Bisi Alimi is an internationally renowned public speaker, storyteller, television pundit, actor and activist, with expertise in sexual health, human and LGBT rights. He began his HIV/AIDS advocacy career in the late 1990s, working in community mobilisation and programme management in Nigeria, before moving to the UK in 2007. He is currently the Executive Director of the Bisi Alimi Foundation, co-founder and director of Rainbow Intersection, a dialogue about race, culture and sexuality in Britain, and co-founder of The Kaleidoscope Trust. In our first blog post, Philippa Macnair from the TEDxLSHTM communications team talks to Bisi about HIV activism, treatment and prevention.
There have been huge advances in HIV treatment and prevention over the past few years – with drugs such as PreP and new-generation ARVs meaning that transmission can essentially be halted. What impact do you think this has had on the public perception of HIV today?
I acknowledge this great scientific achievement and I can say to a great extent it has changed the landscape on HIV prevention and treatment. However, what it has failed to cure is stigma and since stigma is not a thing that can get cured with drugs we are faced with a new form of epidemic. These days, people living HIV are not afraid about dying anymore, the fear is being discriminated against or not getting the best support at work or among families and friends.
There are also the unintended consequences of PreP that has raised the question about the increase in STDs among gay men. Now don’t get me wrong, I am strong supporter of PreP and I was supporting it here in London when a lot of people who are jumping on its bandwagon now were against it. However, one important message we are not giving out is that PreP can only protect you against HIV and not against other STDs. We need to have that conversation with people and not let people get caught up in the fantasy of illusion of protection.
But I think for me, while to some people it is not a big deal to be HIV+, depending on which part of the world you live in, the shame and stigma that comes from being positive is still very high in our society and we are not really having that conversation.
Many of the breakthroughs in HIV/AIDS have been driven by activists – from the work of groups like ACT UP in the 80s, to the court challenge that led to the PREP trial today. How do you see the role of activism in public health – do you think it has changed in the years you have been involved?
Nothing has really changed, we still have most victories being won in court. Politicians love dogwhistle politics and it doesn’t matter where in the world those politicians are. They are like lightweight. It doesn’t matter what the issues are. There are very few politicians who are into politics because of principles, a lot of them are there because it is about populism. Hearing the discussion leading up to the US and UK elections and the classification of establishment and populism makes you question if indeed we know what we are talking about.
We have seen a lot of advancement in the area of not just HIV but also in the area of human rights issues, but we have seen a lot of setbacks as well and in most cases, both are based on populism. Today we are dealing with a setback in HIV funding focusing on prevention. We are seeing a United States government rolling back policies that have been at the forefront of challenging the spread of the epidemic. We are having conversations around criminalisation and what that means for discrimination and disclosure.
In Africa, there are increasing debates around criminalisation of the key population, instead of putting laws in place to recognise and protect them. These narratives are in no way helpful. I remember getting into activism as a very young 23-year old mainly because my friends were dying in the 90s. I got diagnosed at the age of 29 and today, I am on social media and I get emails from young people across Africa talking about their diagnosis and the shame and the stigma and it just feels like nothing has changed.
The Bisi Alimi Foundation did a study on the impact of Homo/Bi/Transphobia on LGBT people in Nigeria. What we found is that increasingly, healthcare professionals are moralising HIV care and support and in the process they are denying those with non-traditional sexual relationships the support they need.
Many people are casting a cloud of anger on the role that ACTUP and other similar organisations played in the 80s and 90s. And going back to what I said earlier, this is compounded by politics that have no principles and are instead based on where the wind blows. The importance of life has eloped from our politics and what is now important is votes and egos.
What do you see as the key challenges for HIV/AIDS advocacy over the next few years, both in the UK and internationally?
Funding. I think we are doing pretty well in the area of biomedicine and the results are showing us what is possible, but my fear is that there will be no more money to make a lot of what we know works. A lot of HIV activists in Africa for example are doing the job on a volunteer basis and this is not sustainable, it’s creating a new wave of activist poverty. We cannot make people do honourable jobs on peanuts and expect them to feed on the good moral the job gives; this is criminal.
Aging is going to be another key challenge but not so much in settings where there is economic independence. This will be a great problem in settings where there are great family bonds but limited economic power. People are getting older with HIV thanks to bio-medical advancement, but at the same time, people will need care, and in settings where the infection rate is still high and where access is still low, it means people are still dying and the reality will be that older people with co-morbidity will find it hard to find support they need. This complication in low and middle income countries will challenge what we know about HIV care when we are confronted with the aging populations living with HIV and other diseases.
Finally, there is the impact of criminalisation that is rooted in shame and stigma. If we do not develop enough strategies to challenge and tackle this, like I said before, we will see all our work going down the drain.
Do you have any recommendations for students wishing to get involved in advocacy who don’t know where to start?
You have to know that behind every piece of data, every statistic, every piece of information and every notebook is a real human being; understanding this is one of the ways you can stand out. Don’t see your work as helping, but as supporting. Also learning is part of growing. Many people feel that formal education is the answer to everything. There are more things you can learn from the woman in the middle of nowhere in Uganda than you can learn from the best book ever written about the plight of that woman by the bestselling author. You have to approach the process as a learning process. There is more to education beyond the classroom.