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Take Control, Learn, Connect!

Tuesday, September 25th, 2018

Recently Diagnosed Workshop

by Ewan Summersbey

Since I started working at Positively UK, I think one of the most rewarding pieces of work I’ve done is to be part of the team that delivers our Recently Diagnosed Workshop. I’ve been living with HIV for twelve years. It’s easy for me to forget the feelings of shock, fear, disbelief and confusion that often come with being told that you have HIV.

Working with people to help them come to terms with their HIV diagnosis and know that, in 2018, it’s all about living with HIV, is a privilege. It’s true that being on treatment means that you really can live as long and as healthily as someone that doesn’t have HIV. It’s true that having an undetectable viral load mean you can’t pass HIV on. However, none of that means that when you first find out, you won’t have lots of very different and sometimes difficult emotions. You will, and that’s natural.

That’s why we do workshops for people that have recently found out that they are living with HIV. The workshops are always facilitated by people living with HIV. You don’t have to explain to us about having HIV. We know what it’s like, even if our personal experiences are different to yours. Taking the time to work out your emotions is important. We spend time talking about what your diagnosis has meant for you. We explore what telling other people about your HIV really means. Lots of people come with the question, “Do I have to tell other people?”. We work that out with you. We look at your treatment and how to manage it. Some of our staff and volunteers are now treatment advocates, so we can answer lots of your questions. We even talk a bit about sex and relationships!

We call the Workshop ‘Take Control, Learn, Connect’. It’s a perfect name because we want you to be in control of your HIV and not the other way round. We hope that you will learn both in terms of information and in terms of tips. Perhaps most importantly, we want you to connect. Connection is so important. Some people with HIV end up feeling isolated. This workshop is just one way to break the isolation. In fact, we offer participants to be part of a WhatsApp group just for the people that attended their workshop. Many participants take up that offer and have both given and received support through it. One group we worked with recently now meet socially on a regular basis. True new friendships have been formed, and that’s been great to watch.

If you wonder if a Recently Diagnosed Workshop is for you, this is what some previous participants have said:

‘I often doubt myself, but to hear you say that you believe I’ve got this, gives me a fire and fight to be even more determined to make this work for me!’

‘A massive thank you for everything the Positively UK team did for me over the weekend, it was truly life-changing and I have left the weekend feeling completely inspired and motivated to continue to hit my goals.’

So if you’ve been diagnosed any time in the last three years and feel like you need some support, why not come along? I know I speak on behalf of the delivery team when I say we’d love to meet you and help you to take control of your HIV, and hopefully make some life long connections.

The workshop will take place on 13th and 14th October at Positively UK. Please reserve your place at info@positivelyuk.org or 02077130444. Reasonable travel expenses will be covered. 

Our Bodies Our Rights Our Choices: Dolutegravir Access for Women

Friday, September 7th, 2018

In July 2018 six members of Positively UK flew to Amsterdam to exchange views with other 20,000 activists, policy makers, funders, medics, researchers and pharmaceutical companies attending 22nd International AIDS Conference. Read the reflections of Silvia, our CEO and a lifelong advocate for women living with HIV.


by Silvia Petretti, Interim CEO

The first thing I saw, as I walked in the RAI conference centre in Amsterdam, was a group of African women chanting and holding placards “We demand Dolutegravir for Women” “Women choose what they want” “WHO listen to women, we want DTG”. The women were singing and dancing and protesting in the typical South African style developed by the Anti-Apartheid movement.  Songs and call and response harmonies filled the atrium, women moved with graceful steps, in precise dancing rhythm demanding, and getting, attention.  They were protesting about the warning on women using Dolutegravir, issued by the World Health Organisation (WHO) in May.  Dolutegravir (DTG) is a drug which has shown high efficacy, it is well tolerated and it is has a high genetic barrier to resistance. It is widely prescribed here in the UK, I have been happily on it for a few years!

However, in May 2018 preliminary findings of a pregnancy surveillance study in Botswana, reported an increased risk of neural tube defects among babies of women who became pregnant while taking DTG-based regimens.  The study reported 4 cases of neural tube defect out of 426 infants born from women who were taking DTG while pregnant. The neural tube is the early formation of what will become the spine, and it is formed by day 28th of pregnancy. However, the findings from Botswana still need more research. They came from an observational study, and we still do not know if there could be other causes to the neural tube defects, for example lack of folic acid.  More information will be available when more data will be analysed in 2019.

Following this preliminary information, a warning was issued by the WHO about prescribing DTG to all women of childbearing age.  The warning has resulted in governments of many African countries including Uganda, Kenya, Malawi and others, to take a top down blanket decision and deny access to DTG to all women, regardless of their preferences and plans around pregnancy.  Later during the conference, we were invited to a meeting with WHO and UNAIDS with women living with HIV from all over the world to discuss access to DTG.  What many women said was that, of course, we have concerns about side effects for ourselves, and when/if we are pregnant, the effects on the unborn babies, but we are not just baby making machines! Women need to be in control, and to have access to contraception to enable choices, alongside easy to understand evidence-based information. At the meeting I heard so many women talking about the horrors of side effects from old toxic drugs, such as efavirenz, which are well known for links to depression, instable moods, difficulty sleeping, bad dreams. Despite this they are still being denied DTG, even when pregnancy is not at all on their list of things to do, as they may be too young, too old, or simply not wanting children. What women want is access to good sexual and reproductive services which include contraception and to the most effective HIV treatment.

What is concerning is the extremely high number of young women in Africa who still do not have an undetectable viral load and who would benefit incredibly from access to better ARVs.  Martha Akello, communications officer of the International Community of Women Living with HIV Eastern Africa (ICWEA,) reports that for the young women she consulted with in Uganda, who had been switched to DTG, it meant that: ‘…. their lives had greatly improved because DTG has less side effects and has offered them the chance to live their lives in full once again, being able to work and fend for their families with normalcy’. 

Going to the International AIDS Conference and being part this debate was an important reminder for me that access to high quality treatment must be integrated with promoting choices and rights. For women access to ARVs goes hand in hand with advances in Sexual and Reproductive Health and Rights: our bodies our rights our choices!

WHO recommends that women of childbearing potential should receive dolutegravir if they have access to consistent and reliable contraception, but to ensure access to dolutegravir in practice, integration of sexual and reproductive health programmes and HIV programmes needs to be greatly improved.

More on this topic:

WHO Update on antiretroviral regimens and on early infant diagnosis of HIV

Dolutegravir-based ART recommended for all – if reliable contraception is available 

Giving HIV positive women dolutegravir way to go

 

22nd International AIDS Conference (AIDS 2018) Amsterdam, Netherlands.
Copyright: Marten van Dijl / IAS
Photo shows: At the conference: a demonstration asks for WHO to make DTS available for women

Inspired by the Activists of the International AIDS Conference. Nothing about us, without us

Friday, September 7th, 2018

In July 2018 six members of Positively UK flew to Amsterdam to exchange views with other 20,000 activists, policy makers, funders, medics, researchers and pharmaceutical companies attending 22nd International AIDS Conference. Read the reflections of David, a young HIV activist and peer mentor.


By David KingPeer Involvement and Volunteer Coordinator

The International AIDS society conference is the largest medical conference in the world. With over 20,000 delegates, speakers, funders and other groups attending. The scale of the event and the breath of people who come from all over the world is astounding. However, even more astounding to me was the lifeblood of activism which flows through the entire gathering. And it usually works in a way that disrupts and challenges how the conference functions.

IAS is unique in the world of conferences in that any activist wishing to protest any session at the conference, who comes up to the stage in protest, under the rules, is to be given the microphone and a chance to express their opinion for three minutes. No matter who is presenting on the stage. I witnessed President Bill Clinton, a juggernaut of global politics, forced to stand down and listen as a group of protestors came to the stage to protest the decision to host the next conference in Oakland, California in 2020. Throughout the conference key players are often challenged and held to account by people in our communities for their actions or inactions.

For myself, as a person living with HIV, to know that in the largest global conference about us, I can come to the stage and call out powerful figures who are not putting their money where their mouth is, was very empowering. I would not say that I found our voices to be of equal weight at the conference as influential doctors, researchers or pharmaceutical companies. The level of community engagement, and the voices of us living with HIV, often seemed tokenistic or an afterthought. But we have a place at a table, and respect to be heard out. It will require us to work together to make demands that represent us, but the foundations are there to make the most powerful people in the room listen to us. And maybe for us, people living with HIV, to understand the power we can have in shaping the micro and macro response to HIV, is greater than we perhaps realise.

I took part in two marches, linked to the conference, while I was there in Amsterdam. The first was organised by the ‘towards zero together’ campaign. The march had three main demands, to call for zero HIV criminalisation, zero stigma and zero deaths by eliminating barriers to treatment. In attendance were hundreds of community figures, people living with HIV and delegates from the conference. The atmosphere was palpable, the speeches excellent and it was empowering to walk through the streets of Amsterdam, with my colleagues, wearing my ‘Proudly Undetectable’ t-shirt, which I obtained at Pride in London earlier in the year. The second march was to highlight the effects of the law, globally, on sex workers and how HIV can intersect with this. Sex workers living with HIV, around the world face inflated risks of extortion and violence, discrimination under the law, and poorer access to treatments. More needs to be done to work with them and other key populations so that we can all live dignified lives with equal protections.

This power of activism at the conference was made apparent to me by the legendary South African activist group, the treatment action campaign and their bad pharma tour. A huge part of the conference is the exhibitor’s hall, where pharmaceutical companies, medical equipment manufactures etc have extravagant, expensive stands, exhibiting their products. Every day at 1pm, TAC collected everyone interested in attending and got them onto an imaginary tour bus. The ‘bus’ then drove into the exhibitor’s hall, causing a ruckus, shouting the words to the nursery rhyme ‘the wheels on the bus go round and round…’ before ‘driving’ up to some of the biggest names in the industry, Gilead, MSC, Roche etc. The staff at the booth would flee as the bus stopped, with participants flooding the stall. The TAC activists would proceed to climb up onto the stall with a megaphone and explain different examples of pharmaceutical greed and unethical practice, to the crowd and everyone in listening difference. For me, it was an incredible way to challenge these companies and some of the ways in which they work against people living with HIV. It reminded me that we are not servants to the powerful forces that affect the lives of people living with HIV globally, that we can challenge the powerful and hold them to account.

“Nothing about us, without us.” Is a phrase that is ingrained in me when I think about any discussion of people living with HIV, all of us must have a place at the table. Decisions about us should never be made without our representative’s present. And that is mine, and many others indignation when we talk about the next conference, in Oakland/San Fransisco in 2020.

Many of the most inspirational people I met at the conference were sex workers and injection drug users, living with HIV, who had the courage to speak openly and represent their communities. When we talk about the global response to HIV, we talk about the most vulnerable populations, Key populations, two of which are sex workers and Injection drug users. Those brave, inspirational, men and women, and millions of others living with HIV, cannot attend the next conference in America. Both groups are barred from entry into the United States. It is wrong, that the largest event in the world, where major policy decisions, deals and the sharing of scientific knowledge about us, people living with HIV, could be hosted in a place where we cannot attend. Where our voices cannot be heard, and we do not have a place at the table.

Nothing about us, without us. In the last 30+ years, globally, activists have put their lives on the line and in some cases died, so that people like me and you, living with HIV, are respected and involved in scientific research, policy decisions and the global response. It’s not right to host the IAS conference in a place where our brothers and sisters cannot attend, and have their voices heard.

I was inspired by the activism that I witnessed at IAS. I was reminded of the power we have as people living with HIV to influence decisions that impact our lives.  I will harness that and do what I can to challenge and boycott the hosting of the next conference in the united states.

I asked myself, how would I feel if I was unable to attend this conference, due to a simple fact about my life, which is nobody else’s business. That I was ineligible to be part of the largest global gathering of people like myself. To have my voice stifled and my chair at the table pulled out from under me.

Now I ask you, how would you feel?

Nothing about us, without us.