Making Positive Change in the HIV Community

Eugene Eppes shares his personal journey with HIV

This article is part of Health Divide: HIV, a destination in our Health Divide series.

Photo of Eugene Eppes

Photo courtesy of Eugene Eppes / Designed by Julie Bang / Verywell

Meet the Author

Eugene Eppes is a Community Linkage Specialist at Alliance for Positive Change, working on Alliance’s Criminal Justice Initiative. He works with members of the HIV community who are transitioning from incarceration to re-entry into society, focusing on access to medical care and housing.

In 2009, while working at a hotel resort, I experienced a health scare. I wasn’t seeing a doctor regularly, so I visited the local health department. This visit led to an STD test, where I was advised to get an HIV test too. I took the HIV test and learned that I was positive.

Right after my diagnosis, I was sent to prison for an extended period of time. During my time in prison, I decided to begin a medication regimen. In my case, access to care was available and affordable.

Entering the HIV Community

When I was released from prison, I started receiving medical care through Housing Works in New York City, which is an organization that helps find housing for people living with HIV/AIDS. Then my case manager told me about Alliance for Positive Change, an organization dedicated to helping people living with HIV in New York City get access to care, peer support, housing, and an array of other services.

I was on parole and looking for housing anyway, so I decided to visit Alliance. I didn’t want to go in, because they had signs outside referencing HIV testing. I hadn’t disclosed my status to the community. I hadn’t even dealt with the process of disclosing to my family and friends at that point. With the stigma associated with HIV, I was nervous to go in. That was one of the many masks I was wearing.

Eugene Eppes

With the stigma associated with HIV, I was nervous to go in. That was one of the many masks I was wearing.

— Eugene Eppes

I asked my case manager to go in and fill out my housing application for me, because I didn’t want to attach myself to that place. But he told me I had to go in and do this for myself.

When I went in, I met with an intern who did my intake and started telling me about the Peer Recovery Education Program. He thought I would be a good candidate for the program, but I had just started working and needed to earn an income to support myself during this journey. The program was Monday, Wednesday, Friday from 9:00 to 3:00. Those times conflicted with work.

I had to make a decision whether or not to do the program, but I decided to do it. I was in the program for eight weeks and then graduated.

I did another six weeks of a course called Health Coach, with facilitators who teach you about topics such as case management, documentation, treatment adherence, and how to reach clients who had the same experiences as me, working peer to peer.

I was all in. I didn’t actually think I was good enough to do a job like that. I didn’t know that my lived experience could be a teaching tool for somebody.

Working With the Community

After becoming a health coach, I became a facilitator and training coordinator for a program called the Positive Life Workshop, which is for newly diagnosed individuals living with HIV to learn self-management. I did that for two years, until they moved me over to a program called the Criminal Justice Initiative (CJI).

Eugene Eppes

I didn’t know that my lived experience could be a teaching tool for somebody.

— Eugene Eppes

The CJI program is for individuals who are released after serving prison time and have to reintegrate back into society. I connect them to re-entry services, primarily for medical care. I also help them with housing, keep them connected to their parole officers, and help them get support services at Alliance.

Taking Care of Yourself

The work can be rewarding, but I also find that you still have to work on yourself. You have to talk to a counselor. You can’t bottle things up. You can’t hold things in, because in the past, those are the things that got us into the situations we’re in now. So I keep learning about myself and try to be a productive member of my community.

Eugene Eppes

It’s discouraging to try to help one community and at the same time hide a part of yourself from another community.

— Eugene Eppes

We pick up tools along the way to do our job more effectively, and we have to prioritize self-care. If we’re not taking care of ourselves, we can’t take care of others. And we have to lead by example. We say to our clients: “Know your status. Check-in regularly. Take your medication as prescribed.”

Access to Care

I myself have experienced trials and tribulations with accessing care after being released. Some people don’t have insurance. People who are new to the workforce might be reduced to a certain amount of services a year. So that can become frustrating and leave a bad taste in any person’s mouth.

When they say they don’t want to go to the doctor, I understand it. No one wants to go there and wait all day. Sometimes what goes on in the waiting room is traumatizing. The way that you’re treated by a provider can be traumatizing. There are a lot of contributing factors to access to care.

We’re transparent with our clients about what happens, and I feel that when you acknowledge the difficulties, it gives them a little more drive to access medical care. If you give the guidelines for how to access it, and what to do in those times of difficulty, I think it becomes easier.

Addressing the Stigma

The stigma associated with HIV is an issue. I don’t disclose my status to everyone, because a lot of people don’t wish you well. But in the type of community that I serve, I feel that it’s important for me to disclose. I’m letting my light shine so people can see the transformation and want to feel better, live better, and do better.

Eugene Eppes

I’m letting my light shine so people can see the transformation.

— Eugene Eppes

In my personal life—in my neighborhood and my community—it can be dangerous to share your status, because of social media, which can lead to cyberbullying. Or people use your status as a weapon against you. It’s discouraging to try to help one community and at the same time hide a part of yourself from another community.

I just want to prove that things are possible. The title of our organization is Alliance for Positive Change, and I really believe in that name. We’ve joined an alliance with the people in our community. The positive change is what you make of it.

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