By: Michelle Anderson, MA, Grassroots Advocacy & Patient Storytelling Consultant, ADAP Advocacy
**First-Person Perspectives**
I have been in advocacy for more than 20 years, and for years, I have sat in rooms where decisions were being made for people like me without including people like me in the conversation. I have listened to presentations filled with statistics, charts, and research findings that spoke completely over my head. I have listened to reports that described the disparities affecting Black women living with HIV, but those reports were not always an accurate depiction because they did not provide a complete narrative of Black women's experiences when faced with the systemic pressures that create risk for HIV beyond behavior. Although the data is important and research matters, something is still missing.
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| Photo Source: Narrative Power Institute |
I often say that stories are more than personal experiences. They are a form of knowledge that speaks beyond what data cannot convey. They help us understand how policies, systems, and institutions impact real lives. They reveal the human reality behind data and create opportunities for change that numbers alone often cannot achieve because they connect the numbers to human impact.
For instance, when a Black woman living with HIV shares her experiences, it brings context to the conversation. It helps people understand that HIV is not a single issue. It is often connected to issues like poverty, trauma, housing insecurity, gender-based violence, lack of healthcare access, and systemic racism. These are realities that cannot be fully captured in a report because statistics only tell the story of the disproportionate impact of HIV.
Storytelling makes systems visible. It helps us move away from stigmatizing rhetoric that blames individuals and toward examining the conditions that shape people's realities. Instead of asking why someone did not make a different choice, storytelling helps us understand why the decision was made, given the options available to them and the conditions that shaped those options.
I have seen firsthand how stories can change a room. I have watched policymakers lean in when they hear someone describe the choice between paying rent and paying for healthcare. I have seen healthcare providers reconsider their assumptions after listening to a patient who may have fallen out of care due to transportation barriers. I have watched community members connect with issues they previously viewed as distant or unrelated to their own lived experiences. Stories create understanding, empathy, accountability, and, most importantly, they create movement.
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| Photo Source: ADAP Advocacy |
That same principle is at the heart of the work currently underway through the "ADAP Saves Lives: End the Wait" campaign, which was launched in response to the reemergence of ADAP waiting lists and restrictions in some parts of the country. For those of us who have been in this fight nearly 20 years ago, the thought of people once again waiting for access to life-saving HIV medication is deeply concerning. Storytelling is an essential advocacy tool because behind every policy decision is a person whose health may be affected. By elevating the voices of persons living with HIV, storytelling helps policymakers and communities understand what is truly at stake when access to care is threatened.
Meaningful Involvement of People Living with HIV/AIDS (MIPA) recognizes that people living with HIV should be involved, utilizing our lived expertise as leaders, decision makers, and partners in shaping the policies and programs that impact our lives. When people share their experiences in legislative hearings, advisory boards, advocacy campaigns, and community discussions, they provide evidence-informed solutions grounded in real-time experiences. This is when narrative begins to build power.
Narrative power is the ability to shape how people understand an issue. It is the ability to influence systems by challenging stigma, exposing data gaps, and moving conversations beyond awareness to impact. By shifting the narrative, our stories change perspectives, influence policy, and become the power that shapes how systems operate and whose voices are valued within them.
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| Photo Source: ADAP Advocacy |
I believe that the people closest to the issues are often closest to the solutions. Lived experiences belong at decision-making tables because stories are more than personal testimonies. They are tools for leadership, advocacy, and systems change. Stories do change hearts, but they also change how people understand issues, how policies are shaped, and how systems respond to the communities they serve.
Stories do change hearts, but the power does not stop there. They help people understand, in real time, the realities behind data and the impact systems have on people’s lives. When we share our stories, we are challenging stigma, educating communities, informing policy, and creating opportunities for change. We move beyond awareness and into action. We transform our lived experiences into narrative power. This month marks the beginning of ADAP Advocacy’s narrative power to combat the resurgence of those dreading AIDS Drug Assistance Program waiting lists. Patient’s lives depend on it!
Disclaimer: All funders of the ADAP Advocacy Association are publicly listed on our website.
Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association; rather, they provide a neutral platform for the author to promote open, honest discussion of public health-related issues and updates.
