Warren O, a person living with HIV for 11 years who has first-hand experience with HIV stigma, discusses his perspective on how the reduction of stigma could help to end the HIV epidemic.
For this HIV Long-Term Survivors Awareness Day on June 5, Pharmacy Times interviewed Warren O, a person living with HIV for 11 years who has first-hand experience with HIV stigma, on his perspective on how the reduction of stigma could help to end the HIV epidemic.
Skylar Kenney: Warren, how has living with HIV over the past 11 years impacted your life?
Warren O: Well, it really has influenced the body of work that I was born to do, if you will. It's really kind of a spiritual journey for me.
When I started in ministry back in 2004, in the traditional sense, I never felt the level of comfort that most preachers would in the pulpit. But I knew that there was something spiritually connected to it because at diagnosis on November 2nd, I was told I would only live for 8 days, and I knew that that was not the end of my journey—it was only the beginning of a new journey for me that I could see when others wouldn't around me at the time.
So, it has been uniquely interesting to be able to know that this was what I was supposed to be doing for the world, and to be able to see it unfold over the last 11 years has been a very rewarding, and at times interesting, experience in that it's nerve-wracking to see things come to light after I've laid in a bed supposedly taking my last breaths from this disease.
Skylar Kenney: How would you say that the stigma towards the HIV epidemic has impacted your life?
Warren O: Because I knew I was born for this, not so much. I come from a rural community in the southern part of the United States, and so when you talk about stigma, I've faced it from just about every aspect of my entire existence, so this was not really much different, but having to navigate it among my own culture has been uniquely interesting, because as a Black, openly bisexual male of faith, that's not the normal conversation that we have.
So, because my identity didn't align with the traditional heterosexual normative conversation, it's been unique in that I've had to open some eyes and enlighten some people about the humanity of HIV over the actual diagnosis of HIV, and as such, we've been able to make some inroads in the faith community and in the greater community for it for a rural town that I'm from.
Skylar Kenney: Do you feel like the stigma you have experienced is primarily based in misplaced fear or is there something else, in your view, that has caused this to endure over the years?
Warren O: I think a lot of it is misplaced, but more than not, it’s lack of education and awareness about exactly what the disease state is.
Many people in my community, when you ask them what is HIV, they can't tell you what the medical term is, they only know the stigma connotations that they've seen from media and/or from what they have heard from family about what the deadly disease, in quotes, really is.
When people come to understand that it's a chronic disease that's manageable like many others, like hypertension, cholesterol, and others, they tend to then get a greater understanding that it's really not the devil that it's been made out to be, and particularly because of the advancement in treatment that exists now. Some of the celebrity faces and names that have been attached to the disease state has reduced some of that fear and anxiety that people have as well.
Skylar Kenney: I feel like we've already touched on this a little bit, but I'd still like to ask: Has that stigma that you've faced, has it been diminishing over time?
Warren O: I would say yes. One, because when I was diagnosed with HIV, I didn't hide it, I took the bull by the horn and I felt like the power was within me to change minds. So, when I was diagnosed, I became very transparent about my diagnosis from the start. I normalized it for myself; therefore, no one else had the power to change what my narrative was.
When I ran for public office several years after my initial diagnosis, I ran as an openly bisexual HIV-positive Black male because I want people to know the whole of who I am and not just a piece of who I am, and nor did I want to give them the ability to use it as a weapon, though they tried and were successful in the sense that because it's a small community, people were afraid of whether I would be able to last the tenure, if you will.
The result was not what it was expected to be from me; however, seeing the culture and how politics has run since then, I've been a pivotal change agent, if you will, in how people approach their campaigning and their engagement with community members, in general, as a result of the way that I approached it. So, I feel like I still won, I just didn't necessarily win the seat, if you will.
Skylar Kenney: How could reducing the stigma against HIV further help to end the HIV epidemic?
Warren O: I think it ends the epidemic because we embrace things that we're not afraid of, and when we remove fear of HIV away from people and normalize treatment as prevention, then I think only then can we get to people testing routinely like they should, people staying in a care like they should, and people actually opening up the conversation about what it's like to live with HIV.
It's part of why I use my name and my face to let people see that just like they are living every day, I too can. It's just that I have one more step in my day that I have to take to make sure that I continue doing that, and so, because of that, it's become my purpose every single day to normalize the living with the disease that's chronic, but then people are shocked when I tell them how long I've been living because I don't look like what I did the day that I was diagnosed anymore.
Skylar Kenney: What would you as a patient living with HIV like to see happen in the future to improve your quality of life in society and within the health care system?
Warren O: Seeing more providers who look like me would be the first thing I would say. Oftentimes, because I come from the South, where we, in particular in Alabama, have had a cultural history of medical mistrust with White providers based on the Tuskegee syphilis study.
I would say that reimagining health care, for me, is in is recruiting a pipeline of health care providers who look like the communities that they serve, particularly in the areas where they serve. Not to say that we don't have medical providers of color in Alabama, because we do, but they're far few and between and no one can really dictate what my lived experience is if they've not lived it.
So, I think having the ability to walk into a pharmacy office just to go into account, mental health therapist office, going into a medical establishment and seeing myself more routinely more regularly represented physically and on the walls would make a difference in how people are accessing here in the future.
Skylar Kenney: As a long-term survivor of HIV, what would you like our audience of pharmacists to understand about your experience living with HIV and pharmacists’ ability to support you and other patients like you?
Warren O: I think normalizing us picking up drugs at the pharmacy like any other patient that comes in to get any other drug is something that's important. The whispers that I've experienced from pharmacists for consultation around new medication and how medications should be taken doesn't normalize that experience for us.
Equally, pharmacists not necessarily having conversations in open spaces about our treatment because it then raises questions for people who've not ever heard the names of the drugs before. So, I think one of the things I would say is being able to have consultations in spaces that are closed for HIPAA reasons is important, but also having relationships with our pharmacist as a client living with HIV who takes the treatment making it a friendly relationship and not one medicine to client relationship is important as well.
Skylar Kenney: Warren, thank you so much for taking the time to speak with me today.
Warren O: Thank you for having me, and I'm excited about the opportunity to be able to share with your audience my perspective, my lived experience, and my hope, because we know that for every opportunity that we get to share this message, we're making a difference for tomorrow's world today.
So, Skylar, I appreciate you and Pharmacy Times for having me to be able to share my story.