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World AIDS Day 2018 was the 30th anniversary of the event and marked a year of significant developments in the treatment of the condition. To raise more awareness of the issue, I went on a radio tour of the UK. I was interviewed by 11 different radio stations on 30 November – luckily I could do all the interviews from the comfort of one office in London, rather than having to visit each studio! I also appeared live on Sky New Sunrise bright and early on the morning of 1 December. To round it all off, I was interviewed on TalkRADIO in London on 2 December.

Before setting up this whirlwind tour of Britain, we carried out a survey to find out current attitudes to HIV/AIDS. We spoke to over 2000 people all around the country, with a mix of ages, genders and relationship statuses. The statistics that we pulled together make for interesting and sometimes scary reading and I was able to discuss them in more detail in the interviews.

  • A shocking 74% of those surveyed do not personally worry about contracting HIV themselves
  • 17% of them admit that they don’t know the difference between AIDS and HIV, with 13% believing that HIV is the result of AIDS, rather than the other way around
  • 12% of those questioned wrongly believe that the diagnosis is a death sentence.

For me, this makes for worrying reading. HIV and AIDS have now been around for more than 35 years. This year saw confirmation that the virus in people who are on effective treatment is so suppressed it cannot be detected in the blood stream, thus rendering that person uninfectious. And on 31 November Public Health England (PHE)** announced that the UK is one of the first countries to reach the UN goal of 90:90:90 (90% of the HIV+ population has been diagnosed, 90% of them are on treatment and 90% of them are undetectable). So how is it that so many people are still unaware of the truth? Why do so many people still associate past stereotypes to AIDS and HIV?

While it was heartening to read in the survey that 60% of those questioned know that HIV is a virus that can lead to AIDS if left untreated, there were still 10% of the respondents who think that AIDS and HIV are the same thing.

“There is no cure for HIV/AIDS”

This is what only 38% of the respondents correctly told us. Over half believe that is it caused by unprotected sex, with around a third of those surveyed thinking that is it most common in gay men or in drug users. Did you know that women can contract HIV and that you don’t have to ever have used drugs to be infected? Indeed, the latest statistics from PHE showed that 770 heterosexual men and 1040 women were diagnosed in the UK in 2017 alongside 2330 gay or bisexual men.

38% of those we spoke to in the survey told us that they think that HIV is more common in the Third World and 3% believe that it is a thing of the past. Sadly, neither of these is true. According to the UN Russia has one of the fastest growing HIV/AIDS epidemics in the world.

“If you discovered a friend had been diagnosed with AIDS, how would this impact your relationship?”

When we asked this question, here’s what we were told:

  • It wouldn’t affect my relationship at all
76%
  • It would improve my relationship
3%
  • I wouldn’t be friends with them anymore
6%
  • I’d distance myself from them
15%

So nearly 1 in 5 of the survey respondents would not wish to maintain a friendship with someone who told them they were HIV+.  I find that shocking and saddening. Many people who contract HIV are still very scared to tell their friends and relations because of how they think they will be treated. I urge you to think carefully about how you would react to this news from someone you know. How would you want others to react if you wanted to tell them that you were HIV+?

#UUAIDS2018

In our survey we asked people what they thought U=U means.

  • Undetectable=Uninfectious
43%
  • Understanding=Unhappiness
25%
  • Unique=Urgent
24%
  • Unemployed=Unfortunate
8%

U=U actually means Undetectable = Uninfectious but less than half of the respondents knew this important piece of information.

This month I have also been out and about as a Positive Voices speaker for Terrence Higgins Trust.  I have spoken in universities as far afield as Coventry and London, to large financial institutions from Harrogate to Canary Wharf and supermarkets from Holborn to Highgate. It’s been a blast!

I was also interviewed by Gareth Johnson of Mainly Male on ‘The life that happens after diagnosis’, by Segilola Salami for a podcast on ‘You are not your diagnosis’ and finally with Chris MacLellan in the US WholeCareNetwork on my book, Ripples from the Edge of Life.

I truly hope that my survey and radio and TV appearances have done something to raise more awareness of the difficulties faced by those living with HIV/AIDS. Don’t leave it another year before you think about it again. If you want to discuss any of the issues raised in this newsletter with me, please do get in touch.

* These statistics come from our research. Please contact me if you would like to know about the survey that we carried out.
** Progress towards ending the HIV epidemic in the United Kingdom, 2018 Report, Public Health England.

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