminate the secrecy and silence.  As Kofi Annan declares, ‘no progress will be made by being timid, refusing to face unpleasant facts, or prejudging our fellow human beings – still less by stigmatizing people living with HIV / AIDS.’ By reducing the stigma surrounding the disease, we are effectively employing a preventative measure which will have a long-lasting effect by tackling and correcting some of the mistaken beliefs and myths associated with this disease. A study looking at possible interventions to reduce stigma has pointed to effective strategies such as counselling, skills acquisition, informative sessions and other methods which aim to remove the label of aids sufferers as ‘the other’.

HART’s PAORINHER centre in Northern Uganda has been invaluable in combatting and reducing stigma. The centre is influential in supporting the local communities, encouraging testing and providing treatment for those in need. The centre also established a school which works to advocate integration between children with HIV and those who have not been affected improving relations between the two often distinctive groupings.

You can watch a video of our partners in Uganda discussing their work here.

It is only in addressing the stigma that the roadblock to concerted action will be lifted (Source: Piot 2000).

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