Finding out that you have HIV is often an alarming and overwhelming experience—especially as a young person.

Even though HIV is no longer a death sentence, managing the virus (like managing any chronic condition) is time-consuming and takes a lot of courage, even for adults. No one should have to do it alone.

Mount Sinai Adolescent Health Center’s Project IMPACT (Improving Access to Care and Treatment) provides comprehensive, integrated care to HIV-positive and HIV-negative, high-risk young people in the NYC area. We talked to two of Project IMPACT’s social workers, Xiomara Ayala, LCSW, and Zachary Fried, LMSW*, about HIV stigma, challenges in accessing care, and how the program works to support and empower young people dealing with HIV.

In case you need a refresher, HIV (human immunodeficiency virus) attacks the body’s immune system. It’s transmitted through blood, semen, vaginal fluids, and breast milk. If left untreated, HIV can become AIDS (acquired immunodeficiency syndrome), which makes it incredibly difficult for the body to fight off infections. This can lead to serious health consequences, and even death. However, with the right medications, HIV-positive individuals can lead normal lives and live as long as those who are HIV negative. There is not currently a cure for HIV.

*Please note: Both Xiomara and Zachary also see patients who are NOT a part of Project IMPACT.

Q: What is Project IMPACT?

Zachary Fried: Project IMPACT is our program for people who are affected by HIV.  It used to be primarily for patients who are HIV positive. That part of the program includes medical case management, so we’ll help with benefits, housing, medical visits, health literacy, and also provide mental health care. We try to engage all our patients in therapy, but we also understand that not everyone is interested, so we just remind them that we’re always available.

Recently, we got a grant to work with patients who are HIV negative and at high risk of acquiring HIV. To work with those patients, we mainly assist in risk reduction counseling, in addition to improving access to Truvada [the only FDA-approved medication for PrEP, or pre-exposure prophylaxis, which helps prevent HIV infection]. We help with adherence, benefits and insurance concerns, and general access. We also have the longest running HIV support group in NYC, which meets every Thursday.

Q: Besides discussing PrEP, how do you engage high-risk youth?

Xiomara Ayala: We talk about their behaviors and what triggers those behaviors—why they aren’t using condoms, and any substance-use issues that might lead to impulsive behavior. We also discuss issues with acceptance and not being accepted by their family, which may lead to looking for acceptance in other places.

ZF: Also just communication and self-advocacy. We talk about how to have a conversation about risk reduction with partners. A lot of the time people expect others to behave in the same way that they do, so they trust that their partners will tell them if they have HIV. That can increase your risk if you don’t know how to have that conversation.

Q: Can you talk a bit about your roles in Project IMPACT?

XA: We’re both social workers in the program, and we work very closely together. The kids know us both. We both sit in on our patients’ medical visits, and we help them with advocacy and entitlements. We make sure that they get their medication, and that they’re adherent.

Q: What are the most common challenges to adherence?

XA: I think it’s acceptance. Young people have to accept their diagnosis, and they need to have people that they can talk about their diagnosis with.

ZF: Definitely self-disclosure. Some people can’t even take their medication without people hearing them open the bottle, so we’ve worked around that and gotten patients pill boxes and different packaging so it’s quieter. Something as simple as noisy pills can be a huge barrier. Some people don’t want to be reminded that they have a diagnosis.

Q: What can someone who is HIV positive expect the first time they come to Mount Sinai Adolescent Health Center?

ZF: Our linkage coordinator Charlie Solidum will meet them before they even get inside the Center, and ensure a smooth transition to care.

XA: Charlie really eases the process as far as registration. He sits with them and does the warm hand-off to us. Then, we meet with them to figure out where they’re at in the process—whether it’s a completely new diagnosis, or someone who’s been diagnosed but coming in for care for the first time. We go with them to the medical appointment and that way we’re all on the same page.

Q: What are some of the biggest barriers to accessing care?

ZF: Social issues. If someone is homeless, their first priority isn’t to come to the health clinic. They’re going to be focused on getting food. If someone’s basic needs aren’t getting met, it’s hard to work on more complex issues like HIV.

Q: According to the CDC, only 22% of high school students who have ever had sexual intercourse have been tested for HIV. Why do you think the testing rates are so low?

XA: The education system. Health education in schools is practically nonexistent, and a lot of them use scare tactics. Students hear about how horrible HIV and AIDS are, and think: “I don’t want to know my status.”

ZF: Yeah, scare tactics can just stigmatize HIV more. I feel that a lot of people don’t like to give young people information because they want to scare them into doing what they want them to do. Young people are able to make their own decisions when they have information, but when they’re only exposed to scare tactics, they’re probably going to shy away from the whole topic.

Q: Is there anything else that you want people to know?

XA: Help is here. If you’re concerned, then come in. If you’re worried or just want to talk, whether you’re HIV positive or not, we’re here to answer questions and to help you navigate your life and help you make the decisions you need to make. It’s a chronic illness. If you adhere to your medication and follow up with your doctor when you need to, you can control it, and you can live the life you want.

If you’re 10-24 years old and live in the NYC area, you can come by Mount Sinai Adolescent Health Center for completely free and confidential STI testing, including HIV.

Xiomara Ayala, LCSW, graduated with her MSW from NYU Silver School of Social Work in 2005. Since then, she has focused on therapeutic work with adolescents and young adults in a variety of settings, including home-based substance use treatment for juvenile justice-involved youth and mental health and crisis services at a community health clinic. She has been with Mount Sinai Adolescent Health Center for a little over five years, working with both the mental health clinic and Project IMPACT.

Zachary Fried, LMSW graduated with his MSW from the Silberman School of Social Work at Hunter College in 2014 and works at Mount Sinai Adolescent Health Center for the Project IMPACT, Primary Care Social Work, and Mental Health programs.  Zachary has worked at Mount Sinai Hospital since 2014, when he began working with Medicare recipients to reduce hospital readmissions. Zachary has experience in HIV testing, prevention and research, and is particularly interested in the intersections between physical and mental health.

The Mount Sinai Adolescent Health Center is located in New York City. It provides comprehensive, confidential, judgment free health care at no charge to over 10,000 young people every year. This column is not intended to provide medical advice, professional diagnosis, opinion, treatment or services to you or to any other individual, only general information for education purposes only.