Karl Schmid speaks with activist, Joe DiPaolo
KARL
In 1995, they said that I had about five to seven years left to live, and here I am.
Hello there, and welcome to “Plus Talk” on Plus Life, where we’re all about turning positive into a plus. Now, you may have heard of Ryan White, and you’ve probably heard of Joe DiPaolo, or as he was known back in the late ’80s, early ’90s, Joey DiPaolo, and he joins me now. Hey, Joe, good to see you, sir.
JOE
Hey, how are you, how’s everything? Thank you so much for having me.
KARL
Look, it’s my pleasure, and the reason I wanted to have you on “Plus Talk”, we talk a lot on here about stigma and fighting HIV stigma, and nobody knows that probably better than you, because if we go back to the early ’90s, as I said in the intro, we heard about Ryan White and his story, but you had a very similar story for yourself, with a blood transfusion where you got some contaminated blood, and then everything blew up, because you, if I have it right, decided to take your story into your own hands. Tell us a bit about it.
JOE
Well, going back, just to recap on that, in 1984, I had a blood transfusion. I had ASD, which is Atrial Septal Defect. They corrected that, and during the surgery, I lost a lot of blood, needed a blood transfusion, and the blood that they gave me was contaminated with the HIV virus. We did not know that I was actually infected with the virus until about four years later. At the time, back in 1984, me being four years old, people my age were not coming down with HIV. It took a few years, and finally, we decided that we were gonna test because of all the symptoms and the signs that I was showing. It ended up that I was infected with the virus, and we found out in 1988, and in 1990, I actually went into septic shock. My kidneys shut down, I had very low blood pressure. They’re saying that if I was to actually make it out of the 48 hours, that I would probably have brain damage and I would have no arms and legs, they would’ve to amputate them because of the blood flow. Ends up that I came out of it, and while I was in recovery, I decided that I didn’t wanna live this lie anymore. I wanted to let people know who I am, what I had, and I wanted to be me. At this time, Ryan White was all over the news and everything, and it was actually his funerals that they were showing, because he ended up passing away. And in my eyes, with him as my role model for someone who had HIV/AIDS, I felt like, who’s educating the people? Who’s educating the teens? Who’s educating the the kids in schools? And I wanted to continue his fight, so I decided to go public.
KARL
That’s a huge thing for a young kid to take on, and if anyone has seen the HBO film “Blood Brothers”, and I don’t know how close to factual that is, but in that film, we see resistance or hesitance on your father’s side to do that. How do you come to that conclusion as such a young man, and then convince adults around you who say, “We’ve gotta keep this quiet,” to actually go out and do it?
JOE
Well, at the time, because of the stigma and everything, people were, like the Rays down in Florida, they were having their house burned down, and Ryan White, he was run out of his hometown. So my parents were nervous, but because they understood how I felt, they were willing to fight with me and to let people know who I am and what I had. Of course, we kept it small in the beginning and we told a lot of the family members who did not know, we told a lot of the closer friends. I had one of my best friends who found out, and his family at the time, they said, “Well, you’re like a son to us.” And to me, the acceptance that I had from that family was amazing, and it gave me the courage to continue to tell people. And little by little, as I was telling people, it was just an amazing reaction that I got from a lot of the close friends and family. Of course, we did have our negativity. People shied away from us, they were afraid. This couple that my parents were friends with for such a long time, we used to go swimming in their pool every summer and everything, and all of a sudden, this one summer, they never invited us over again. So we ended up, I got discriminated against too, so it wasn’t a walk in the park.
KARL
It’s interesting, I was, in doing preparation for this interview, I read that New York Times article about you that was done in 1995, and one of the pediatric AIDS doctors that you were under the care of called you the healthiest longterm survivor of the disease, with a life expectancy of another four to seven years. That was 1995. Here we are, you’re 42 years old; married; children. When you hear those kind of statements, and I just wanna read a quote back to you that you said in that article, you said, “I want to have a family and everything, but I’m not going to be able to have kids. I want to go to college, and I want to continue educating people about AIDS.” When did the shift come for you that you realized, actually, you are gonna have a family, you are gonna have kids, and you’ve gone to college and you’re still continuing to educate people?
JOE
I tells you what, it was an amazing life experience that I had, and I’m still having to this day. I was always, back in the day, they only gave me a year to live. Then I had 48 hours to live in 1990. Then in 1995, they said that I had about five to seven years left to live, and here I am, beating these obstacles. I always said that if I wasn’t able to have a family, I would always adopt or do whatever I had to do to have my own family, whichever way you wanted to slice and dice it, and as time went on, yes, I was able, through experimental drugs and through research and everything, I was able to be blessed and to have my own family. Now, of course, with my first child, with Joey, we ended up doing the steps that we needed to do to have her, to have the sperm washed and everything. My doctor at the time said, “Joe,” he goes, “You sure you want to go through with all this? Because you can have a baby naturally if you wanted.” I said, “Well, what’s the chances that my wife, God forbid, would become infected with the virus?” He said, “She’s about anywhere from 96 to 98% safe.” I said, “That’s not enough.” I said, “I want a hundred percent. If it’s not a hundred percent, I don’t want that on my conscience for the rest of my life.” We had my first baby, we had Joey, and everything was fine, everything was good, and a few months after she was born, we found out that, through research and everything going on, that people who are undetectable are untransmittable, and we could end up having a baby on our own. Great after we went through the process, but you know what, everything happens for a reason. And then of course now, with that research and everything going on and that new information, Vivy ended up coming, and she was natural.
KARL
That’s gotta be a remarkable moment, I can only imagine, for you as a couple to be able to conceive a child naturally, when, for all your life, and so many people out there still believe that that’s not possible.
JOE
Oh, it is. It’s an amazing, I’m a living experience, and I could say that firsthand. We also, we have an Instagram page that we use to promote AIDS education and everything with my daughters and my wife. She runs the page, I’ll answer questions and everything, and the past few years, I’ve gotten so many people, especially from out of the country, that wrote to me, saying, “Joe, I wanna start a family with my wife, I was just diagnosed. Is there any way that this could happen? I see that you have a family. Is this possible for me?” And I said, “Yes, as long as you’re undetectable. Take your medications the way your doctor’s telling you to, keep getting tested to make sure that you’re undetectable, and as long as your significant other is okay with it,” I was like, “you can have a family.” I was like, “And it will happen for you.” People are writing me back months later, “Joey, thank you so much. My wife is pregnant and we’re having a baby,” and it’s just, it’s amazing. It’s amazing the breakthroughs that we’ve been through.
KARL
Yeah, and as you stand back now as a 42-year-old man, and you look at how far the world has come, and especially through your eyes, because through no fault of your own, you were a kid at the height of the HIV epidemic when everyone was dying, and here you are now. What do you think when you look back at where we’ve come and where we are, but we still fight this stigma that still persists on a daily basis?
JOE
It’s sad, because that is so true. The stigma is still out there. People are uneducated still. It became a pandemic, AIDS, and it’s everywhere now, and the education isn’t everywhere. So it’s sad, because I’m seeing, in other countries and everything, the same thing that I had to go through as I was growing up here in the United States, and they’re going through it now. And then when you look back here in the United States, it’s still happening here, it’s just not talked about as much. So you are having people who are newly being diagnosed, and they’re scared to tell because they don’t wanna be shunned by their family, they don’t know what their reaction’s gonna be, and it’s crazy, because the education and the awareness and everything is out there, it’s at your fingertips in your phone, on your computer and everywhere, so it’s sad that people still feel that way. So that’s what I’m trying to do is to let them know that people are there for you. I already fought this fight, and people are gonna be there for you. The people who are not gonna be there for you, they’re not meant to be in your life anyway, but you’re gonna have a stronger and a greater community who will be there for you.
KARL
Yeah, well, Joe, listen, from one person living and thriving with HIV to you, who is certainly doing just that, I wanna say thank you for fighting the fight, and also for being the strong-headed kid that said, I’m not gonna live in the shadows, because by doing that, you helped millions of people around the world, and continue to do so. Joe DiPaolo, thanks for joining me on “Plus Talk”, mate.
JOE
Oh, thank you so much, and thank you again for having me. It’s a pleasure.
KARL
And that’s gonna do it for this episode of “Plus Talk”. If you want more information about Joe DiPaolo, or even the fantastic camp he founded called TLC, Teens Living a Challenge, go to our website, pluslifemedia.com. And remember, you can always follow us @pluslifemedia across social media platforms. Until next time, be nice to one another, it doesn’t take much. We’ll see you soon.