From Silence to Strength: Why Women Living with HIV Must Lead the Response

I live in Lilongwe, Malawi, and I live with HIV. But my story – like so many women – didn’t start with empowerment. It started with silence, stigma, and injustice.

When I gave birth to my second child, I was forcibly sterilized. Because I was HIV positive, I wasn’t informed, and I wasn’t asked. That moment changed everything for me. I realized I had to act – not just for myself, but for every other woman who could face the same violation. That’s how my activism began.

Charity Mkona speaking at a conference in Malawi.

In my community – and many others – women and girls living with or at risk of HIV face challenges that go far beyond just medicine. Stigma and discrimination are real. They bring fear and keep us far from testing or treatment. Gender-based violence also increases our vulnerability, alongside a lack of female-friendly healthcare, limited access to information, and power imbalances that prevent us from negotiating safer sex or insisting on condom use.

Many young women and marginalized groups don’t have access to culturally sensitive sex education, and fear of judgment can push them away from life-saving services. It all adds up to isolation, keeping many of us on the margins.

That’s why advocacy matters. No one should live in fear or shame. Advocacy helps us educate, shift perceptions, and challenge harmful norms. It also helps us hold institutions to account. I’m proud to be part of the People Living with HIV Stigma Index, gathering real-world data to show that we can’t end AIDS without ending stigma.

As a Unitaid Community Delegation member, I bring my lived experience as a woman living with HIV directly into decision-making spaces. I speak for those who are often unheard, representing my community in front of donors, researchers, and policymakers to ensure their strategies reflect the real barriers we face. I help carry truths from villages, clinics, and streets to the tables where funding priorities are decided, while linking communities to new tools and advocacy training.

Looking ahead, I want our delegation to grow into an even stronger network—working hand in hand with women-led groups, mentoring new advocates, and building strong regional hubs.

Too often, health policies affecting women are written without women. The result is gaps in care, unsafe services, and assumptions that don’t match reality. Leaving women out doesn’t just harm women—it harms everyone.

Women must be involved from the start: in research design, funding decisions, and policy development. Meaningful participation means real leadership—women-led groups that are trusted, funded, and included at every stage of the HIV response.

We must also remove barriers that keep us out. Sometimes it’s bureaucracy—complex paperwork and processes that shut out small community groups. These obstacles are fixable, and we must fix them.

There is progress. Innovations like long-acting PrEP and injectable options designed with women in mind offer new hope, especially for women who can’t attend clinics regularly or face stigma there. But these tools will only succeed if delivery strategies are shaped by women, and if products are affordable and accessible.

Community-led initiatives also give me hope. They reduce stigma, build trust, and create change. Advocacy can be dangerous in countries where certain identities are criminalized, but we continue because exclusion costs lives. No law should ever justify leaving someone behind.

Gender gaps remain, and we are watching closely. When organizations sideline women’s issues, we speak up. We don’t wait for invitations.

Funding cuts are a serious threat and risk undoing years of progress. Donors must prioritize funding women-led, grassroots organizations where impact is strongest. They must create safe spaces for women to lead, support practical prevention tools, and ensure no one is excluded—especially those living under repressive laws.

Above all, they must respect our non-negotiables.

Women and girls living with HIV are champions—not victims. We know what works. We are leading, advocating, innovating, and holding the line. We are already at the table, but the world must listen and invest in the solutions we demand.

Ending AIDS by 2030 depends on it.

Information is power. Every time we speak out, another woman finds her voice—just as I did.