Maverick Citizen

Maverick Citizen OP-ED

For us, by us: Putting communities at the heart our fight against HIV 

In addition to Covid-19, violence and conflicts are also exacerbating the HIV crisis in Africa. (Photo: Adobestock)

Four decades into the fight against HIV, it is time to renew the urgency of ending HIV. Only innovative leadership and putting communities first will get us there. 

Sbongile Nkosi and Gerard van Mourik are the Co-Executive Directors of the Global Network of People Living with HIV.

The impact of Covid-19 and how it curtails our global fight to end HIV is undeniable and cannot be ignored. Nonetheless, the gains of the past forty years are worth celebrating: from the continuous improvement of antiretroviral drugs including the development and distribution of Pre-exposure prophylaxis (PrEP) to achieving the status of undetectable and untransmittable where people living with HIV adhere to their treatment until the virus is undetectable in their blood, thus untransmittable. 

And from the beginning, as HIV began to gain global attention, the Global Network of People Living with HIV (GNP+) grew to become the first community-led initiative on a global scale to advocate for and fund access to HIV prevention & treatment. While HIV communities continue to provide services, advocacy, and legal support for HIV programmes across the globe, they struggle with funding and capacity and resources — particularly in the Global South. 

To become leaders of this global organisation during this time is daunting, but now more than ever before, when a new pandemic threatens decades of difficult progress, the organisation’s track record makes GNP+ a key partner to maintain the gains into a new decade. The HIV global community faces a real threat during the rise of a new emergency — Covid-19 — which brings with it its own set of inequalities, such as access to vaccines, increasing economic insecurity and increased risks for people living with HIV, especially those with low-income where vaccine access is extremely limited. As of 2 July, 16 million Africans — less than 2% of the continent’s population — are fully vaccinated, leaving even more millions of African people still vulnerable on a continent that accounts for two-thirds of the world’s HIV population. 

A survey conducted by GNP+ and its partner organisations found that despite the challenges presented by the pandemic, networks of people living with HIV have been using innovative ways to ensure their peers and communities continue to have access to the critical services including HIV testing, treatment and routine viral load testing. Close to 60 coalitions and organisations of people living with HIV from 37 countries swiftly adapted support systems and skills to lead the response to Covid-19 in our communities and countries. But we cannot do this without political and financial support from governments, donors, and UN agencies. And even as we rise to the additional challenges of Covid-19 and contribute to the response, the world must not abandon us people living with HIV. 

Just as HIV took the focus off other communicable and non-communicable diseases from the 1980s onwards, the Covid-19 pandemic has drawn scarce advocacy and resources away from HIV prevention and control. 

While this is true, the pandemic has also unmasked the persistent inequalities that stand in the way of global progress.

There are many parts of the HIV community, not only in parts of Africa and Asia but also among poorer, isolated communities within Europe and the Americas, such as refugees, immigrants and homeless people, where these global goals are far from being met and the reasons for this have nothing to do with the pandemic. 

Stigma and discrimination against people living with HIV continue to harm their mental health and create barriers to treatment. Additionally, these negative effects are compounded by their intersecting identities such as gender or sexuality. This is why GNP+ and its partners developed the HIV Stigma Index, a standardised tool to gather evidence on how stigma and discrimination impact the lives of people living with HIV. For instance, in Jamaica, more than a third of about 600 surveyed Jamaicans living with HIV reported experiencing at least one form of HIV stigma or discrimination in the past year. Additionally, members of key populations such as men who have sex with men (MSM), sex workers and transgender people bear the brunt even more.

Meanwhile, violence and conflicts are also exacerbating the HIV crisis. The ongoing violence in Myanmar also threatens access to health services for people living with HIV. Additionally, people who inject drugs are most affected by HIV in Myanmar. 

All of this is happening at a time when the battle against HIV has not yet been won in a uniform way.

In a world of HIV advocacy filled with donors, stakeholders and governments, all with different strengths, GNP+ prides itself in being deeply rooted in the primary community at the heart of all this action. As the world’s largest network of and for people living with HIV, run by people living with HIV, we can truly say that we are leading by personal example, priority and local experiences of our own affected communities — locally, nationally, regionally and globally. 

The historical step to appoint two co-directors, one based in the Netherlands and the other in South Africa, re-emphasised the organisation’s commitment to community-based solutions — directly from the communities that are affected. Our key spaces of interaction are the affected communities of people living with HIV across the Global North and South. Our leadership is a commitment to bridging the global divide and uses scarce assets in a collaborative way. 

With new and emerging information about the challenge posed to HIV advocacy and funding by the Covid-19 pandemic, made worse by the inequality that already exists in access to prevention, treatment and care, GNP+ will use its 35-year-old history to continue the fight. 

We will win this battle together. With us, for us and by us. DM/MC

Sbongile Nkosi and Gerard van Mourik are the Co-Executive Directors of the Global Network of People Living with HIV.


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