In the last 30 years HIV/AIDS has evolved from being a disease that was going to “threaten humanity” to one that is barely spoken about, publicly. Depending on where one sits on this issue then this could be solely as a result of advances in scientific understanding and medication, or a realization that the nature of the disease and its actual impact on life expectancy was significantly over-stated. This subject is still highly politically charged, and one that is subject to many taboos and prejudices.
The statistics in the UK show that the number of deaths each year from AIDS related infections is around 500.
Just to contextualize this for 2013:
- Total number of deaths from all causes – 506,000
- All cancers 145,000
- Heart, circulation diseases 140,000
- External reasons, accident etc 20,000
- Hernia 1,000
- Total people living with HIV in UK 100,000
- Total new cases each year 5-6,000
The number of new cases each year, currently around 5-6000, is on the decline from a peak in 2005 of 8000.
Derby has a small HIV unit based at the London Road Hospital, which is responsible for all of the testing and subsequent treatment. As the numbers of cases are relatively small, and life-long, then the Nurses in the unit, led by Catherine Gatford, have a very close and confidential working relationship with each patient. Their involvement goes well beyond the purely clinical aspects of the treatment, and quite often they find themselves as a sign-posting and facilitation service for each case, as well. They are supported and complemented by Derbyshire Positive Support (DPS), led by John Moore, based near the city centre who provide a wide range of counselling, and guidance for people living with HIV, or who are at risk. DPS have the opportunity to provide people with time to talk and listen which is not always available to the Nurses at the hospital. I took the opportunity to speak to both groups about how HIV is dealt with, locally, and some of the underlying issues in Derby.
There is about 500 people currently living with HIV, in the City, with the annual deaths being approximately 2-5. HIV infection through intravenous drug use, and mother-to-baby transmission is practically non-existent as a result of the awareness and prevention programmes. There is around 1 new HIV case diagnosed per week. The overall incidence of the disease in Derby is at 1.8 per thousand of population which is just under the threshold of 2.Above this level more routine testing is mandated; below the cut-off, the routine screening is principally pregnant women. Anyone can go to the clinic in the hospital and request a test if they think they are at risk
The issues that Derby experiences are not unique, in themselves, however, some of the underlying behaviours are informative about the society that Derby has.
- Although HIV is heavily publicized by celebrities and in many quarters is highly credible for funding and scientific research, many of the people who are diagnosed as HIV+ are stigmatized. It is also the source of great embarrassment and shame. Sometimes that can be from within the person, but mostly from others. Surprisingly gay men can be subject to prejudice from within their own community. Asian people have very conservative views, publicly, about sex, and homosexuality, which drives a rejection of those who are diagnosed, or maintain a distant silence. For many in the general public, there is largely out-dated ignorance and they will usually only recall 30 year old messages. The net result of this is that people diagnosed with HIV can feel isolated, depressed, and suicidal with a high likelihood of other forms of risky behavior as a means of personal protection. They may well be on benefits, and this situation can be very fluid and stressful. All of which is principally derived from other people’s reactions to their HIV status and not the virus itself.
- The range of sexual preferences is broad, and blurs the edges for the purposes of statistical profiling. One of the larger high risk areas is men who would define themselves as heterosexual ( likely to be married with children) but who regularly engage in sex with men (MSM) in City Centre saunas and swingers clubs. The level of risk is exacerbated by alcohol, disinhibiting drugs, and the environment. This is a source of many of the people who self-refer. This can lead to personal embarrassment, as the individual may be told to abstain from sex for 3 months, or to wear protection. This is most likely to be an issue with their wife/female partner who is not aware of their MSM practices. There is then a risk for the women when the man avoids the problem and continues to engage in unprotected sex.
- The large Asian population in Derby will typically manage problems within their community. This puts them in the category of “hard to reach” which impedes the provision of healthcare to the individual, as well as not being available to receive advice on transmission prevention. With the City being home to many new communities, as well as transient populations of asylum seekers and refugees, then it becomes more difficult to maintain the level of knowledge in the population. Transmission through Intravenous Drug Use is more prevalent in the East European population as they have not been well-schooled in the hazards of sharing needles. Typically, English is poorly spoken, if at all, which further complicates the discussions and communication of remedial actions.
- Outside of the MSM group, people from Sub-Saharan Africa within Derby have a high incidence of HIV. This group contains most of the women who have HIV, and can be reflective of the traditional relationships that exist between men and women from this region.
This is a small insight into the myriad of subtleties that beset the management of this disease. Much of it is about working with vulnerable people, and providing safe and non-judgmental facilities for people to talk and seek help. Whilst the small unit in the London Road hospital will do what they can, it is not always comfortable for people to go to visit. Derbyshire Positive Support fills that gap, and has anonymous offices on Empress Road in Derby where anyone concerned about their HIV status, families, friends, can seek personal support and guidance. Although medication gives the patients a very good prospect of living a long life, the spectre of the public perception and stigma of the virus will always weigh heavily with them, and for many that is the most damaging aspect of the condition.
Postscript: In 2014 Derbyshire Positive Support had its Council funding cut by 100% and is at risk of closure. The work that they do will never be picked up by the NHS due to their own funding constraints. Although HIV does not result in many deaths, the social issues that those with the condition experience, are profoundly greater than from the more “socially acceptable” diseases. They are not just fighting the disease, in many ways they are fighting an unsympathetic society. Unfortunately Derby, as a whole, is unsympathetic!