World AIDS Day, held on the 1st December each year, provides an opportunity for people to unite in the fight against HIV1 and show their support for people living with, or having died as a result of, HIV. At the time of the first World AIDS Day, in 1988, the world was traumatised by HIV as becoming infected was seen as a death sentence. Today, for those with access to treatment, this deathly prognosis has been lifted and indeed the outcome has been largely positive for more than a decade. This weekend, the sudden proliferation of people in the media wearing red ribbons caused me to reflect on the origin of this symbol of support, especially as initially I had to be reminded what it signified. This is turn made me realise that the public campaigning for and media coverage of HIV/AIDS is now much less overt than 10/20 years ago, and consequently people's awareness may also be diminishing. While this is a renowned global problem2, this week's blog explores this topic in relation to developments in the UK over these past 30 years.
Without doubt, the key development in the fight against HIV/AIDS was the advent of antiretroviral drugs which enable people with HIV to reduce their viral level to the extent that they cannot pass on the virus and can live near-normal lives. Thanks to these modern drugs, the discovery that you are infected does not carry the crushing burden it once did, conversely, the availability of a successful treatment appears to be increasing complacency of those at risk. Public health experts warn that for all the advances that have been made, the battle is not yet won. In the UK, in 2014, some 103,700 people are thought to be living with HIV with 6,151 newly diagnosed cases. New diagnoses peaked in 2005 and have since declined. Fewer of those infected go on to develop Aids, but more than 600 people a year still die of the disease, mostly those in whom the infection was spotted late, indeed detection remains the weakest link.3
International targets are that 90 per cent of those with HIV infection should be diagnosed; of these, 90 per cent or more should be on sustained therapy with modern drugs; and of these, 90 per cent or more should have such a low level of the virus in their bodies that they cannot pass on the infection. While the UK achieves the latter two targets, it does less well on detection. People diagnosed late are ten times more likely to die in the first year of diagnosis compared to those diagnosed promptly. Public Health England estimate that in 2013 around 24 per cent of those with HIV infection remained in ignorance of it.
Changes to commissioning services, following the 2012 Health and Social Care Act, has led to a more complex set of arrangements whereby local authorities are responsible for commissioning services for sexual health, HIV prevention and testing, but NHS England are responsible for commissioning HIV care. In July, the All-Party Parliamentary Group on Sexual and Reproductive Health concluded in a report this July that there is a lack of clarity over who is ultimately responsible, and what powers they have to drive up standards and outcomes.
Meanwhile, although medical science has undergone a revolution since Aids exploded in the 1980s, social attitudes have not caught up. Many people still do not know or truly understand the difference between HIV – a virus that attacks the white blood cells which co-ordinate the immune system – and Aids which is when the body becomes unable to defend itself under attack from other illnesses. Indeed, life expectancy for people with HIV, who are responding to treatment, is no different to anyone else in the population. Moreover, new drugs mean that HIV-positive women are able to have children without the virus and breastfeed. In fact, if HIV is diagnosed and treated, the infection is often undetectable in clinical tests. If undetectable, the infection cannot be passed onto others.
Nevertheless, the stigma and discrimination remain. Indeed, having HIV today is arguably even harder than before. The reason is the increasing role now played by social media, which HIV/AIDS sufferers have good reason to fear because, as recent news items have demonstrated, if one person posts something, it can go viral in no time and if one person is leading an attack on another, few are brave enough to condemn it.
So what is the origin of the red ribbon? This well-known symbol was conceived in 1991, when a group of 12 artists convened in New York to discuss a new project to raise awareness of HIV. After a short brainstorm they came up with the idea of the red ribbon, worn to signify awareness and support for people living with HIV. Inspired by the yellow ribbons tied on trees to show support for the US military fighting in the Gulf War, pink and rainbow stripes were rejected because they were too closely associated with the gay community, and they wanted to convey that HIV went beyond the gay community and was relevant to everyone. Red was chosen as it is bold and visible – symbolising passion, a heart and love. The shape was chosen simply because it was easy to make and replicate. The red ribbon continues to be a powerful force in the efforts to increase public awareness of HIV. Other charities have been inspired to utilise the symbol, for example the breast cancer awareness pink version.
Finally, back to World Aids Day 2015, and its theme: Getting to zero; end Aids by 2030; a strategy aimed at averting 21 million Aids-related deaths, 28 million new HIV infections and 5.9 million new infections among children by 2030. While there is clearly a long way to go, one inexpensive way is to promote awareness and end ignorance and, in the words of Dr Zeuss, "Unless someone like you cares a whole awful lot, nothing is going to get better. It's not."
Footnotes
1 Human immunodeficiency virus infection and acquired immune deficiency syndrome (HIV/AIDS) is a spectrum of conditions caused by infection with the human immunodeficiency virus (HIV).
2 About 37 million people globally are now living with HIV – two thirds in sub-Saharan Africa where half the new infections occurred in 2014. Although some 15 million are receiving treatment, this means almost 60 per cent of people with HIV are not and, as a result, 1.5 million people died of Aids-related illnesses in 2014. The total funding for HIV globally is about $22 billion (£14.5 billion) a year, however, some organisations fear that HIV/Aids is in danger of falling off the aid agenda partly because it's been overtaken by other priorities such as the refugee crisis.
3 http://www.avert.org/professionals/hiv-around-world/western-central-europe-north-america/uk and https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/469405/HIV_new_diagnoses_treatment_and_care_2015_report20102015.pdf
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