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.