For National HIV Long-Term Survivors Awareness Day, HRC spoke with Octavia Y. Lewis, transgender health coordinator for Montefiore Health Systems, and Tony Christon-Walker, director of prevention and community partnerships for AIDS Alabama, to discuss their journeys with HIV and how the COVID-19 pandemic has affected people living with HIV.

Here is what they had to say:

Octavia Y. Lewis, MPA
Transgender Health Coordinator
Montefiore Health Systems
Pronouns: She/Her

What does it mean to you to be a long-term HIV survivor?
Being a long-term HIV survivor means living a life that is full of all the emotions that life has to offer. As a mother, it means watching my son grow up to become the individual of his choice. I have witnessed friends who were not HIV-positive die and it has given me a different perspective of assessing my own immortality. I want to continue to live my authentic truth as a Black woman of transgender experience who is not only living with HIV, but is thriving. I also want the world to know that I'm more than my diagnosis or some health care statistic — that my life matters and there are people who love me as well. I will continue to be an activist and advocate for the transgender community and those living with HIV because intersectionality matters.

What would you say to someone newly diagnosed with HIV?
I would tell them to take all the time they need to process this new reality. I would tell them that they may lose some family and friends, and they may also gain some new ones, but in the process, try not to lose who they are. I would advise them to find a community of other individuals who may understand the difficulties of living with HIV. I would also want them to know that some of us do learn to not only accept our diagnosis, but thrive because we didn’t allow it to defeat us.

How has COVID-19 impacted your life?
COVID-19 has only highlighted the disparities of which we had been speaking. It painted a portrait that the world was not yet ready to receive. As a Black woman of transgender experience, living in America has never been a cakewalk, but COVID-19 gave the rest of the country a taste of what true isolation felt like. It showed them that even though they yearned for the mere touch of their loved ones who may have been in proximity, the pandemic made them feel like they were millions of miles away. That's how some of us feel living with HIV. The pandemic has shown me that I had to learn how to humble myself and not allow the simple things to elevate how I felt. I will forever be changed by this pandemic, not only by the loved ones I’ve lost but by the mere fact of how I survived.

What effects do you think COVID-19 will have on the HIV community?
It has taken a couple of our powerful activists and advocates from us and has left a void that no one nor nothing can ever fill. It has made us realize the importance of our strength, and that it thrives in unity and diminishes in division. I may not know what the future holds for our community, but I try to remain as optimistic as possible. I would like to see more of us in places of authority that will assist us better in the time of a crisis. I know that many of our community members will need emotional wellness services, and I hope that they will be easily and readily accessible. We are what we need, we just need the resources to ensure our sustainability. 

Tony Christon-Walker
AIDS Alabama
Director of Prevention and Community Partnerships
Pronoun: He/Him/His

What does it mean to you to be a long-term HIV survivor?
Being a long-term HIV survivor keeps me focused on the fact that there is nothing I can’t overcome. I remember being diagnosed and given a death sentence. Literally, the disease intervention specialist said to me, “Get your affairs in order because you probably don't have long to live.” He was wrong. That’s the reason why I work so hard to help end the HIV epidemic. We’ve seen how messaging with the best of intentions doesn’t work with the COVID-19 pandemic. We asked people to wear masks to protect themselves and others, and many people who are at risk ignored those warnings. I almost smile when I remember that was the messaging about condoms when this all began. It’s interesting to see how people who don’t want to wear masks are called heroes in their circle of friends. Yet, we still shame people for contracting HIV.

What would you say to someone newly diagnosed with HIV?
I give the following advice to newly diagnosed people: Process your feelings about your diagnosis in the way you deem to be most appropriate. There is no road map to acceptance. Find someone you can talk to about your diagnosis, even if it’s me, and work through your grief. HIV is a manageable disease, and I can tell you from experiencing both HIV and cancer, you’re better off with HIV. You are not your diagnosis. 

How has COVID-19 impacted your life?
COVID-19 made me relive some of the feelings I had before I received my diagnosis. This time I made different decisions. This time instead of playing roulette, I took the necessary precautions to protect myself, my family and my community. While some organizations shut down and stopped doing testing, I was encouraged by my staff’s commitment to our community, and we made changes and made it work. I see COVID-19 as a poisonous snake; it’s dangerous when you don't handle it properly. I’ve been fortunate that no one close to me has died from it, but I do know several people who have survived.

What effects do you think COVID-19 will have on the HIV community?
COVID-19 will change the way we execute the work we do in HIV. For years, we have depended upon large gatherings of people in which we would screen and educate. We are not sure when we can return to any sense of normalcy, so we have to redefine the ways we engage with our community. In-person events are now virtual. We have to rethink the way we do mobile testing and other forms of outreach. My biggest concern is for those with the most compromised immune systems. I want to make sure that we stay safe and live long lives. 

To learn more about HRC's work with HIV and health equity, visit hrc.org/HIV.