OZIEL MDLETSHE
December is a month of reflection and renewal for those of us affected by and living with HIV. It is an opportunity to recognise the progress made in the fight against HIV and AIDS and to reflect on the pivotal role played by people living with HIV (PLHIV) in shaping the HIV response in South Africa.
Over the decades, our activism, advocacy, and resilience have been at the forefront of driving policy changes, improving treatment access, and fostering community support systems. As we pause to consider our journey, it is equally important to question whether our activism still effectively serves the interests of PLHIV in our communities today.
The journey of HIV activism in South Africa is rooted in courage and unity. In the 1990s, when stigma and discrimination ran rampant, it was PLHIV who broke the silence and made HIV visible by publicly disclosing their status.
These individuals not only normalised conversations about HIV but also inspired hope for those silently battling the disease. The act of disclosure was more than a personal decision, it was a bold statement aimed at confronting stigma, educating the public, and advocating for systemic changes.
One of the most significant achievements led by PLHIV was the fight for access to antiretroviral (ARV) treatment. South Africa’s current ARV rollout program, which is now one of the largest in the world, was born from relentless activism.
Through movements of PLHIV advocated for the government to prioritise HIV treatment in its budget and implement policies that would make lifesaving medications accessible to all. This activism changed the trajectory of the epidemic, saving millions of lives and proving that collective action could hold governments accountable.
Beyond policies and treatment, PLHIV were instrumental in establishing community-based support systems. What began as informal support groups for sharing experiences and coping with the challenges of living with HIV have evolved into adherence clubs embedded within our health facilities.
These clubs play a critical role in ensuring that individuals on treatment stay engaged in care, adhere to their medication, and receive psychosocial support. Once again, this innovation stemmed from the lived experiences of PLHIV, demonstrating how our voices and leadership contribute to effective HIV management.
The slogan "Nothing About Us Without Us" encapsulates the essence of our activism. It emphasises that any policies, programs, or initiatives addressing HIV must include the meaningful involvement of PLHIV at every level.
This principle was solidified through the adoption of the Greater Involvement of People Living with AIDS (GIPA) framework, a global standard aimed at normalising HIV in society while empowering those living with HIV to take an active role in shaping the response. South Africa’s embrace of GIPA highlighted the recognition that PLHIV are not just beneficiaries of HIV programs but are critical partners in designing and implementation.
As we reflect on these milestones, we must also assess the current state of our activism. Are we still representing the interests of the voiceless in our communities? Is our movement as united and impactful as it once was?
These are important questions for us to consider, particularly at a time when complacency can easily set in. While the achievements of the past provide a strong foundation, they should not be the endpoint. The fight against stigma, the need for innovative approaches to HIV prevention, and the push for greater access to services remain pressing issues.
Public disclosure, once a powerful tool for normalizing HIV, must also be revisited. Its purpose was to amplify the voices of the voiceless and to make HIV part of everyday conversations. Today, as the landscape of the epidemic shifts, we must ensure that disclosure and public activism continue to serve their intended purpose and resonate with the younger generation of PLHIV.
This December, let us honour the legacy of those who came before us while recommitting to the ideals that have defined our movement. The journey of PLHIV in South Africa is a testament to the power of unity, resilience, and advocacy. As we move forward, let us continue to ensure that our activism reflects the evolving needs of our communities and that the voices of PLHIV remain central to the HIV response at every level.
Together, we can keep the spirit of our activism alive and build a future where the rights, dignity, and health of all PLHIV are fully realised.
Oziel Mdletshe is an HIV and Human Rights activist.
Daily News