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'I became a mother, a widow and was diagnosed HIV positive all within 18 months'

'I became a mother, a widow and was diagnosed HIV positive all within 18 months'

Lizzie Jordan

Lizzie Jordan, a 35-year-old from Lincolnshire, gave this powerful speech about her own HIV diagnosis and her vision for HIV in the future at Terrence Higgins Trust’s 2016 World AIDS Day reception at the House of Lords.

'When I’m invited to speak, people usually ask for my story. They want to hear the morbid details. They want to hear the labels and boxes that they can put me into rather than  really  listen.

'Well, there are many labels that you could give me. I am a mother. I am a widow. I am HIV positive.

'Ten years ago, I became a mother, a widow and was diagnosed as being HIV positive, all within an 18 month period.

'My life was very suddenly and very significantly turned upside down. I was faced with the frightening reality that I wasn’t actually invincible, as I had believed in my early twenties. I was suddenly very aware of my own mortality and of my health, something I like so many, was guilty of taking for granted previously. I was also faced with the harsh reality that our precious little family of three was now a family of two.

'My partner had been, we thought, fit and well. He fell ill and four days later he had died. The coroner's report delivered the earth shattering news that he had died from an AIDS defining infection and so was assumed to be HIV positive.

'I was sent for testing, and on confirmation of my positive result, our child was tested. By some miracle, even after 18 months of being breastfed, my child is HIV negative. I had to step up. Everyday, I had to get up. I had to wake up, I had to get up, I had to raise a child and keep our little world turning. When you have a child depending upon you there is no other option.

'Those first few years I was tackling a lot of firsts – my child’s first birthday party without Daddy. Our first Father’s Day which had no Father present. The first anniversary of his death. My first unsettling visit to the HIV clinic. My first treatment regime. My first TV appearance.

'I decided to speak out, to share my story, to encourage others to get tested. I did this on national TV with Stephen Fry when he made a BBC documentary in 2006 on HIV. Since then I’ve spoken around the world about my story, my life, the social enterprise I since founded and my experiences now that I go into schools talking about sexual health, not only HIV.

'You see I don’t fit into the typical stereotypes or boxes that people think of when they imagine someone living with HIV. People think HIV doesn’t affect people like me. The young people I meet each week, don’t think HIV affects or could affect them, either directly nor indirectly, by transmission to them or someone they know, or future encounters in the workplace or wherever.

'But that’s the thing with a virus. A virus like HIV. A virus doesn’t see boxes, doesn’t see people. Doesn’t see your gender, your sexuality, your skin colour or your age. It simply wants a home, it wants a host in which to replicate itself. It doesn’t discriminate. It is people that discriminate. Not the virus. It is people that cause and fuel stigma. Not the virus.

'We need to challenge people. We need to challenge stigma. We need to challenge the inherent stigma within our institutions; within our healthcare system, within our schools, within our prisons, within our society. Stigma is impacting on people living with HIV every single day and that is unacceptable. You see many people think HIV happened in the past, that it is ‘sorted’, dealt with. Over.

'Well it’s not. And people living with HIV are feeling the impact and the reality of the truth. It is not over. I hear the stories daily of stigma, sometimes overt, sometimes covert.

'I can recall countless stories of the stigma that I have faced in the ten years since my diagnosis. I am able to offer retort and respond, many many more are simply not able to do that.  I am able to challenge. I am willing and able to try and educate. To try my hardest to shatter the illusion that stigma doesn’t exist. That we’ve sorted HIV in the UK. That it is no longer an issue. When in reality it is. We can change that.

'You’re hearing my voice right now. My story. What’s not being heard are the thousands of voices struggling for support, not daring to disclose their status for fear of losing their jobs, their families, or losing respect from co-workers and friends, losing their dignity. Voices like the elderly HIV positive gentleman in Lincolnshire, my home county, who was turned away by eight different nursing homes before finally being accepted miles away from his family and loved ones. Sadly even then, some nurses in that home refused to care for him. We now have a generation growing old with HIV who need caring for, with the compassion and respect that they deserves.

'We know that in the UK there are over 100 thousand people living with HIV. We also know that 1 in 6 HIV positive people in the UK are living in poverty. 

'We know that welfare reform has severely impacted on the HIV positive population and we know that Brexit will likely impact further on those in poverty as well as ever diminishing NHS budgets.
Our local support services are being ruthlessly cut. The mental health support services we try to access are again being cut.

'I am witnessing inconsistencies in funding arrangements across the UK, with localized decisions over whether services are funded or not. I worry that what we are seeing is a postcode lottery developing in HIV support services. National government cuts are seeing local authorities cut funding to their HIV provision; we have even seen it removed completely from Bromley, Norfolk, Portsmouth, Slough, Bracknell Forest and Bexley.

'Now surely this all seems to be at odds with The Department of Health’s 2013 Framework for Sexual Health Improvement in England which highlighted the need for people to remain healthy as they age, to have rapid access to high quality services and to reduce onwards transmission of HIV. No? I tell you now that it is indeed at odds with all of that.

'If we look across to Greece, they have seen since 2011, that as austerity has taken hold, HIV infection rates have risen by 200%. Prevention budgets have been cut and intravenous drug use has increased amid a 50% youth unemployment rate.

'With that in mind, the cuts to sexual health and HIV services here in the UK are very very concerning, not only in terms of transmissions of HIV, but also the future implications and potential rising impact on NHS services. It is a false economy whereby Public Health budgets are diverted in order to protect mainstream NHS provision.

'The thing is with HIV – if, like me, you know you have it, you can be treated. You can live well and expect to live well for a very long time. You can prevent onwards transmission. BUT, this is reliant on someone being aware of their HIV status and easily able to access effective care and treatment.

'Yet here in the UK, it is estimated that one out of six people are unaware of their infection and therefore do not know they are living with HIV and potentially unknowingly infecting others.

'Now each new HIV diagnosis costs the public purse three hundred and sixty thousand pounds in lifetime treatment costs, and this raises significantly with late diagnosis. In the UK 17 people a day are being diagnosed. 17 people every single day. 17 people a day here in the UK.

'And that diagnosis will save their lives, and perhaps others who will never become infected from them.  When care and treatment is accessed, each one of those diagnosed will also then halt the associated spread of infection.

'When the cost of a test can be as little as £5, IT IS a false economy to scale back spend on testing and prevention. We need to focus on ensuring testing happens. We need to focus on diagnosing those that don’t know their status. Those that unknowingly are onwardly transmitting the virus.

'I would like to see HIV testing become opt out, not opt in. That HIV testing becomes accessible across all points of care and in the community, not something charities have to fight to fund. We need GP’s to be offering testing. We need all A&E department admissions to be testing as standard. We need a HIV test to become just another routine blood test!

'We all know it is ok to have relationships. Sexual health is our own responsibility in the same way our dental health is. HIV testing needs to become as routine as a dental check up, or as a blood pressure check up. There also shouldn’t be any shame in asking for a test. We need to shift attitudes.

'We have to support the amazing charities, such as Terrence Higgins Trust, who are encouraging the frank and honest conversations for proactive HIV testing. They are the ones providing access to testing across the UK. They are providing some of the support services that are woefully lacking across mainstream healthcare provision.

'I also have to thank my fellow advocates, many of whom are here this evening. The voices of HIV in the UK. The people willing to stand up publically and be the faces of HIV today. The people who are willing to dispel the ignorance and fear that leads to stigma. Willing to share their stories, demanding not pity or sympathy but understanding and respect.

'What I need the government to commit to – is to end new HIV infections. We need a long term plan, not short term reactive campaigns. If we look to San Francisco, we can see how effective coordinated approaches can be to significantly impact on HIV diagnoses.

'Here we have fantastic access into care, and crucially retention, in comparison to across the Atlantic, so now is the time to demonstrate that we can also lead in prevention.

'I want a coordinated  approach encompassing all the facets, tools and innovations available – from testing and treatment programmes, to PrEP and condom messaging to community engagement. For me this has to start with our young people. Young people are 20 per cent of our population, but they are 100 per cent of our future.

'A recent Terrence Higgins survey of almost 1000 young people, aptly called ‘Sshh…No Talking’, showed that one in seven young people had not received ANY sex and relationships education AT ALL and three in five respondents didn’t learn about HIV in school. This just isn’t good enough.

'We need to end the silence on sex and relationships education to provide young people with the knowledge and skills for life outside the classroom and beyond the school gates.

'I started a social enterprise called Think2Speak. We work with young people to tackle the conversations that teachers often avoid, because they find difficult or uncomfortable. And we do it very well according to our first year feedback and results. We have lots more to do.

'I personally go into schools and talk with young people about sexual health and HIV, frankly, honestly and openly. Young people are always interested, engaging and willing to listen and think about what I have to say. They present a real opportunity to counter stigma as we raise their self awareness of their own sexual health.

'Through my work with Think2Speak and charities such as Terrence Higgins Trust, I encourage conversations to eliminate the stigma around proactive, responsible sexual health. The stigma around talking about sex.

'We now have a generation with no awareness of the tombstone campaigns, no knowledge of icebergs or the death sentence that HIV in the eighties proclaimed to be. We have to now capitalise on that.

'Let us encourage people, young or not so young, to have healthy, happy relationships, emotionally and physically. Please let’s make that happen now, for our future generations. A future generation free from HIV.'

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