What really matters to people living with HIV?
Well, if you ask me, and quite a few positive people I know, having a pleasurable and safe sex life and, for some, starting a family come to the very top. It seems this is an area of our lives where HIV can have a really negative impact, if badly managed.
One of my concerns looking at the draft document circulated for the Standards of Care is that there were not really any indicators for Sexual and Reproductive Health and Rights. The main focus on the paper was on avoiding onward HIV transmission. Obviously everybody agrees with this. Nobody in a sane mind wants to see an increase in transmission of HIV. However, this is a limited approach. We cannot just stress what we want to avoid, I believe we need an affirmation of what we want in its place.
I will never forget when I was newly diagnosed and I asked my doctor about pregnancy: she rolled her eyes and everything in her body language expressed disapproval, even if she told me that I could take AZT during pregnancy to avoid transmission. Because of this I totally put pregnancy out of my mind. I think things could have been very different if she had told me in an uncompromising supportive way, looking in to my eyes and with a large smile on her face: ‘Yes you can have children, and it can be totally safe. People living with HIV can conceive without passing HIV to their partners and have healthy babies. Everybody here in the clinic will support you in this process. We are here for you’.
I know that even today the pregnancy journey can be filled with anxieties for women living with HIV, and this can deeply affect our mental health and consequently the baby’s health. This could be avoided because we know that peer lead projects, such as Positively UK From Pregnancy to Baby and Beyond – lead by Angelina Namiba- can play an important role in making women living with HIV have a happy pregnancy, just like any other woman. This approach can improve the woman and the baby’s quality of life enormously. However funding for our project is too scarce to keep Angelina working on it. And many women living with HIV still go through extremely stressful times while they try to conceive or are pregnant in the UK. We could easily avoid this!
And it is not just about having a baby it is also about having the sex we want and we enjoy. Most of the time at the clinic at the best they pass you a few condoms, if you are lucky and you ask you may get a female condom. But nobody really has the time or the skills to talk to you about your sex life. This is obviously much more the terrain of peer support groups. Moreover, nowadays it is not just about using condoms is also about understanding treatment as prevention, Prep, PEP, and the combination of interventions that can contribute to avoid onward transmission. This stuff is complex and difficult to get to grip with.
Because of all of this I believe that upholding our sexual and reproductive health and rights should be an important heading in the standards of care of people living with HIV. Avoiding onward transmission could be one of the indicators. But an important indicator should also be referral and access to specific peer support services which can give complex information in a form that is easily understandable and can address those issue in an empathetic, structured and effective way.
What do you think? Do you know of other good indicators for sexual and reproductive health, or quality of life?