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LIVING2016 Pre-conference

Two days with 270 people from 78 countries all with one thing in common; each one of us is HIV+.

I am guilty. I am incredibly privileged.

I was aware of how privileged I am; living where I live, the access to treatment and care that I have, being white, being educated, being cisgender, being heterosexual, the list goes on and on.. LIVING2016 amplified each and every one of these. I am often quoted as saying that I am thriving, not surviving, with HIV, but I am wholly aware that this is not the case for many. For many at LIVING2016 surviving is key. I had my eyes opened.

Without therefore being flippant, I did find the regular assumption throughout the whole trip, that I was a doctor or medic in some way became rather grating; often those who know full well that the virus doesn’t discriminate, were doing so. There were a handful of ‘us’ present, the minority that I sit within – heterosexual white women, and we’d all been questioned or had assumptions made as to why we were there. ‘We’ simply don’t fit into the key populations or the high risk groups.

One high risk group that it was great to hear from, although not enough was heard in my opinion, was the transgender community. Bearing in mind that the transgender community are massively disproportionally affected by HIV; 49x higher than the general population, and as a group they are routinely ignored, removed from data, statistics, research and pilots. The numbers are still growing too fast, the services are still being too restricted, the violence is increasing and the action is reducing. Here it was clear – it is the grassroots organisations fighting the fight, championing the needs and wants of their community, frustratingly shouting upwards so needing to be heard.

I also listened to an ‘international’ sex worker whose parting comment summed up the content of her talk – not one of us can judge or stigmatise those who choose sex work…

‘Every one of us in this room is a sex worker; either pre-paid, pays as you go or on contract’

Then came Jessica Whitbread! Oh my she’s awesome! I’d heard about her before the conference as she hosts ‘No Pants No Problem‘. Jessica got us talking about sex, sexual pleasure and sex positivity – starting us all off with the question – When did you last attend a conference for people living with HIV, and felt sexy? The standard rhetoric when discussing sex for positive people is focused on reducing transmission, the clinical data and tends to perpetuate the ‘fear’ and stigma, keeping ‘other people safe’.

It was great to hear the stories of relationships, serodiscordant (such as mine – one negative, one positive) or otherwise, the great sex and the sexual pleasure we’re all rightfully embracing! There was little talk of the PARTNER study, which surprised me. I am painfully aware that the study assumes access to consistent treatment and having achieved a sustained undetectable viral load. Dang my privilege klaxon. The 6 year study’s findings were published just before the conference and showed no linked HIV transmissions in PARTNER study after couples had sex 58,000 times without condoms! I feel that the study’s results are massive turning point in the conversations, narrative and shifting the rhetoric. The results give weight and data to disrupt the messages in the ‘marketing of HIV’ in the sex and relationships, and awareness arenas. Read more about PARTNER Study here.

Read more about Jessica here.

“LIVING2016 was the greatest experience for me. I met amazing people from different countries and backgrounds who are living positively with HIV. It truly touched me to be in a room full of people, feeling safe and supported to talk about my life with HIV.” It is just one of the many reactions we received from grateful participants of LIVING 2016, the Positive Leadership Summit which took place on 16 and 17 July in Durban, South Africa.

270 people living with HIV from 78 countries contributed to the success of LIVING 2016. The Summit amplified many of the hopes and concerns discussed during AIDS2016, the 21st International AIDS Conference held in Durban, South Africa. Treatment, Rights and Resources were the three main themes of the Summit.

“Discussions and exchanges during the Summit were of the highest quality. I recall thinking that with our combined experiences we can really end the epidemic, “ says Prudence Mabele, National co-chair of the LIVING Summit.

At the Positive Leadership Summit important discussions were held around criminalisation, self-stigma, research tools driven by people living with HIV and the linkages between HIV and sexual and reproductive health and rights services. Perhaps the most burning questions were around how to approach universal treatment in a time of reduced funding and how can networks of people living with HIV can contribute the most.

Crisis or Opportunity
Globally, we are targeting the end of the epidemic, but we do so in a setting of scarce resources. Networks of people living with HIV are struggling to be funded and our programming is suffering.

The movement of people living with HIV needs to join forces along a common and ambitious vision and purpose. We need solidarity amongst ourselves, and we need to be inclusive of all key populations. We can turn crisis into opportunity by defining and reiterating a collective strategy that clearly articulates what people living with HIV can do. We have to claim our role in supporting treatment literacy, access, and adherence.

Sustainable Financing
Ending AIDS by 2030 costs money. With international funding agencies focusing on the poorest countries, more and more countries will need to finance the treatment of their own citizens. While the prices of first line treatment have gone down significantly, second and third line treatment are often still high.

The changing funding streams also means we need to refocus our advocacy efforts. Networks of people with HIV are well positioned to monitor domestic HIV investments, including signaling where it goes well and where it does not. For example for sustainable domestic financing to work, legal environments must be conducive especially in countries where key populations are criminalised and governments do not provide quality services for key populations.

HIV treatment literacy
With the increased focus on treatment, challenges regarding treatment access and literacy are coming to the forefront. Aiming for HIV testing and treatment for all carries a risk of rights violations when it becomes obligatory. It also means safe and cheap ways of checking for viral load, CD4 count, resistance and side effects have to become universally available so treatment can be tailored to the person.

These challenges are some of the central issues of LIVING 2016. There is no place for complacency and failing to end AIDS is not acceptable. People with HIV need to claim this target and their central role in making the HIV response successful. The visions and experiences of the leaders who joined the Summit will form the basis for a global strategy to make that happen. Please stay tuned for the LIVING 2016 report and the next steps!’ Read more here.

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A conversation 

Today I had a conversation with a member of the NHS. Part of it went like this…
NHS employee: So didn’t you know your husband was gay when he died?

Me: He wasn’t my husband, he was my partner and the father of my child. He wasn’t gay.

NHS employee: Well how did he get it (HIV) then? Did he have a blood transfusion?

Me: I’ll never know but he had had unprotected sex. We had unprotected sex and I became HIV positive.

NHS employee: Yes but who gave it to him then?

Me: I assume, but will never know, someone who had sex with him.

NHS employee: So how long til you get full blown AIDS? Sorry if it’s a stupid question but I’m quite ignorant about all this stuff. 

Me: Inside my head – no shit Sherlock. I’m sat chomping my tongue off by this point! 

Now I was able to calmly (ish) respond to these questions and signpost this individual to information to learn. I also intend to write to the department formally and make some recommendations! 

Fuming. We have such a long way to go. 

Filed under: HIV
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HIV the basics

It has become apparent that we still have such a long way to go. Many many people connected to those in my life don’t know the basics. The basics of living with HIV in 2016.

For those willing to learn and educate themselves, THT offer a wealth of resources: http://www.tht.org.uk/

Please take a look. Thank you.

 

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Ten years

Today feels like a ‘big’ day. It is ten years since ‘that day’. That day that everything changed. A whole decade. Ten years since my Grandpa collected me from Hull Royal Infirmary and I was driven away leaving Benji inside the hospital.

Benji died ten years ago today; 29th March 2006.

The last couple of weeks I’ve been very aware that today was coming. Conscious that it seemed a ‘big’ anniversary; there is no rhyme or reason why any one particular anniversary year should be anymore worthy of stirring up a myriad of emotions than any other year. That being said, grief likes to work that way, and if there is only one thing I now truly understand about grief and grieving is that it defies logic and reason.

So today – I am simply taking each minute as it comes and that and that alone will be today’s achievement.

Filed under: HIV
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Double DD’s, Potatoes and Prozac

The title isn’t quite accurate – I don’t really have any of those three things in my life – the double DD are no more since losing weight, potatoes are no more and swapped out for sweet potatoes and I weaned myself off the antideps a couple of years ago.. but never one to let the truth get in the way of a (blog) story et al…

I’ve written, and spoken, about my sexual health on numerous occasions – and this blog has, by default, become another avenue for me to bang the ‘sexual health drum’ – it’s a subject I can talk about, do talk about and will continue to talk about.

But one area that I battle every blooming single day – and yet I’ve never written about ‘it’. I struggle to voice ‘it’ even. ‘It’ being my mental health. We all have ‘it’ – ‘it’ is on a sliding scale of wellness. I admit it – mine wobbles.

I am a people pleaser, incredibly independent, often stubborn and occasionally selfish all at the same time. This comes as some what of a challenge. That being said I like challenges. I thrive on challenges –  they seem to push me into new directions, yet they also cause me wobbles.

It is also probably fair to say – the last ten years has included quite a few challenges and wobbles – some minor and some fairly epic on the scale as scales go. Each challenge has also brought me amazing opportunities and hindsight really is a wonderful thing.

Last September, after months of wrangling with my inner angst at asking for help, I went to see the GP. I needed help. I wasn’t sure what help or what I was asking for, but knew I needed to admit that I didn’t feel on top form. I’d got to this point once before years ago and was very swiftly packed off with a prescription for antidepressants and that was the end of that.

Recounting to the GP who I’d never met before the events that had lead to me being sat there, his face fell. He simply said ‘One of those events would require you needing significant help Lizzie, so all of them combined is really quite something that you’re still here at all.’

Gee – thanks for that. And yet this is where the NHS system falls flat when addressing ‘mental health’.

A prescription wasn’t the answer this time. I was referred. I had a telephone assessment. I ticked the boxes for ‘clearly needing help’. I joined the waiting list. And that’s where that story ends. Here we are in February and apparently I’m still sat on some waiting list – 6 months after mustering all the courage I had at that time to ask for help.

I haven’t chased the list – the ‘therapy’ that they offer is time limited (a session a week for up to 8 weeks) and wanted me to clarify ‘a goal to measure how I felt better’ – CBT I believe. I am not certain I could rattle through the last 10 years events alone in the total of 8 hours max offered, let alone get across how I felt, feel and think. The thought of starting that process and then having to be reassessed and join the queue again is frankly quite ridiculous.

However, asking for help seemed to help in itself. Then November and December came along and life disappeared into a whirlwind – Think2Speak launched, World AIDS Day happened and school settled for Sprog. Life has been keeping me very very busy ever since.

2016 started and continues to astound me everyday; amazing opportunities, and therefore sometimes challenges too, keep presenting themselves. Juggling two businesses, HIV advocacy work, motherhood and then walking into a relationship means two days are never the same right now. The diary is getting increasingly booked up and I’ve chosen to put in ‘time for me’ – my way of having time out. Time for Lizzie.

I wonder if the referral will ever materialise?

 

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2015 Round Up

This year has been rather busy on the advocacy front – lots of interviews & story sharing, TV, radio, national press. 2015 saw Charlie Sheen share his personal story and status just before National HIV Testing Week and World AIDS Day resulting in 3 weeks of high media interest in all things HIV. The year also saw the demand for access to PrEP increase – this is high on the agenda for many in 2016, alongside testing, testing, testing. Read more about PrEP here.

So this year:

I’ve written some pieces for Beyond Positive here and been on two fabulous #PositivePubCrawl events in Birmingham meeting lots of friends, old and new. Organised by Tom Hayes, they are such a fabulous opportunity for people living with HIV. I wrote a blog post on ‘Why I go’ here.

 

 

I’ve been interviewed by the lovely Elle Tucker for The Guardian for this piece ‘Living with HIV: Six very different stories‘. Photographed for the piece by the fabulous Antonio Olmas.

I was approached to work with Gilead, pharma, to shape up a campaign they were working on. They approached the ‘8 highest profile advocates in the UK’  – of which one was me! The panel also included Patrick Strudwick, LGBT Editor of Buzzfeed, Josh Withey, Online Editor at Gay Times, Bisi Alimi and Matthew Hodson, CEO at GMFA. The resulting film My HIV, My Rules premiered in November and yours truly was asked to speak at the event and share my story. You read Jason Alvey review here.

The Saturday Show with Gaby Roslin & Matt Barbet – the Charlie Sheen story broke and so I was asked to come join them on the sofa. I got to also meet Claire Goose, plus Pollyanna Woodward, Rav Wilding, Jo Pratt and Alun John from Pomora.

 

Brigette Bard, from BioSure and I then spent a very hectic day doing a marathon of radio interviews during National HIV Testing week for various regional and national radio shows talking HIV and testing. We then whizzed over to London Live TV for a quick interview on the lunchtime news programme.

One BBC reporter managed to ask me LIVE ‘So you can’t have sex now can you?’

 

 

November also saw Naomi Watkins and I squeeze in the launch of Think2Speak CIC – a social enterprise helping teachers have conversations in the classroom. Read more about the launch event here.

 

World AIDS Day 1st December

This year was the first year I’ve ‘done’ anything on World AIDS Day 1st December. I was asked to join the Saving Lives team in Birmingham and to be interviewed for an ITN news piece they had lined up. Was a hectic day – dropped Sprog at school, headed up the motorway to Birmingham ready for an interview in the carpark over the phone with Melvyn Prior for BBC Radio Lincolnshire. Then it was straight into the studio for updated shots for Saving Lives promo stuff, followed by a tour of the Saving Lives big red bus. The team had organised a bake off which I then took part in judging along with Dr Steve Taylor, Tom Hayes of Beyond Positive and former Home Secretary, Jacqui Smith.

I spent the rest of the day with the Saving Lives team on Hurst Street where they were offering HIV testing. I also visited the John Lewis community hub where they had a World AIDS Day installation.

The evening then saw the procession through Birmingham up to the Cathedral for a most beautiful service, reflection and celebration.

 

 

Christmas Eve

Bringing the year to a close was a piece Standard Issue ran on Christmas Eve where they’d asked me to share my story –  What’s in a label?