This world AIDS day, funders must stand with Black women

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By Crystal Winston/Alliance

There have been more than 40 elections around the world this year, ushering in new leadership with varying perspectives on the fight against HIV. During this uncertain time, so much feels out of our control. But, World AIDS Day 2024 offers an opportunity for HIV advocates and funders to look inward. What can we, in our own capacity, control? How might we shift our priorities to best support the populations we serve in the face of an uncertain future?

My belief is that progress starts with community, particularly those most impacted by HIV.  Funders Concerned About AIDS’ (FCAA) most recent data spotlight further that HIV philanthropic funding amounted to roughly $2.70/year per woman living with HIV in 2022—despite women and girls accounting for 53% of people living with HIV. Without adequate funding to counter the systemic barriers women and girls face in accessing HIV prevention and treatment, we will not succeed in ending this epidemic.

That’s why I encourage HIV advocates and funders to focus their support on the communities most impacted by the virus. There are already so many efforts to support community-led initiatives to which we can look for inspiration; their impacts demonstrate the power of funding such projects.

As an example, I’ll point to the ViiV Healthcare-funded program, Risk to Reasons.

In 2021, ViiV Healthcare sought a deeper understanding of the circumstances impacting Black women’s access to HIV prevention and care, leading it to convene the Black Women’s Working Group to Reframe Risk, consisting of 12 Black women living with and working in HIV. The working group collaborated closely with ViiV to co-create the Risk to Reasons initiative, which sets out to ‘develop new messages, new messengers, and new methods to increase awareness and action around HIV prevention and care to Black women of cis and trans experience.’^[1]

Since launching, Risk to Reasons has reached over 40,000 women with messaging that has proven more effective than the outdated HIV awareness lexicon focused on ‘risk’ and ‘risky behaviors’—language that many women felt was counterproductive and off-putting. Today, the initiative creates content, funds community action, and connects advocates across the country to link more Black women to prevention and care.

To fully grasp the value of funding programs like Risk to Reasons, we must acknowledge the intersectional nature of HIV as well as the need to address underlying issues created by the continued stigmatization, especially among historically minoritized populations.

HIV is an inherently feminist issue

In 2023, nearly 1.9 million adolescent girls and young women globally were living with HIV, compared to 1.2 million adolescent boys and young men^[2]. The impact is even greater for Black women, particularly those experiencing poverty.

In the United States, factors such as institutional racism, stigma, and poverty put Black and trans women at greater risk of acquiring HIV. The rate of new HIV diagnoses among Black women is 10 times higher than among white women, while FCAA’s December 2024 data spotlight reveals that the rate among transgender women is 20 times higher than among other adults aged 15-49 years.

Myriad reasons lie behind this imbalance, including the struggle for women to take full autonomy over their own bodies and sexual health. Globally, only 55% of partnered women make their own decisions about sex, contraceptive use, and health care. This lack of agency makes it much more difficult for women to negotiate safe sex or access preventive measures like condoms, putting them at higher risk of HIV transmission.

Access to care, or lack thereof, raises additional concerns. Restrictions on abortion, which are growing in the U.S. and around the world, have resulted in the closure of many reproductive health clinics. This further limits access to sexual and reproductive healthcare, including HIV testing and pre-exposure prophylaxis (PrEP). Game-changing innovations—like the recently developed twice-yearly injection of PrEP, which is 100% effective at preventing HIV among women—cannot effectively end the epidemic if those who need it most are unable to get it.

Efforts to center women in the fight against HIV, including initiatives such as Risk to Reasons, empowers Black women to take control of their sexual and reproductive health. Risk to Reasons invites women to explore their individual needs, desires, and pleasure. It frames these topics as reasons to support their health, not as factors that put them at risk. It encourages women to ask for what they want and need and increases autonomy while breaking down barriers to prevention.

De-stigmatizing Black sexuality in conversations about HIV

Years of experience have taught HIV advocates that they can’t deliver an effective response without meeting the underlying needs of women and girls. That’s why programs developed by Black women for Black women are so impactful—they meet community members where they are and acknowledge the barriers to effective prevention.

My fellow Risk to Reasons implementer, Daniella Thorne of Advocates for Youth, recently shared why she believes the program is so impactful for her community, explaining that the initiative, ‘encourages folks to think about the reasons why Black women experience higher rates of HIV incidence and prevalence, as well as their barriers to treatment and prevention. Unlike other initiatives, it encourages the unlearning of stigma, often perpetuated in our communities, and explores innovative ways to raise awareness.’

I’ve witnessed the same impacts firsthand. Black women are too often over-sexualized in our society, which becomes internalized as shame about our own sexuality and desires. In my Risk to Reasons workshops, I’ve seen de-stigmatization in action. I’ve watched as women, especially those from older generations, talk openly about sex—perhaps for the first time. I’ve listened to younger women speak about the topic more openly, which is encouraging. Over the course of the workshops, all of the women become more comfortable and open to asking for, and talking about, what they need, including prevention measures. This de-stigmatization has an impact on HIV prevention that is impossible to quantify.

‘Effective funding must go beyond just providing treatment—it needs to address the root causes of these disparities, including racial and gender-based discrimination, social marginalization, and a lack of trust in healthcare systems.’ – Daniella Thorne

One of the workshop participants, a 22-year-old woman named Destiny, shared with me that it was very powerful to see her fellow participants so involved and invested in these conversations. Destiny went on to explain that Risk to Reasons directly impacted the way she monitors her own health. She told me, ‘I’m more aware when I’m at my doctor appointment. I ask more questions,… [I’m] more aware of my health, and also I can spread the awareness to other girls.’ Destiny also agreed that she considers HIV a feminist issue, especially for Black women, due to ‘limited information and resources about sexual health’ that leads to higher rates of infection.

With 4,000 women and adolescent girls still contracting HIV every week, we cannot afford to wait. This World AIDS Day, I encourage funders and advocates to listen, learn, and act swiftly to identify and fund the programs that center Black perspectives.

The health and futures of millions of women depend on it.

Elections, Leadership, Advocacy, Funders, Uncertainty, Control, Shifting Priorities, Support, HIV, World AIDS Day 2024.

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