Advocating for HIV Care

Ismael Ruiz Shares His Story With HIV

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

Ismael Ruiz photo

Photo courtesy of Ismael Ruiz / Designed by Julie Bang / Verywell

Meet the Author

Ismael Ruiz is a patient advocate for HIV working with Alliance for Positive Change. He is currently working as a Peer Intern for Avita Pharmacy with Alliance. Ismael is also training with the AIDS Institute and Department of Health to become a certified Peer Worker.

I was diagnosed HIV-positive and AIDS symptomatic in the 1990s. I was in my early 20s, and I thought my life was over.

Back in the day, there was heavier stigma around HIV. I felt ostracized. I felt that I wasn’t worthy of being around people because of my diagnosis. I pretty much became a hermit and never left my apartment, and I couldn’t get a job because who was going to let me take time off for my health?

I knew I couldn’t live like this; it didn’t really feel like I was living at all. I sought help from a mental health professional who referred me to Alliance for Positive Change. To re-enter the world, I needed community, empathy, and help to navigate the intimidating clinical scene.

Doing the Work

In 2006, I enrolled in Alliance’s career readiness education program for six months. This built my self-esteem and made me want to learn more about HIV and AIDS so that I could assist the community which has done so much for me. I then became a community member advocate for a patient program. I liked interacting with people who needed my help. It feels good to be needed.

My time helping patients gave me this new empowerment. I started to believe that I can control this disease. I don’t live with it, it lives with me.

Ismael Ruiz

I started to believe that I can control this disease. I don’t live with it, it lives with me.

— Ismael Ruiz

About two years ago, I moved into Avita Pharmacy through Alliance where I am currently working. This caters to the undetectable program, U=U (undetectable = untransmittable). This strategy of treatment uses antiretroviral therapy (ART) to reduce a person’s HIV to the point where it can’t be detected by standard blood tests. Having an undetectable viral load means that a person can’t pass on HIV through sex.

Part of this work is drug observational therapy. This includes making sure people take their medications and know how to read their lab results to ensure that they qualify for the undetectable program. We also have Treatment Chats on Tuesdays where we discuss our health journeys, the newest medications, and our experiences with them. It’s a forum amongst peers.

Treatment and Empowerment

When I was diagnosed, medication was not what it is today. The drugs were on a trial basis, so I had no idea if what I was taking would help me or hurt me. There were horrible side effects that made being in public too embarrassing.

One medication made me lose all of my body fat. The doctor didn’t know what was going on, and my bloodwork didn’t give any answers. So, I did some research on the medication and tried cutting the dosage in half. Slowly, I started to gain weight and my doctor was shocked. He said he would have never realized that the two-pill dosage was too strong for my system.

This is why you need to advocate for yourself. Doctors are overwhelmed, and everyone has their individual system and reactions. Only you know what is working for you.

Alliance really helped me with this. They instilled in me that I am my best advocate and that I’m capable of doing my own research, reading my labs, and understanding what to look for in those labs.

Ismael Ruiz

It made me feel like I could be present in the clinic and be more than just a patient. I learned to be proactive with my treatment.

— Ismael Ruiz

It’s empowering to do this around people who understand. It made me feel like I could be present in the clinic and be more than just a patient. I learned to be proactive with my treatment.

And it was the same with my mental health. When I was in a deep depression, I told my therapist that I wanted to be part of something again. He introduced me to a resource, but I made the steps to get involved. You have to want it for yourself in order for it to work for you.

Being Hispanic, brown skin, gay, and also HIV-positive, I have to really fight in this world. That’s what I’d like people to take away from this. No one is going to give you what you need unless you do it yourself.

At the end of the day, no matter what you’re going through, there’s always someone out there to help you. No matter how ugly the world is, there will always be some type of light. Just reach out and speak your truth. Everybody needs a little help and compassion.