Rachel Lewis, development co-ordinator at Milton Keynes STASS, finds misinformation and prejudice still surround the issue of HIV and AIDS in the UK 25 years after it hit the headlines.
A recent article on Nursing Times.net, reported that the NHS must brace itself for a sharp rise in patients seeking treatment for this infection. This was greeted by a reader commenting that HIV was a ‘lifestyle choice’. Indeed the writer went on to appear to suggest that sufferers should be ‘ostracized and abused’!
It is unclear whether the contributor is a health professional. It would be doubly shocking if this was the case and would be extremely worrying for those seeking treatment/support from statutory services.
Indeed it is partly due to such ill informed ignorance that some of the issues surrounding HIV are still so problematic. We are hampered by the stigma that surrounds this infection, with people unwilling to come forward for testing, or to admit to being HIV positive. Indeed it even makes some individuals unwilling to accept help and treatment in case ‘someone finds out’.
Many suffer intense mental health problems as a result of fear, misplaced guilt, rejection and the physical neurological effects of the disease and its drug treatments. At STaSS - an HIV charity based in Milton Keynes - we challenge stigma and work hard to prevent transmission of HIV through effective outreach and education programmes, and encourage testing to gain early access to treatment.
Setting aside the dubious moral stance implied by the contributor against certain sections of society, it is perhaps worth noting that rates of infection are increasing in the heterosexual community (78% of the total numbers of individuals diagnosed in Milton Keynes being reported to be as a result of heterosexual contact according to NHS Milton Keynes Annual Public Health Report 2009) and the prevalent belief that the HIV/AIDS ‘epidemic’ has gone away is sadly mistaken.
Whilst many of our clients are from the Black African heterosexual communities - often having been infected through the use of incompletely screened blood products – an increasing number are from the white heterosexual community; often in their 50s and indeed we also support people well over retirement age. We also care for children, some as young as ten years old, some potentially infected by their mother whilst breast feeding. As I hope is now clear, HIV is an insidious disease with many routes of infection, and quite what ‘lifestyle choice’ the reader deemed these sufferers to have made is an interesting question!
It is undoubtedly true that the woeful lack of knowledge and understanding about the disease, and an increasing view that somehow HIV is simply another ‘treatable’ chronic disease (so we no longer need to worry), are of course contributory factors to these attitudes. However views that HIV infected individuals somehow ‘bring it upon themselves’ belong in the ‘dark ages’. After 25 years of working to combat this disease, such comments leave one in a state of shock. How many backward steps have we taken to reach such a position? Have we learned nothing!
In the position paper recently produced by BHIVA on ‘The future role of primary and community care in HIV’ they specifically reference the fact that HIV ‘retains exceptional features which mean it differs fundamentally from conditions widely managed in primary care, e.g. diabetes’, and that the long term physiological effects of drug treatments and progression of the disease are still unknown. HIV is still an important and challenging issue. It is important that HIV regains its position at the top of people’s agendas, as it is the creeping levels of complacency that have brought us to our current situation.
It is high time that we realised that there is a generation out there which is exposed on multiple fronts to infection with HIV and is poorly positioned to protect itself since it lacks the required knowledge. This is not just ‘another STI’ that gay and promiscuous people ‘get’. It affects our whole society. Those who have conveniently forgotten that HIV exists need to be reminded and indeed re educated about how things have changed -arguably not always for the better. Prejudice abounds - much as it did in the 80s - but now it exists within a cocktail of misinformation, misinterpretation, stigma, ignorance and complacency.
Challenging these attitudes is exactly what STaSS is doing through its work. We need to act now to challenge these attitudes if we are to avoid/contain the unnecessary and accelerating spread of this disease that we are currently seeing.
Rachel Lewis is development co-ordinator at Milton Keynes STASS
This article was written in response to a reader comment which has subsequently been removed.