Thursday, November 8th, 2018
by Silvia Petretti, Joint Interim CEO
In February 2017 as I was doing a regular check-up at my HIV Clinic I was asked if I wanted to fill in the Positive Voices questionnaire, produced by Public Health England (PHE). It was quite a bulky booklet; it looked time consuming. But I was offered also a high street voucher for £5, and I had some time to spare as I was waiting for my meds, so I filled it up while sitting in front of the pharmacy.
There were many questions on all aspects of my life: from my experience of the HIV clinic and other healthcare services in general, to more personal stuff, such as other health conditions I may live with, mental health, loneliness, violence, alcohol and drug use, experiences of stigma and discrimination, finances and more. I always find those kinds of questionnaires hard to deal with, especially if you are feeling fragile (and most of us do feel fragile on a dark February morning, during a hospital visit, even if it is a routine check-up). Recalling negative experiences can be quite triggering, and many of us living with HIV have experienced trauma in our lives. Post-Traumatic Stress Disorder is not uncommon. However, I knew it was important that the life experiences of people living with HIV are heard, and that there is much more to having a good quality of life than just an undetectable viral load and good CD4 Count. I diligently answered all questions, and rewarded myself with a lovely hand cream from Boots with my voucher.
Over 4,400 people with HIV from England and Wales did the same, and answered the questionnaire in more than 70 clinics. Respondents came from all walks of life and provided a good representation of the diverse groups affected by HIV (MSM, BAME, women, trans people etc.) Through our answers we helped creating a very accurate snapshot of what living with HIV is like in England and Wales today.
I am aware that even without doing much I have always been the ‘object’ of research, and so have all the other over 106,000 people who share their lives with HIV in the UK. For example, our data, anonymised, is included by our clinics when they report every year how many people have been diagnosed, how many are on treatment and how many have an undetectable viral load. This information is included in the national yearly report by PHE released every year around World AIDS Day.
So much research is done on us, as people with HIV, but it is still very rare that we are directly involved in analysing it and actively sharing ownership with the researchers. Positive Voices has been different. The leading researchers behind the survey, Valerie Delpeche and Meaghan Kall, got in touch with Positively UK at the end of 2017 to see how we, as the UK leading peer support organisation by and for people with HIV, could facilitate the process of community ownership and interpretation of the data.
Through PHE, we got in touch with people who had answered the survey and who had said that they wanted to get involved. These respondents were invited to events co-facilitated by Positively UK’s Peer Mentors, who are people with HIV trained in mentoring and group facilitation. These stakeholder’s events included input from other organisations: Watipa, which provided expertise in linking our stories and lived experiences to the data, and the National AIDS Trust who worked with us focusing on what needs to change, finalising policy recommendations and writing the three reports. It was a truly collaborative effort with people living with HIV at its centre.
Having worked in HIV peer support for almost 20 year what surprised me was that most of the respondents who came to the stakeholder’s events were not our ‘usual’ service users. Many of them had never used support services before, or spoken to someone else living with HIV. Many were compelled to come forward because they wanted to ensure that their lives and experiences mattered, and that they could be part of making things better for everyone. There was a clear intention from all of us that we did not wish to be solely ‘objects of research’. Behind the numbers from the survey are our lives, and we are best placed to make sense of them. We are reclaiming our agency, overcoming any notions of victimhood, despite the challenges many of us continue to face.
Overall Positive Voices paints a nuanced picture of our lives, from a medical point of view, especially as far as HIV is concerned, we are doing well and we appreciate the excellent HIV care the NHS is providing for us. However, many of us are struggling: 1 in 10 said that they had not told anyone about their HIV status other than healthcare professionals, 14% of respondents experienced discrimination in the NHS in the past 12 months. Mental health problems are reported by half of people living with HIV, twice the rate of the general public. Peer support is recognised as vital for tackling isolation and maintaining wellbeing, yet it remains underfunded and often unavailable to those of us in rural areas, where staggering levels of loneliness were reported.
What became clear, as we listened to each other’s stories and looked at how they illuminated the data that came from Positive Voices, is that the biggest challenges we face are rooted in negative attitudes and misconceptions around HIV. HIV is no longer a death sentence: with access to treatment, care and support we can live healthy and productive lives. Moreover, when we are on treatment and the virus is undetectable there is zero risk of sexual transmission to our partners.
We have taken the first steps of producing a Changing Perceptions campaign because we want to transform how people feel and think about HIV. We know that there is lot more to do and we hope that we will continue this work. We have plans to produce some short films based on our stories, to educate our peers, to inform policy makers, and to inform and challenge those who still discriminate against us in the NHS, and in the general public.
Another important lesson I gained from this process is how healing and therapeutic collective peer engagement can be. As we examined, compared and reflected on our stories, as we offered each other support and gained insight in our own lives, the most inner layers of stigma, self-stigma, our negative perceptions about ourselves and our own value, started to finally dissolve. For example, a person came to the first event not having told any of their friends about having HIV, having been diagnosed for 3 years. By the end of the project not only they had talked and received support from close friends and family, they have moved on to speak at a parliamentary event and challenged policy makers to do more to address the high rates of late HIV diagnosis.
Storytelling is such an important human activity and it has been used since the most ancient times to develop learning, create insight in the diversity of human experiences, and ultimately generate compassion and reciprocal understanding. Let’s hope that we will continue to create opportunities for our stories to be heard.
I would like to acknowledge and thank every single person who responded to the survey, and especially those who shared their stories, either through the comment section in the survey, or from participating to the creation of Changing Perceptions reports. I would like to thank all the people living with HIV and peer mentors who came forward and wanted to be photographed. I would like to leave you with Gabriel’s words, one of Positively UK’s peer mentors who supported the reports:
“For me it was important to give a face and individual voice to what people usually see as only the virus. I hope the project will make people understand that there is a lot of work to be done to eradicate discrimination and address the fears and hurdles that we need to overcome once diagnosed with HIV. The cuts that I have seen across the clinics and charities that made it possible for me to carry on a dignified life, are now limiting access to vital support. I hope ‘Changing Perceptions’ will address all the issues that we are still facing”
A special thanks to Viiv and Gilead for supporting Changing Perceptions
Tuesday, September 25th, 2018
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 firstname.lastname@example.org or 02077130444. Reasonable travel expenses will be covered.
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.
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 King, Peer 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.