Transcription:

Gillian: What is World AIDS Day? Many people may not be familiar with World AIDS Day, although it's my hope that this podcast serves as an informative introduction. Each year on December 1st, people worldwide unite in a fight against HIV. It's an opportunity to show support for people living with HIV and to commemorate those who have died from AIDS-related illness. Founded in 1988, World AIDS Day was the first recognized global health day.

Today, we are joined by two individuals who will bravely and graciously share their individual experiences, living with HIV.   This is Healthier You, a podcast from UPMC Pinnacle. Hello everyone. My name is Gillian Sumpter and I'm the community coordinator for the UPMC Pinnacle REACCH Program and proud to be the host of this special podcast.

I have more than 10 years of experience working with individuals living with HIV. During that time, I have seen the trends of HIV change drastically from access to care and support services to a shift relating to the stigma surrounding it. I am so excited to be here today, celebrating World AIDS Day in this very special way along with our guest speakers.

What may be a surprise to our listeners and those not familiar with HIV is that everyone is at risk of contracting it. In fact, one out of every 99 Americans will contract HIV in their lifetime. And there are some subpopulations who are disproportionately affected by HIV.

Nearly 38,000 people were diagnosed with HIV in the United States in 2018. Individuals who are gay, bisexual or identify as same-gender-loving or men who have sex with men accounted for 69% of those new HIV diagnosis. When broken down by race and ethnicity, African-Americans accounted for 42% of all HIV diagnoses in 2018.

We've also seen a significant shift from the early 1990s to present day in terms of who is most at risk of contracting HIV. Currently, women account for 19% of newly diagnosed people living with HIV in 2018. Locally at the REACCH program, approximately one-third of our patients are women. Our youth, those individuals between the ages of 13 to 24 are also disproportionately affected by HIV making up 21% of new diagnosis in 2018.

So the numbers are telling us a different story as we move through the decades. This is why it's important to meet people where they are at in their lives and educate ourselves, so we can successfully support our community in various ways.

As I mentioned, we are joined by two individuals who will bravely and graciously share their individual experiences living with HIV. One of our guests is considered a long-time survivor or someone who has been living with HIV for 10 years plus, and our other guests recently received a new diagnosis. Both have value perspective of what it's like living with this diagnosis. I would first like to thank both of you for participating in the podcast today and offering your stories and viewpoints as people living with HIV.

So, Steve, I'm going to start with you first. What message do you want to give someone who's been newly diagnosed with HIV?

Steve: My message would be to talk to someone, let them know what you're going through and develop a relationship with them. So that way, they can take you to and bring you into treatment.

Gillian: And Steve, what about your experience living with HIV? Have things changed when you were first diagnosed to now?

Steve: Yes, they have. When I first was diagnosed, I was on three different medications per day several time today and that was in 1990. Now, I'm on one medication and with just one regimen. And so it makes it possible, socially, mentally, physically and spiritually possible to live with the HIV and not feeling no constant sickness.

Gillian: Thank you so much for that, Steve. And this question is for Steve again. A lot of people may feel nervous at first to get tested for HIV. Is there anything you'd like to tell someone who may be scared to get tested?

Steve: Yes. You'll be better off being tested, so that way you can know, because not knowing isn't the antidote. The antidote is to have the power and the knowledge and the education. So it's not as bad as it appears, but to get tested, you can go from there.

Gillian: Thank you, Steve. That was great feedback. Tony, what about you? What information would you tell someone who may be scared to get tested?

Tony: I agree with Steve. I would tell them to just go ahead and get tested anyway. It's your body, it's your health and what better way to protect yourself and the people that you care about than to get tested. And it's not even just with HIV. Look at it from another medical vantage point. I mean, people get colonoscopies to make sure they don't get colon cancer. You know what I mean? It's the same thing with HIV, you have to test yourself. And then when I first got diagnosed, people would tell me all the time, "It's not a death sentence. It's not a death sentence." And so much so to the point where it got to be like a cliche a little bit, but the reality is that it's true.

At this point, you're not going to die once you get tested and you are positive, you know. There are people out there that are willing to help. The REACCH program helped me. When I first got diagnosed, I didn't know where to go, what to do, and my doctor gave me the number on to getting care. I called them. They set everything up and it's been smooth sailing ever since, as far as being in care, you know, for me.

So I would definitely tell people, especially in this area, the Harrisburg area, please go get tested because there are people that are willing to help. They have the information to help keep you educated. They'll get you where you need to be.

Gillian: Thank you so much, Tony. That was amazing. This next question is for you as well, Tony. What do you think can be done to combat the stigma of having HIV?

Tony: I think we need to start having more honest conversations about sex and sexuality. I think in order to combat the stigma. It's kind of difficult because people want to have conversations about sex without feeling uncomfortable. They want to feel like there are no consequences to these kinds of things, but sexually transmitted diseases are natural. There's something that happens and there's no reason to shame somebody for them. But in order to hit the stigma on the head, you have to challenge those fears and those initial responses that people have when they think about HIV, because most of the time, those people aren't educated on what it is, how it's contracted.

You know, I had somebody tell me one time that they wouldn't play basketball with someone who's HIV positive because if they bled out on the court, that would put everybody at risk and that's not true. So we have to have these forward-thinking conversations and get past the initial fear of HIV itself.

Because just like with race, there's no way you can have conversations and not be uncomfortable. It's uncomfortable for anybody to go into a doctor's office and get tested and not know what's going to happen, you know. But that's where we have those conversations and we stop. We don't want to think about what HIV really is, how it's contracted. We'd rather think in our own minds what I feel about HIV is true as opposed to knowing the facts. So I think we should start there.

Gillian: Amazing. That's amazing feedback. Steve, what about you? What do you think can be done to combat the stigma of having HIV?

Steve: To combat the stigma, once one knows what they have, they can become empowered. And so by knowing where you are, what your numbers are, what's going on with you, you can go up against those that are speaking illiterately. And once you come under our umbrella of care with the dental, the medical, the psychological, the physiological, and allow yourself to bring in a power greater than yourself, so it can give you some stability.

And with that, you'll be able to navigate through. And the longer you go forward, you get stronger. You're more prepared to explain to another if they need to know. Because if you become informed and educated, it's easier to talk to a person that don't know or either are scared, just straight out scared. You can talk them off the ledge.

Gillian: So Tony, what about you? In the last few years, science has proven that people living with HIV that are undetectable are unable to transmit HIV to their sexual partners. And that goes to say that, you know, as long as people take their medication, they are able to achieve this undetectable status. So what has U=U meant to you, Tony?

Tony: I had seen it for a while now being in the doctor's offices and stuff. I guess U for U means to me that there's no risk of contracting the virus if someone were to have sex with me. And I guess that's pretty much it. I've seen the campaign. To be honest, I didn't really feel connected to it. And it's not a bad thing. It's just I'm still trying to understand the science behind it. I'm someone that once I got to be undetectable, I wanted to know like what it was and what's happening to my body. So, I guess, like I said, it just comes down to my status and your status, not to say they don't matter, but it's just that. And we know, and we can take care of ourselves the right way.

Gillian: Thank you for that. Steve, what about you? What does U=U mean to you?

Steve: U=U for me means first it was a sigh of relief and it opened up some lights of hope. Because of living with the illness and not being able to transmit it to others, it just allowed me to feel psychologically stable. It uplifted me and then allowed me to put in to forward motion. I can be a father. It gave me a full range of hope, because living after 30 years, and until that happened, I too was stunned. I was told that once you have it, you can transmit it. And now it's U for U? It shows me that the scientific community did not give up hope. They didn't give up, you know, and they brought about a lifeline to life and it's no longer a disease that you will die from. It's turned around. We're living and we're going to live until they find it a cure, which I see very optimistic in the future.

Gillian: That's wonderful. Tony, how can someone living with HIV get into treatment? I know we had talked about the REACCH Clinic. Is there anything specifically that you would give to someone who is looking to get into treatment for HIV?

Tony: I would say talk to your general practitioner first, because that's where I got the information about REACCH from. I did my STI test at the doctor's office and when the results came back positive, they handed me a number, like I said, for the REACCH program. And before that, I didn't even know that the REACCH program existed. But, luckily in Harrisburg, you have Hamilton Health, you have GLO, the REACCH program. There's lots of different programs here in the city that can help get you tested and even give you the information that you need, not even just when it concerns HIV and getting into care. And those are important by the way.

Gillian: Thank you for that. Steve, what about you? Do you have anything to offer to people who are looking to get into treatment for HIV?

Steve: Yes, I do. Now as the young man said, there's many clinics, there's many doctors. The whole spectrum has broadened. Because when I was first told 30 years ago, it was over the phone. It's not like that now. They have counselors. They know how to gently give someone the truth. So once you have it, there's a will and there's a way that you can live with it. So treatment is the lifeline. So nowadays, it's an easier softer pill to swallow.

Gillian: Thank you so much, both of you, for your time today and sharing your experiences. You guys are living brave and I really appreciate you. And I know everyone here at the REACCH Department appreciates you as well.

Tony: Oh, thank you for having us.

Steve: I thank you much always.

Gillian: Thankfully, Central PA has options for people living with HIV to receive treatment. Our partners for this podcast are Hamilton Health Center's HOPE Program and GLO Harrisburg. In addition to the comprehensive HIV services available at the REACCH Program, the HOPE Program at Hamilton Health Center provides expert HIV care in a confidential community setting.

The HOPE team provides comprehensive medical care and supportive case management for people living with HIV as well as free private HIV testing for anyone over 18. For more information, people may contact the HOPE program at (717) 230-3949. You can also contact the REACCH Clinic to schedule an HIV test by appointment at (717) 782-2750.

GLO is a community resource center, serving LGBTQ plus men of color and trans women of color ages 14 to 29. GLO serves as a recreational drop-in space that provides HIV and STI testing, linkage to PrEP and other social services.

Join GLO for their Linked Up Lunch on World AIDS Day, December 1st from 1:00 PM to 4:00 PM. GLO is offering cater to-go meals to the first 10 people that schedule an appointment on World AIDS Day. You can make an appointment to get linked up to a member of our staff for free and confidential HIV testing or to discuss resources available to someone living with HIV. Only 10 appointment slots are available. Please contact This email address is being protected from spambots. You need JavaScript enabled to view it. or call or text (717) 743-1908 to request an appointment.

Links and contact information for the UPMC Pinnacle REACCH program and our partners can be found in the show notes.

Thank you again to my guests, Steven and Tony. And if you found this podcast helpful, please share it on your social channels and check out the full podcast library for topics of interest to you.

This is a Healthier You, a podcast from UPMC Pinnacle. I'm Gillian Sumpter and thank you for listening.