african hiv community – HIV stigmafighter

My lovely people, how have you been? These days it feels very fashionable to talk about equality in HIV action in many parts of the world, including the Netherland. Lately I have been wondering if people, especially our HIV allies, understand what equality means to people living with HIV with a migrant background.

For me, equality is about the state of all people living with HIV being equal in status, representation, rights, and opportunities to prioritise, co-design and act upon addressing HIV-related issues. While we have made great strides towards empowering people living with HIV (PLWHIV) in places such as the Netherlands, PLWHIV with a migrant background continue to be hardly seen or heard. Let me take some time to explain why I believe there is no equality in HIV action yet in the Netherlands and what we can do to change this.

Every year around this time, statistics about HIV in the Netherlands are published in quite an excellent report. Already for years it is confirmed that about 42% of PLWHIV in the Netherlands have a migrant background. PLWHIV with an African background make up about 8% of the total.

I am not a data scientist, but these numbers tell me that there are over 8,300 PLWHIV with a migrant background in the Netherlands of which at least 1500 (!) people are from my beloved continent Africa. These numbers highlight the significant impact of HIV on migrant communities in the Netherlands and underscore the need for targeted and culturally appropriate support for us, PLWHIV with a migrant background.

So, now let me move on to what is being done by and for them here in the Netherlands. Considering we are well represented in the statistics over the past many years and to stay on topic, namely equality in HIV action, you would expect we deserve quite some attention from our HIV allies in the Netherlands HIV community, right?

So far I have observed that, despite some efforts made to reach out to PLWHIV with a migrant background, we remain largely unheard in the Netherlands HIV community. In fact, this was recently acknowledged by the Netherlands HIV association, one of the ‘big five’ organisations in the National HIV alliance, who stated that one of their aims for 2025 is to improve their engagement with people they haven’t engaged with sufficiently, including people living with a migrant background.

Yes, our faces and stories are always there in the glossy magazines made by some of the big five, we are always mobilised to appear on stage at big HIV-related events, and we are pampered at nice retreats organised for us. But in the end what matters is how many of us are holding positions of power in these organisations. After all they are the recepients of considerable funding from sister NGOs, government institutions, private donors and big Pharma. And unfortunately, money translates into power and responsibility.

So, I challenge the big five and others, how many of us are empowered to push the priorities of PLWHIV with a migrant background into strategies and workplans, decide upon the means needed to take culturally appropriate HIV action, and work with us on migrant-lead HIV actions? Are we equally represented in the operational centers and boardrooms of the big five? From what I can see it is not even close to 42%…

May this be driven by stereotyping of people with a migrant background, including belief that we are not capable to actively co-lead change in the Netherlands HIV community? Sure, some of us take part in these organisations and manage to influence the agenda for PLWHIV with a migrant background in the Netherlands. Yet, if we represent 42% of the total population living with HIV in the Netherlands, then don’t we deserve a bigger say about what should happen in our Netherlands HIV community?

I firmly believe we deserve more equality. To eliminate this, let us instill a “Change we can believe in” attitude such during the Obama campaigning days in 2008. And let us draw inspiration from an organisations such as the Africa Advocacy Foundation (AAF) playing such an inspiring role in the UK HIV community. They are a community-led initiative aiming to equip diaspora communities and marginalised people with the tools they need to find better health, safety, prosperity and opportunity to lead fulfilling and happy lives.

I am very inspired by an AAF initiative called Community Axis for Sexual Health. “CASH aims to engage Black communities in HIV awareness, prevention, testing and treatment. Management of HIV risk is not restricted to PLWHIV and includes those who are HIV negative but identified as being at higher risk of exposure to HIV. More broadly, the aim of the service is to tackle the stigma surrounding HIV and the barriers to engaging with HIV testing, treatment and prevention services experienced by Black communities”.

Comparing to AAF’s CASH programme, we are lagging far behind in the Netherlands. I admire how outspoken AAF is about the huge need to reach PLWHIV with a migrant background and how they take action by designing migrant-centered services that are culturally appropriate whilst making sure these are delivered by people with a migrant background.

I applaud their courage to stand up for the needs of PLWHIV with a migrant background and my dream is that one day we will be at a point in the Netherlands where we also have a Movement led by people with a migrant background that represents both the needs of our 42% of the HIV community as well as for people with a migrant background that are HIV negative.

In the beginning I mentioned the importance of ensuring equality across the Netherlands HIV landscape. We need change in so many ways: In the way the big five organise themselves to ensure people with a migrant background are better represented, the way PLWHIV with a migrant background are given opportunities to lead HIV action, and the way healthcare providers deliver culturally appropriate services for PLWHIV with a migrant background.

These changes can only come if people who are currently dominating our HIV community see us as equals, if they listen to our needs and wants, if they share power and resources with us, and if they provide more space in the HIV community for us. If we keep being seen as recipients of aid instead of equals in our fight against HIV, then some battles against HIV may be won but we shall never be victorious!

We have been ready for a long time, are you ready to join us?

Peace, Eliane

P.S. do you recognise these faces from the Netherlands HIV community? They have all appeared in over a decade of glossy magazines on HIV, so I made a collage of them as a reminder of our precious community. Some of them are not with us any more in our fight against HIV, let us remember them for always. Now let’s bring equality for PLWHIV with a migrant background!

As many of you know, I always like to show my passion of fighting HIV stigma through many different talents. On the 13^th of september it was time for me to express myself as a HIV artivist as I was invited to join a very special celebration of ‘Projekt Afrikaherz’ based in Berlin, Germany.

Already for 25 (!) years Afrikaherz (‘African Heart’) is fighting to improve access to health services for African migrants, with a focus on HIV/AIDS as overall there is limited access to health care, especially for migrants without formal residence status.

I was excited to meet other people from the African community living in vibrant Berlin and to share my passion for African music making, playing my indonongo instrument, singing and dancing with them. Helping to make sure they have an unforgettable experience so they can recharge in their fight against HIV stigma in their local HIV communities.

There were so many HIV-related issues to cover during this marvelous event. History has shown that when we are fighting for our right, we should not give up so easily, no matter how hard things are. I learned that especially in the beginning Afrikaherz went through a hard time with a lot of rejections and disinterest by the health system in Berlin. However, they persevered and through their hard work and insistence, gradually they were able to create a solid name in health & HIV response, also making sure to address the stigma surrounding those living with or affected by HIV and AIDS.

Listening to testimonies of fellow members of the African community in Europe, I realised that eventually they managed to navigate their journey through the German HIV and healthcare system, even if it took them 25 years to make that journey easier for people with an African background in Berlin. They did not give up! This is a truly great achievement worthy of celebration.

After these speeches I was invited to share my personal experience of living 21 years with HIV. I call this urugendo which means life journey. Those of you that know me longer may have already seen me perform urugendo, it is a fun way for me to share my ups and downs and highlight the work I am doing to improve access to health & HIV care and fighting HIV stigma. By the way, if you don’t know urugendo, contact me, I am happy to perform it for you one day 🙂

Immediately after my performance I joined the stage for a panel discussion with fellow HIV activist from Germany Lilian Petry from Deutsche Aidshilfe, Elizabeth Beloe from Federal Association of Migrant Organizations and Susanna Kahlefeld from the Green Party. For me a question that intrigued me was the one about the future of Afrikaherz in 10 years from now. My wish for them is to be able to connect even more with other local HIV organisations and health services in other states in Germany, and even reaching out to organisations in surrounding countries such as those in the Netherlands. Because we all know that the African migrant community is very well connected throughout the whole of Europe and the rest of the World. Organisations such as Afrikaherz are essential to bring positive messages to the African community about access to health & HIV care and fighting HIV stigma. And their message will be so much more powerful if it is amplified to people with a migrant background in the other 15 states of Germany, the Netherlands and other countries. Connected we are stronger!

During the course of the event I realised that there is something we still lack a lot both in Germany and the Netherlands and we must address urgently; When we talk about HIV prevention, PrEP awareness and access must also be actively promoted in migrant communities! While here in the Netherlands great work is done by organisations such as PrEPnu, with a particular focus on Men who have Sex with Men (MSM), and while Afrikaherz does promote the use of condoms, African migrant communities are still left behind when it comes to PrEP. The harsh reality is that there are way too few organisations in our HIV community that are actively promoting PrEP access. So, how can African migrant communities know about PrEP? I cannot repeat often enough how important it is that we take more co-ordinated action to ensure PrEP access for key and high-priority populations.

We will not end HIV and AIDS when we continue ignoring African migrant populations in countries such as the Netherlands and Germany. They have equal rights to good healthcare and HIV prevention services while tailored to their specific needs. Please learn from the example that Rosaline M’Bayo and Stephen Amoa from Afrikaherz are setting and make sure they receive the support needed to do their health & HIV outreach for the African migrant community in Germany!

Back to sharing urugendo and some tunes on my indonongo, I got a lot of positive compliments. People told me that my HIV journey and music inspired them, and that I am a powerwoman. Who doesn’t like receiving such beautiful compliments at times? For me the biggest reward was to connect with people from the migrant community and their HIV allies. I am so proud to listen to their inspiring stories to fight HIV stigma.

Through every connection we realise and cherish, we will make our HIV community stronger. Together we will win our fight against HIV and AIDS!

Peace,

Eliane