Last week I was asked by Prof Jane Anderson, adviser on Sexual Health and HIV to Public Health England  to speak as UK-CAB chair to a group of researchers, statisticians and advisers who work on HIV. The idea was to explore ways in which we could create a community of practice, and how Public Health England  could be more directly accountable to the ‘HIV community’

Here is the presentation.


I am here to talk about the experiences of people living with HIV. What does it mean to be an ‘expert patient’? People with HIV are very diverse , we are men and women,, gay men and, trans women , young people, we are people of color, people who use drugs, people who are migrant, people who are incarcerated, people who do sex work , older people, young people who were born with this virus. It is always an honor and a challenge having to represent so many identities and try and speak of what we have in common and what unites us, as much as what is special, unique and individual to each of us and each of our ‘group identities’.


People most affected by HIV have, from the onset of the epidemic, belonged to groups who have less power in society, who are marginalized, and considered  ‘other’, or deviant. Since the ‘80’s HIV was linked to homosexuality, to drug use, to sexual ‘promiscuity’. At the beginning of the epidemic , it was linked to the three ‘H’:  Heroin users, Homosexuals and Haitians . Those are all identities which mainstream society looks down to, and judges in a negative way.  This partly explains why stigma affects people living with HIV so profoundly. Whenever I speak to people living with HIV and ask them what is the most important issue  that affects us, what it is that we really need to change we all say: ‘Stigma’.


Here is a quote  from a person living with HIV which speaks of how the negative judgement we encounter in society affects our self esteem, and how perception of our self. It goes very deep, and most of us living with HIV have struggled with it at one point or another. The slide comes form Nadine Francis presentation on Self Stigma and mindfulness: 


However stigma is not just about how we feel about ourselves, it is not just in our heads. Stigma and its manifestation: discrimination, create a real barrier, in the real world,  to access services to which we have a right to.


In the UK in 2014, HIV is still linked to poverty and deprivation.  (PHE 2014). Living with HIV can be associated with an individual’s ability to work, financial difficulties and social challenges such as residential status. The wider social determinants of health should be addressed in order to reduce these inequalities and furthermore, reduce transmission among these populations. (I just loved showing PHE their own slide!)


The UKCAB was set up with the aim of creating developing and support a strong community of treatment activists.

Quarterly meetings give us an opportunity to get updates on treatment and care, focus on key issues, meet with doctors and other healthcare workers and also. meet with pharma and ask them questions on their research agenda and pricing policies. .

Once a year we have a 5 days residential treatment activist training. The training covers trials design, statistics, virology, effective meeting and representation skills. Understanding NHS structures, public speaking and more..


I would like to look at the components of our care, which ideally should be tightly linked to each other. What is important to us?


Prevention is important to people living with HIV. Many of us have HIV negative partners and we want to ensure they can stay healthy.

Stressing the importance of quick access to PreP alongside other interventions.

Important support around drug and alcohol use in LGBT communities

One size doesn’t fit all we need to make informed choices on prevention methodologies.


Testing should always be done with full respect of human rights, obviously, and no coercion.  At the same time as a community we welcome easily accessible testing, community testing and self testing kits

Testing needs to address high levels of undiagnosed HIV especially among men (outside London  BME men 51% undiagnosed! BME women 41%)

One of the greatest barrier to testing is stigma and fear still associated with HIV, Anti stigma campaigns need to run closely with testing campaigns

It is crucial that people can access support  as early as possible after testing. in the UK we have been quite good at this, but we will need to work hard to maintain it.


Peer Support at the moment of diagnosis is crucial as people need to process an enormous amount of new information. It is important that things are explained in a language and at a level that is appropriate.  Importance of having positive role models top address stigma and self esteem.


As we now are expected to have a normal life span the issues around on going care are numerous and complex. This is not an exhaustive list. Self-management skills and peer support continue to be critical especially  as people live with other chronic conditions on top of HIV.


So ideally all those components of care would be tightly linked


However the reform of the NHS means that the components of care look more like this. This creates a real challenge for the ‘expert patient’ with limited time (possibly chronic fatigue…’) . Engage  with who? How to be most impacfull ?


I would also like to share with you this poster produced by the International Community of Women Living with HIV. The poster is like a scaling of meaningful participation. With Tokenism at the bottom, to real participation, where women living with HIV are able to set the agenda and our ideas are included in the planning, implementing and monitoring on projects.

When I do advocacy skills workshops with women living with HIV I ask women where would they put themselves on the tree and it is very rare that women put themselves above 3… I would invite you to also look at the tree and see where would you put the involvement of people living with HIV in the work Public Health England  does.


When looking at what matters to people living with HIV, and the context that may facilitate or hinder our engagement we also need to look at the global context. WE CAN END AIDS has become the new mantra for UNAIDS and it is closely linked to its ambitious  90-90-90 targets.


The UK is not doing so well on the on 90-90-90 targets, . especially around testing. A lot of effort will be put so that the UK can reach those target. However I believe that those targets can only be met if  other aspects of social care are addressed.

1) Unless we address poverty. It is very hard to achieve an undetectable viral load without secure housing and enough to eat.

2) Peer support is essential for both emotional support and for sharing information at a level which is suitable

3) Basic understanding of HIV and treatment literacy is also crucial as most of us will spend the rest of our life taking treatment. I speak to lot of people who don’t know the name of the medication they take or how HIV affects them. In order to self manage effectively we need treatment literacy. This is why UKCAB is so important.

4) We need to support people to be more open about their status and not live under the burden of secrecy as this has a huge effect on their mental health. Moreover stigma grows on silence and ignorance. As more people feel more confident to talk more openly about HIV  there will be a reduction of stigma, which is  the number one problem for people living with HIV.


Those are the elements that need to be in places for expert patients to be effective. It is not really a step by step program but all parts need to be there organically.

I would like to stress especially the importance of peer networks such as the UKCAB, which provide collective voice and expertise beyond the individual. People are engaged at a level that they feel comfortable with. In a survey of our membership the majority of members didn’t want to be actively involved (for example become community representatives) but they really valued the information shared and opportunity to input via the forum.




One thought on “Living with HIV and Being an Expert Patient

  1. Thank you for this beautiful piece of information. It is sometimes very confusing to grasp why we exist as a community group of HIV persons. But as I read through this mail. I got the peer support element and the general care sector. It gave me a reason to lead this Association a step further. Stigma in itself is self inflicting because we try to evaluate what the other ‘human species’ think of us. I hate to put it that way but that is about how I see it as an HIV infected human. It’s no easy to fit. I thank you for this information shared.

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