Thriving Grandmother Movements Are a Feminist Issue

As the International AIDS Conference in Rio de Janeiro comes to a close, reflections on community leadership, aging bodies, and the dangerous myth that 'the AIDS crisis is over.'

As the global health community returns home from Rio de Janeiro following the conclusion of the International AIDS Conference, I find myself reflecting deeply on a fundamental truth: our greatest strides over the decades have always been driven by the fierce, unflinching power of grassroots organizing.

The insights I share today are personal musings, borne out of the profound honor of holding space recently for a group of truly phenomenal global advocates whose voices continue to resonate in my heart and mind. Moderating the Stephen Lewis Foundation's webinar, Twenty Years Strong: Grandmothers' Leadership in the HIV Response, felt like witnessing history in action. It reconnected us to a bond forged twenty years ago at a historic global gathering in Toronto—yet the realities on the ground today demand an entirely updated, deeply caring plan of action to sustain this fight.

Speakers from Canada, Uganda, South Africa, and Zimbabwe presented the raw, unfiltered reality of holding entire communities together. When the HIV pandemic claimed a generation of parents, these grandmothers stepped in without a second thought. Today, in contexts where state pensions either do not exist, remain out of reach due to strict age or formal employment criteria, or offer amounts too low to sustain a household, these grandmother movements and networks remain the primary safety net keeping families from total destitution.

Grandmother networks are the quiet architects of survival, gently navigating regressive cultural and religious contexts to protect basic human rights, such as access to education and treatment and care for orphans, and to ensure that the future generations in their care not just survive but also thrive.

But the price they pay is far too high. Today, these grandmothers are forced to absorb heavy, compounding modern crises—from crushing inflation and systemic youth unemployment to rising substance abuse and unplanned pregnancies affecting their children, grandchildren, and great-grandchildren - crises deeply intertwined with gender-based violence (GBV).

Our dialogue laid bare a truth global health movements can no longer ignore: the struggles facing grandmothers and ageing women—whether living with HIV themselves or caring for loved ones—are fundamentally women's rights issues.

We frequently state that women are not a homogenous group, but it is time to operationalise those words. We must listen to their distinct experiences, fund their expertise, and ensure mainstream advocacy agendas integrate their explicit demands.

It is ludicrous to place an extra burden on grandmother networks to do all the heavy lifting for their own issues when this is fundamentally a core women's rights issue. It is time to ensure our advocacy agendas are neither ageist nor exclusionary, leaving those relegated to the margins to bear a disproportionate burden in the fight for their own voice, recognition, and rights.

We must also break the silence around issues routinely pushed into the shadows:

• Menopause and perimenopause care integrated into primary healthcare services,

• Chronic illness management for ageing caregivers and women living with HIV, and

• Self and collective care frameworks that cultivate cultures of care—tending directly to the structural burnout grandmothers face as a result of their roles, their lived experiences, and their ageing bodies.

Healthcare systems and society at large continue to treat grandmothers as unbreakable pillars while ignoring the physical realities of aging, chronic strain, and caregiver burnout. We must shift our movement's culture from expecting endless self-sacrifice to practising true, structural collective care and honouring their bodily autonomy. For this response to be truly transformational, we must acknowledge how little is poured back into the cups of these grandmothers—and commit to restoring them in holistic, context-appropriate ways.

In the wake of the discussions in Brazil, our message remains urgent: we must fiercely reject the dangerous myth that 'the AIDS crisis is over.' While remarkable progress has been made, this false sense of completion is actively driving catastrophic cuts to international aid and threatening the future of the Global Fund. Solidarity cannot be treated as a historical event from 2006; rather, it is an active, ongoing political choice we must make every single day. Now that global attention shifts from conference halls to local implementation, international leaders and donors must step up:

1. Direct Funding: Invest directly in grandmother-led movements and compensate their expertise.

2. Rights Protection: Safeguard their bodily autonomy and human rights in both health policy and practice.

3. Generational Continuity: Intentionally support leadership transitions so the next generation of activists can fearlessly carry the torch.

These grandmothers have spent twenty years refusing to raise their children for the grave. It is well past time for the world to match their resolve with structural support, health justice, and the rest they have so fiercely earned.

A luta continua!