Bryony Whipp looks at HIV and AIDS in the United Kingdom and challenges the stigma that surrounds the disease
No one disputes that HIV and AIDS are a huge global crisis, and no one would deny the need for scaled up international action. The HIV and AIDS situation in the United Kingdom is, however, less clear. The number of people with the disease is substantially less than in sub-Saharan Africa but is far from insignificant. With, according to the National AIDS trust, almost 50 000 people diagnosed as having HIV in the UK; we must take the virus seriously.
More consideration is given to HIV in its global context, rather than nationally. Why is this? It is likely that the media prefer a negative picture of mass suffering to an image of people with HIV leading healthy active lives. It is also possible that fear of HIV makes us as a nation distance the effects of the pandemic. The infection becomes something that happens to them and not to us. We can alienate our risk and thus do not need to face up to the associated issues of death and sexual taboo.
Fear of HIV is in some ways natural. A cure for the virus has not been found and the diseases related to AIDS cause considerable pain and discomfort before death. Many of our anxieties are unjustified; many people are under the misconception that people with HIV are unable to live healthy and active lives. This myth needs to be broken down as it creates a stigma that makes maintaining normality a constant struggle for infected people. HIV should not erode a person's right to a life free of discrimination.
A second reason for challenging perceptions is the need to control the rise of infection. Figures from the Terrence Higgins Trust currently estimate that infection rates will rise by 40% between 1999 and 2003 in the UK. This is partly attributed to a lowering in the average age of first intercourse, an increase in levels of unprotected sex, and more prevalent sexually transmitted infections. Stigma itself may also influence transmission by discouraging individuals from getting tested and making it harder to change sexual practices on discovering a positive status.
Fear of illness and death play an important role in creating stigma. Stigma also breeds where there is a lack of understanding of HIV and its transmission. The association with prostitutes, gays, and drug users means people tend to assume those infected with HIV have behaved in a socially unacceptable, depraved manner. This moral judgment is founded on nothing but ignorance and again is an example of how many people distance HIV to avoid thinking about how it may affect their own lives.
Imagine how it would feel to be infected with HIV and shunned by family and friends. The combination of guilt, shame, and despair is enough to drive anyone over the edge, never mind someone who is trying to come to terms with a long term, life threatening illness. Unfortunately, stigma affects more than the social aspect of people's lives and people with HIV face further difficulties with employment, education, and health care.
Under the 1995 Disability Discrimination Act, it is illegal to discriminate against someone with HIV. This act, however, only protects individuals once they have become ill. It is hoped that campaigning will succeed in amending the law to include all those diagnosed HIV infected. Although legally enforcing human rights provides a safety net to turn to if treated unfairly, it does not change attitudes. It is not uncommon for colleagues to start whispering campaigns making conditions at work unbearable. An infected person is then left with no choice but to leave voluntarily.
With regard to health care, most infected people report receiving good treatment. However, the current trend of encouraging HIV infected patients to use mainstream health services could have worrying implications. Being refused treatment by doctors and dentists is commonplace and justified with arguments such as, "It would be irresponsible to endanger my other patients." Clearly, even health professionals have not got adequate information on the transmission of HIV.
In the UK, the main groups affected by HIV are gay men and Africans. It is very difficult to target these groups with sexual health campaigns as these could reinforce stigma and discrimination. Both groups face discrimination in many aspects of their lives.
From an early age, gay men frequently encounter verbal and physical abuse at school, at work, and in the wider community. This treatment has been shown to have a detrimental effect on their health, especially their sexual risk taking behaviour.1
Racial intolerance is sadly still a part of our society. Among black Africans, unemployment is over three times as high as for white people. This is despite negligible differences in qualifications.1 This social exclusion can have a negative impact on long term health. Being infected with HIV exacerbates their exclusion, making it even harder to live normal lives.
Asylum seekers face further disadvantages. They flee from war and persecution and find themselves deprived of basic health care and nutritional needs. Under the voucher system, mothers cannot purchase the formula milk needed to minimise the risk of transmission to their babies. The policy of dispersal has meant people have been sent to areas with little knowledge of HIV or underdeveloped sexual health services.
The social exclusion experienced by these different groups can mean that they do not see their sexual health as a priority.2 Unsurprisingly, the main concerns of asylum seekers are food, family unity, security, and education.
Examining how stigma influences the HIV epidemic shows how we can act to control the virus. Even in areas without stigma, HIV is spreading. Although resources pumped into research are not wasted, it would be more effective to break down the stigma towards those infected with HIV. This would enable people to seek diagnosis without the fear of discrimination. Those infected would be able to be open about their status and thus get earlier treatment and minimise further transmission. Social exclusion must also be tackled so that their higher risk of infection can be removed. Raising awareness of HIV and AIDS is the key to turning feelings of shame and fear into hope and solidarity. Through facing up to the epidemic together, the problem of HIV can be overcome.
