THE BLOG

We Need The World To See Red

28/09/2017 09:06 BST | Updated 28/09/2017 09:06 BST
Terrence Higgins Trust

Today Terrence Higgins Trust, the UK's leading HIV and sexual health charity, proudly unveils its theme for this year's World AIDS Day on Friday 1st December - #SeeRed.

See Red is, of course, a reference to the famous red ribbon that represents the fight against AIDS. It's also a call for people to join us in vowing to work together to stop the spread of HIV.

I must admit I don't remember much about the first World AIDS Day after I was diagnosed with HIV. I found out I was HIV positive in the summer of 1996, when a diagnosis of HIV, if not exactly a death sentence, was certainly tantamount to discovering your life was to be cut short.

I certainly didn't join in any celebrations of pride and remembrance, or sport a red ribbon on my lapel that year. Still in shock, I'm sure I did all I could to block out the unwelcome reminder that I was HIV positive, something I still hadn't been able to face telling my parents about.

When I was diagnosed back in the nineties, antiretroviral drugs were first becoming available. I signed up for a trial because it was hoped they might extend life expectancy - it had to be worth trying something which might add six to eight years to my life.

I took over a dozen tablets a day - some with food, some without food, some with fatty meals, some at bedtime, all at exactly the same time each day. There were horrendous side effects: skin rashes; diarrhoea; nausea; feeling generally spaced out. I also developed lactic acidosis - a dangerous build-up of lactic acid that, had the doctors not caught it in time, might itself have caused severe illness or even death.

As well as the physical side-effects, there was the mental barrier around taking all these pills that made me feel, on a day-to-day level, far worse than I had before I started taking them. Added to which there was no guarantee they were going to significantly increase life-expectancy. The hope was that I might win up to eight years more to live but in my mind it was far from guaranteed.

I am pleased to say that treatment has come a long way since I was diagnosed. Tremendous medical advances mean that some people living with HIV now only have to take one tablet a day. Side effects are few and, crucially, today's drugs don't just extend life expectancy - they give you the same life expectancy as a person without HIV. This incredible scientific progress is, in itself, a cause for joy and celebration on World AIDS Day; if someone has access to effective treatment, HIV is no longer the terrible death sentence it once was.

It saddens me to say that the last two decades' advances in human understanding and attitudes towards HIV haven't kept apace with scientific progress.

Back in 1996, newly living with HIV, it was unspeakably painful to come to terms with the fact that I was considered to be a risk. I felt that I was a threat to anybody I came into contact with sexually, with the potential to pass on a deadly virus.

We now know that treatment can suppress the virus to 'undetectable' levels, making it impossible to transmit HIV. We now have drugs that enable a person with HIV to live as long as a person without HIV.

Yet a dangerous combination of stigma and complacency perpetuate the HIV virus in the UK.

As the Chief Executive of Terrence Higgins Trust I believe that I have a responsibility to be open about my HIV status and to challenge stigma when I come across it, either personally or professionally. Stigma is manifested in all manner of subtle ways. It's not necessarily as blatant as someone 'having a go'. It's there in your workplace, when people say nothing but you know rumours circulate the office. It's there when you go to the dentist and see you're marked as 'high risk' on your medical records (on one occasion, the dentist even arrived at my appointment wearing something resembling a space suit, wrapping his equipment in a medical version of cling film!). If the medical community doesn't understand HIV properly, how can we expect others to?

Stigma is still rife in some parts of the media. For example, the amazing treatment PrEP (Pre-Exposure Prophylaxis), which prevents transmission of HIV to those who take it, is all too often referred to as a 'lifestyle drug'. This is simple ignorance and it propagates the stigma around HIV, instead of praising incredible medical advances which - along with testing, access to treatment, condom use and behaviour change - we hope will bring an end to the transmission of HIV in the UK within a decade.

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For all these reasons, as well as many more, I know that World AIDS Day is every bit as important and relevant today as it was when I was diagnosed back in 1996, with the Government's tombstone campaign still fresh in people's minds.

Seeing people all over the world wearing their red ribbons on Friday 1 December - on their suit lapels, on their T-shirts, on their wrists, in their hair - will fill me, as it does every year, with a terrific sense of hope.

The red ribbon is a powerful symbol which represents people's collective understanding that HIV isn't over, and a collective will to do something about it.

It shows solidarity - people standing together to tackle a virus that continues to kill over a million people each year across the globe, and to stigmatise, both in this country and all over the globe.

If we all work together, we can stop the spread of HIV in the UK within a decade. This means normalising testing, particularly within the groups in which HIV is most prevalent (13 per cent of people living with HIV are unaware that they have the virus). It means working with the Government to include LGBT relationships and HIV on the curriculum once SRE (sex and relationships education) becomes compulsory in schools in 2019. It means continuing to lobby the NHS about making PrEP freely available to those who need it. It means continuing to educate people about AIDS, HIV and the importance of using a condom.

World AIDS Day is the one day in the year that the global spotlight falls on AIDS and HIV. Yes, it's time to proudly pin on a red ribbon, pause and remember those we have lost, and to be angry about the one million people who die of AIDS-related illnesses every year due to the lack of access to treatment. But even more importantly, it's time to look to the future and ensure we all work together to stop the spread of HIV once and for all.