HIV holistic health word cloud. Image: Nell Osborne, Salamander TrustNext week the annual International AIDS Conference opens in Durban, South Africa, attended by over 20,000 people from around the world. The scope of the conference alternates each year from being a pathogenesis conference with very little social science input, to the one this year which includes community issues as well as science. This one has three largely scientific tracks, two largely social political and economic tracks, and one “cross track”.
The conference theme this year is “Access, Equity, Rights Now” and there is already huge tension in the air around at least two issues. Firstly, there is the question of who may have these rights. At the UN High Level Meeting in June, there were considerable gains in recognition of women’s rights and the widespread harms of gender-based violence, such as in its capacity both to increase vulnerability to, and to result from, HIV. However, he meeting was also deeply marred by the exclusion of key populations - including lesbian, gay or bisexual people, trans* people, sex workers, people who use drugs, and others - from the process, and the limited recognition by UN and many governments alike of the issues these people face.
Secondly, there is the question of what aspects of this conference theme people might gain access to. There is tension here because it has now been recognised that HIV medication taken by someone when they don’t have HIV can protect them from acquiring it. So there is a huge push for roll-out of this Pre-Exposure Prophylaxis (PrEP), from scientists and community activists alike. This is so that anyone who may be vulnerable to acquiring HIV might avoid doing so. Yet here is a slippery slope scenario. I have described this scenario in an earlier article on openDemocracy before in the whole debate around treatment as prevention (TasP), where people with HIV, especially women in the case of “Option B+” are encouraged to take HIV medication primarily to protect others.
The new slippery slope now starts with the principle of individuals being offered well informed choice over if, when, and how long to take medication in the context of personal bodily autonomy. These well-intentioned strategies can quickly morph into a situation where individuals are being told that this is what they should do, and they can find themselves scorned and damned if they don’t.
Once again, with Pre-Exposure Prophylaxis (PrEP), as with Treatment as Prevention (TasP), we are looking at a double-edged sword: there is the risk that medication is seen as the simple magical bullet, without consideration of the power relations involved in who gets to choose what is put in their own bodies – and the potential negative and positive consequences for them, both if they do, and if they don’t.
Although the science now tells us that all of us who test positive for HIV should be encouraged to start on HIV medication straightaway, including PrEP for those who test negative, we humans have a complex relationship with medication which can’t be set aside. In particular, for the majority of women living with HIV, it is not just a question of the effects of the virus versus the effects of the drugs on our bodies: there are also the fundamental factors of gender-based violence and mental health in the equation.
I was lucky enough to be able to choose when to start my own anti-retroviral treatment (ART). I waited for 8 years after I was diagnosed in 1992. Whilst I believe in the critical importance of treatment when someone feels ready to take it, I was not ready to take it before then, and may well not have managed to adhere to it as religiously as I have since 2000. It makes good gardening sense to prepare the ground before planting, to give seeds their best chance of survival. My very good health now means I do not even have to pay an HIV-related premium for my annual health insurance. So I am one example at least of where waiting until I felt ready for treatment has caused no apparent harm and may well have had a better long-term result.
Until scientists include such key psycho-social factors in their trials, their findings are not yet fit for real life implementation. One simple example of this is the question of how women on PrEP are supposed to protect themselves from unplanned pregnancies and other sexually transmitted infections without continued condom use, since PrEP only prevents HIV transmission. Yet to date I have seen little substantive discussion of this. The question of who owns the rights to an individual’s bodily autonomy once again becomes a stomping ground for those institutions or people with power – and pity help those without it.
During this World Aids Conference openDemocracy will be publishing several articles addressing these on-going enormous challenges and others. However here I want to look at a wider perspective that is rarely mentioned - one that embraces the whole person as a sentient being, rather than one that views us just as passive recipients of medical interventions. Holistic healthcare is not new at all: traditional Chinese holistic approaches to healthcare have been around for millennia. But it is still very slow to be accepted by mainstream Western practitioners. Yet I am just one of many living with HIV who rely not just on our medication, but also on keeping a close eye on our diet, our exercise regime, and other stress-relief practices such as yoga and meditation and other spiritual practice – in its widest sense.
Some HIV doctors and policy makers deride our interest in these complementary approaches to health and well-being as irrelevant at best, and really quite threatening at worst - dismissing them as subversive to the treatment roll-out mantra. Yet how can someone who does not even have adequate, let alone nutritious, food in their stomach, be expected to start and stay on treatment?
Hippocrates wrote “let your food be your treatment and your treatment your food” 2,400 years ago. Yet the most recent World Health Organisation (WHO) anti-retroviral guidelines barely mention food, other than in one brief section.
One colleague, a medical doctor and psychologist living with HIV, Heidemarie Kremer, has taken another route, publishing research that studied 177 people with HIV over 17 years, which shows that some people using spiritual strategies were 2–4 times more likely to survive. When women’s capacity to start and adhere to treatment can be affected fundamentally by factors such as gender- based violence and mental health, then if spirituality can help to alleviate these challenges, surely that is a huge asset. Spirituality is something which resonates strongly with many of us. Yet there is no funding in this line of research, and Kremer has now had to abandon academia for other pursuits.
Another example of the wide breadth of riches that holistic healthcare has to offer, and the relatively tiny spot on this map that western healthcare offers, is provided by a wonderful book that my sister recently shared with me, that she learnt about at the Penny Brohn Centre for living well with cancer. This centre embraces a whole-life approach to cancer, alongside western treatment. Radical Remission, written by Kelly Turner, a Harvard and Berkeley trained psychologist, explores the nine most mentioned key factors identified by over 1,000 people with cancer whose stories she analysed, as alternative methods of healing: body, mind and spirit interventions which may have led to a statistically unexpected positive outcome for them. These factors include radical changes to diet, taking control of our health, following our intuition, using herbs and supplements, releasing suppressed emotions, embracing social support, deepening our spiritual connection and having strong reasons for living.
Since none of these factors have or can be subjected to the rigours of a randomised controlled trial (RCT), as all medication has to be, (and which scientists take as the gold standard for medical intervention), it is understandably all too easy for many western healthcare providers to dismiss these factors as quackery. Yet, as Turner explains, finding funds for an RCT of these factors, when they are normally funded by pharma (and no pharmaceutical company can see potential financial gains from patenting a specific trialled product), is nigh impossible, since it is thankfully not easy for them to take out a patent on a particular food or on yoga.
I am not trying to draw simplistic parallels between HIV and cancer here. Whilst some people with cancer really do manage to recover spontaneously, to date there have only been fourteen people formally recorded to be in remission from HIV. Whilst HIV scientists accept that they really seem to be “functionally cured”, they use their existence to call for more bio-medical research into an HIV cure, and for early treatment after diagnosis. There seems little consideration of whether other factors might be at play in keeping them well. I don’t think I am so lucky as not to need antiretroviral therapy (ART). So it will certainly remain a crucial part of my health strategy. I am just trying to explain that, as Kelly Turner states in her book, the pursuit of any or all of these complementary strategies will certainly not harm us, and may well enable us to stay happy, healthy and safe, when we decide if, when, and how long to take our medication.
It is not easy airing these sorts of things in public. Even in the world of cancer, a holistic approach to healthcare is still mocked by many. In the world of HIV, it is even harder to discuss these things. Sadly my sister was not one of those fortunate few who found remission. But she did take to cancer with curiosity and creative thinking – determined to live life to the full with it, rather than be crushed by it. Whilst recognizing the importance and value of conventional treatment, she also decided to learn through her experience of living with cancer, to develop further her spiritual growth within.,
If nothing else, I want to learn and to grow from both my sister’s and my own experiences. For me, “access, equity, rights now” include my ability to take a holistic approach to my own healthcare. The drugs are hugely important but they are not – and will never be - the whole story.
Read more articles in openDemocracy 50.50's dialogue on AIDS Gender and Human Rights