It is just over a month since my return from the International AIDS Conference in Washington DC and I have spent the past week reorganizing my notes. Watching sessions I missed and trying to distil the ‘juice’ of the conference to offer to my peers that didn’t have the privilege to attend.
Disconnection is one of the first words that come to my mind: disconnection between the world of policy makers and wielders of power and the lived experiences of women living with HIV.
The moment when this disconnection became more acutely visible for me was at the plenary session ‘Turning the Tide on Transmission’, when on the same plenary we had Linda Scruggs, an openly HIV positive Afro-American woman making a call for our direct involvement in the choices and decisions that affect us and UNICEF senior pediatrician Chewe Luo promoting Option B+ the new bio-medical quick fix to reduce vertical transmission of HIV.
In a nutshell Option B+ aims to test all pregnant women (with no mention of voluntary testing and counselling) and then put all those who are living with HIV on ARVs for the rest of their lives, regardless of their own health needs, regardless of the fact that research still hasn’t identified any further benefits for starting treatment before CD4 count is below 350. This ‘Option B+’ has only been carried out as an implementation intervention in the small country of Malawi, for just over one year. In Malawi it was shown that it worked: it prevented babies from acquiring HIV, mothers were in good health, and it was also emphasized that it had the added benefit of preventing transmission to negative male partners. Dr Luo summarized: it is simple, it is effective, and it is easy implementable.
I would like to stress that I am all in favour of taking treatment to improve our health, and staying alive, I have been on ARV treatment myself for over 14 years, and I would probably be dead otherwise. However, together with many other people with HIV from all over the world I believe that treatment should be initiated and continued primarily for personal health benefits. In the UK and all European countries pregnant women who are still in good health, with an high CD4 count, only take treatment during pregnancy and a few weeks afterwards, in order to prevent transmission to the baby, this is clearly explained in the BHIVA guidelines. Afterwards women can stop, and wait, sometimes for many years, until their immune system is weaken and treatment is needed. It has been questioned if this is feasible in low income countries. The cost of monitoring tests has often been seen as a big obstacle. But is it really true that we can test and treat all pregnant women, but we do not have the resources to monitor CD4 in Africa? Thanks to a very low tech test developed by the Imperial College it is possible to offer a CD4 test for less than $10. I am not an economist, but I am sure that from the money saved from putting on treatment people who do not need it for their own health it would be possible to fund a couple of CD4 count a year for all, and especially pregnant women who receive a positive HIV test.
When I came back to my office to share this bit of news with my team of peer case workers they were all horrified. My team mates were all asking: what has happened to choice? Do they know about side effects? Do they know how daunting it is to take treatment for the rest of our lives, especially if you have been newly diagnosed? How do you take treatment if you have not disclosed to your partner or other family members? What about women who are in violent relationships and live in fear? What do you do when you have not enough food to eat with your medications? What happens if you develop resistance? Is there going to be second and third line treatment? What about interactions with other medications? Would they ever do this in London? Within the team we have decades of experience supporting women being on treatment, many of us are African, and we know that high levels of peer support are needed to stay on treatment and manage many of the psycho-social issues that come with an HIV diagnosis. I can assure you that there is a lot that goes into swallowing a handful of pill for the rest of our lives.
I believe there is no reason why we cannot aspire as HIV positive women from all over the world to put our own health and the health of our babies first, according to our choices. So dear heads of UNICEF, WHO and UNAIDS, I know that the model implemented in Malawi has an elegant simplicity, but it is so far removed from our lived realities of taking treatment every day.
I doubt you would ever come to my North London Hospital, the Royal Free, and enforce something like this on us, because there would probably be an uprising. But it is easy to do this in countries where most positive women are in incredible poverty, live in fear of discrimination from health care providers, where our networks of positive women are for ever underfunded. It is very nice that you come and share the big stages of those International AIDS Conferences with us, but what we are demanding is that you really connect with us and our lives. We want you to listen to what we have been saying for years, as Anna Sango, a 24 years old Zimbabwean woman living with HIV, said in the opening ceremony.
How many times do we have to say: meaningfully involve us at all stages of programming. We cannot be just an afterthought at implementation level for your short sighted top down plans. We have a wealth of knowledge and experience that will truly fertilize the planning programmes, their successful delivery and their monitoring. For our health and the health of our communities there is another option: connect with our lives.
If you want to know more about those issues please read Dr Alice Welbourn article: An HIV-free generation:human science versus plumbing