Verywell Health's Health Divide Series: HIV, featuring Four Alliance PEER Graduates

https://www.verywellhealth.com/health-dividehiv-5210031 Health Divide: HIV

Medically reviewed by Anju Goel, MD, MPH Updated on November 22, 2021

THE IMPACT OF HIV HIV (human immunodeficiency virus) does not affect all groups equally. In the United States, Black and Latinx people, men who have sex with men (MSM), trans women/transfeminine people, and the trans community at large are disproportionately impacted.

Women are twice as likely to get HIV and three times more likely to die from the disease than their male partners.1 There are many reasons for this, but poverty, unequal access to healthcare and employment, stigma, racism, sexism, and unequal access to education all play key roles.2 Injecting drug use also contributes, particularly among MSM,3 trans women,4 and Latinx people.5 Today, Black people in the U.S. are eight times more likely to be diagnosed with HIV than White people,6 while MSM are five times more likely to be HIV-positive compared to all other groups.7 Research suggests Black MSM have a 50% chance of testing positive for HIV in their lifetime due to compounding structural inequity.8 Moreover, nearly two-thirds of Black trans women and over one-third of Latinx trans women are living with HIV in the U.S. today. 4 The same social and economic barriers that fuel HIV infection rates are evident in lower rates of testing and higher rates of treatment failure in disproportionately impacted groups. Among Black people living with HIV, only 59% have received care. Of those who have received care, only 43% are able to fully suppress the virus with treatment. By comparison, 67% of White people with HIV are linked to care, while 57% have been able to achieve complete viral suppression.9 In addition, language barriers and the current public debate about immigration are other reasons why Black and Latinx migrants are more likely to delay HIV testing and treatment until the condition advances.5 There are no easy answers to any of these concerns, but, by focusing on treatment, prevention, and disproportionate areas, the federal government hopes to slash the number of new HIV cases by

at least 90% by 2030 under its Ending the HIV Epidemic in the U.S. (EHE) initiative.10 In an effort to support these goals, the latest destination in Verywell’s Health Divide series aims to provide:  Educational insights into how poverty, stigma, racism, transphobia, homophobia, inequality, and other factors place different groups at risk of HIV in very different ways  An understanding that through testing and then treatment HIV can be suppressed  An understanding of how historic shortcomings continue to discourage many disproportionately impacted people from accessing HIV testing and treatment  Stories from people who have experienced the challenges of living with HIV firsthand  Resources to help people with HIV or who belong to a group disproportionately impacted by HIV access services, get information, find support, acquire financial assistance, and learn where to find free testing -- James Myhre, HIV educator, & Dennis Sifris, MD, HIV specialist

Verywell / Julie Bang

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PERSONAL STORIES

Making Positive Change in the HIV Community

Eugene Eppes

FEATURED RESOURCE

Alliance for Positive Change Verywell Health collaborated with Alliance for Positive Change on this destination in our Health Divide series. Alliance for Positive Change is a leading multi-service organization that helps New Yorkers living with HIV and other chronic health conditions access medical care, manage and overcome substance use, escape homelessness, get back to work, and find community.

They deliver on the promise of positive change with services and resources that equip people to navigate systemic inequities and achieve health and well-being.

LEARN MORE

https://www.verywellhealth.com/eugene-eppes-my-journey-with-hiv-5209983 HIV/AIDS LIVING WITH

Making Positive Change in the HIV Community Eugene Eppes shares his personal journey with HIV By Eugene Eppes Published on November 18, 2021 Fact checked by Nick Blackmer Print

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

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

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.

“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).

“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.

“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.

“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.

Coping and Living With HIV

https://www.verywellhealth.com/ismael-ruiz-my-journey-with-hiv-5210645 HIV/AIDS

Advocating for HIV Care Ismael Ruiz Shares His Story With HIV

By Ismael Ruiz Published on November 29, 2021 Fact checked by Nick Blackmer

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

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

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

I was diagnosed as 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 a 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 The 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 the 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 special needs 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.

“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 the 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.

Related: How HIV Is Treated

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.

The 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.

“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 dark 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.

Living and Coping With HIV

https://www.verywellhealth.com/nicky-bravo-my-journey-living-with-hiv-5211193 HIV/AIDS

Overcoming Obstacles in Living With HIV Nicky Bravo shares her journey with HIV

By Nicky Bravo Published on December 02, 2021 Fact checked by Nick Blackmer

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

Photo courtesy of Nicky Bravo / Designed by Julie Bang / Verywell

Nicky Bravo is a peer mentor in the women’s program at Alliance for Positive Change in New York City. She helps women with HIV get access to medical care, learn financial management, and maintain their treatment plans.

It would be an understatement to say that I had a troubled childhood. As a child, I was physically abused and taken away from my birth mother. I dropped out of school and grew up fast by getting into unhealthy relationships with men. I started using drugs: first cocaine and alcohol, and later crack cocaine and injecting heroin.

I became a sex worker and took HIV tests at mobile sites, because they paid you to get tested. That was how I found out I was HIV-positive in 2001.

I wanted to kill myself. I didn’t have any friends or a support system, and I hadn’t seen my family for years because I didn’t want them to see the way I was living. I was alone, and this diagnosis made me feel even more alone.

Following the Diagnosis After my diagnosis, I was still doing sex work, which was the only work I knew that was able to put money in my pocket and support my drug habit.

I ended up getting arrested and was sent to prison, where I started to see a doctor. This was the first time I had seen a doctor beyond mobile pop-up events. I started taking care of my body and got on an HIV medication, Atripla.

There was a stigma associated with HIV in prison. I saw how people with HIV were treated, so I would sit in my cell and cry, because I couldn’t share this big secret. Imagine being in such close quarters with a thousand women and not being able to tell them this huge thing that affects you every day of your life.

“I had a lot of guilt and a lot of shame in my life.”— NICKY BRAVO I did a drug program and became eligible for work release. I spent some of my time in groups with other women who had experienced some of the same issues I had.

During these sessions, I started opening up about myself and my status. I started to take accountability for everything and all the people I had wronged. After talking about it, I started to feel a little bit better about myself, because I had a lot of guilt and a lot of shame in my life. I always thought that I was damaged goods. This was the first time I had felt real companionship.

Returning to the Community After my release, I knew that if I came home I couldn’t be around the same people and places as before, because I could get caught up in drugs again.

But I thought maybe I could give back and help people struggling to accept their status.

I went to HIV information trainings. I got a room through Housing Works, and one of the counselors there took me under her wing, which made a huge difference for me. I started to put myself back together, and I wanted to help people.

I met the love of my life through the Family Center’s Positive Life Workshop.

We’ve been married for nine years. He understands my journey, and we support each other.

I was also able to get my sister back into my life, and I was able to reconnect with my father before he passed away.

Working With the HIV Community I’ve been with Alliance for Positive Change for about eight years. They have been amazing and treated me with kindness.

A big part of my job is recruiting women to our programs who are in situations I used to be in and helping them feel supported, like I wish I had been before I went to prison. I visit them at their homes and help them manage their money, like going food shopping with them. I go with them to appointments and the pharmacy for medication.

I also help them move from single-room-occupancy living situations to permanent housing, and help facilitate groups for hundreds of women in Alliance programs. Basically, I give them the support network I wish I had then and do have now.

“If it wasn’t for people who do this kind of work, like I do now, nobody would have helped me all those years ago.”— NICKY BRAVO My responsibilities don’t end when they walk through our doors or join a group workshop. I follow their journeys, oftentimes for years.

One woman I’ve worked with was living with an abusive relative, and I walked with her to the HIV/AIDS Services Administration (HASA) and sat with her for almost 10 hours as we met with people to go through the bureaucratic process toward getting her safer housing.

Where I Stand Today

I’ve learned how to deal with a lot of my guilt and shame. I don’t medicate my feelings anymore. I have a good network of people in my life. I feel that if you can’t accept me for me, I don’t need you in my life, and you’re not worth being around. I need productive, positive people in my life.

You have to have some type of passion in order to be in the line of work that I’m in. Everyone that I’ve come across at Alliance has a passion. We’re here to provide important services. I’m going to continue to stay active and continue to help whoever comes to Alliance, because if it wasn’t for people who do this kind of work, like I do now, nobody would have helped me all those years ago.

I’m really grateful that I am where I am today. I’ve been through a lot, but despite everything, there is a reason why I’m here, even living with HIV. I’m just going to enjoy life, because for a lot of years I wasn’t able to enjoy it. No matter what, people can change their lives. They just have to want it and have a support network.

https://www.verywellhealth.com/lillian-anglada-my-journey-with-hiv-5211389 HIV/AIDS

Creating Space for Women of Color With HIV Lillian Anglada’s Journey With HIV

By Lillian Anglada Published on December 01, 2021 Fact checked by Nick Blackmer

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

Photo courtesy of Lillian Anglada / Designed by Julie Bang / Verywell

Lillian Anglada is President of the Consumer Advisory Council for Alliance of Positive Change and a long-time patient advocate for HIV. I looked for love in all the wrong places and didn’t realize that I got infected with HIV. I was infected in 1986 and later diagnosed in 1989. My husband and I were given two years to live. He passed away exactly two years later, and I’m still here.

I quit my job of 10 years because I didn’t want the company to know what I had. I used my retirement money for my daughter’s “Sweet 16” because I didn’t think I would be around much longer. It was worth it.

Getting Involved in the HIV Community I started volunteering for the Peter Krueger Clinic doing data entry, and I was quickly intrigued by people’s reluctance to get health information.

In 1992, I went to an event called “Love in the Time of AIDS,” a health street fair to bring HIV education to communities of color. The goal was to meet people where they were, because it was hard to get them to come to you.

Agencies started doing more HIV outreach. They went to the community parks, where they had barbecues, musical performances, games, clowns, and more. These events made people more comfortable seeking help.

“Agencies started doing more HIV outreach...these events made people more comfortable seeking help.”— LILLIAN ANGLADA One of the agencies at the health fair was the AIDS Service Center of Lower Manhattan, now called Alliance for Positive Change. They were hosting an eight-week Peer Leadership Training Program to empower people living with HIV to educate and help their community. I graduated from the program in 1993.

Out of the 12 people who did the program, I’m the only survivor.

Women Need Other Women

After graduating, I served as a Peer Educator in the Women’s Health program. I ran support groups, took women to clinics, and helped them cope with their new diagnoses. We did a lot of Reiki, massages, acupuncture, and other things to help regulate stress.

It was hard for me to find support groups for heterosexual women with HIV and children who weren’t also displaced or struggling with substance abuse.

So my time with these women really helped me.

“It was hard for me to find support groups for heterosexual women with HIV...so my time with these women really helped me.”— LILLIAN ANGLADA We would talk about what it means to be a woman and what that identity meant to each of us. I would say a woman is loving and caring, sometimes cries a lot, and needs nurturing. A lot of these women never had that kind of nurturing. Their parents didn’t tell them they loved them, and they rarely got physical affection.

When I came to the agency, all I got were hugs and kisses. It was a little odd at first. My mom didn’t do that, and my dad wasn’t there. But to hear someone tell you they love you is truly amazing.

A lot of these women came to my meetings very resistant. But apart from the relaxation, it was fun. We taught sex education and how to love yourself and pleasure your body.

People came miserable and left happy.

Related: Best HIV Support Groups

Becoming a Leader The outreach center I worked at is now called the Luis & Lillian Outreach Center, named after me and in memory of my fellow staff member who passed away.

I also got to host what we call “Life-Affirming” events: Thanksgiving and Christmas feasts, Mother’s Day of Pampering, Valentine’s Day dances, and more. Everything was free, and I got all of the food and entertainment donated.

I became President of the Consumer Advisory Council for Alliance in 2003. In the same year, I started Caring Hands for Positive Women, Inc., where I was allocated small funds from the Hispanic Federation and other organizations to do health fairs in their communities. This community-based organization in East Harlem is focused on women of color to help them make educated, healthy choices.

Related: HIV and Health Disparities in Latinx Communities

Live Every Day for You HIV is not a death sentence. You can live with HIV with the proper medication. Take care of yourself and set goals. Ask questions about your medication and do your own research because, at the end of the day, it’s your life.

Read Next: Coping and Living With HIV