Join Joel Sloan, who suffers from advanced heart failure at the age of 43, & Brenda Gazzar as they delve into the disturbing details of his extraordinary fight to get a heart transplant despite his HIV status and enlarged aorta.
Heartless Denial: HIV Discrimination & Organ Transplants
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Welcome to Code WACK!, your podcast on America’s broken healthcare system and how Medicare for All could help. I’m your host, Brenda Gazzar.
What obstacles do some Americans face when trying to get a new heart? Could someone’s HIV status affect whether their insurance covers the cost of a lifesaving organ transplant? Joel Sloan was forced to move back to Southern California in a bid to stay alive after he could not get a heart transplant in Oregon. Joel and I grew up in the desert town of Barstow, best known as a pit stop between L.A. and Vegas. His mother, Pattie, was one of my all-time favorite teachers at Barstow High School.
Welcome to Code WACK!, Joel.
Q: Tell us a bit about yourself. How old are you and where do you usually live?
Sloan: My name is Joel Sloan and I am 43 years old, just turned in June, and I was living in Palm Springs in Southern California, Los Angeles, and then moved to Oregon in September and because of COVID, I lost my job. I did guest services for a rental agency and then with COVID, we had to drop everything and so I went to Oregon to find work, and then in February, I was diagnosed.
Q: And what were you diagnosed with?
I was diagnosed with advanced heart failure with cardiomyopathy and cardio arrhythmia. Basically my right ventricle is 18 centimeters and my aortic valve is 21 centimeters and I have aneurysms between my left and right ventricle and at the opening of my aorta, and so I have to have a heart transplant basically.
Q: Wow. How did you find out that you had a heart issue?
Sloan: Back in 2015 I was living in Northern California, I was living in Sonoma County, and I was working as a server, and I had noticed I was getting fatigued and I thought I was just getting older and out of shape. I was only 36 at the time, but I couldn’t explain it. I wasn’t working out. I wasn’t doing, things that I normally do because I was just so busy with work. I started getting depressed and started having GI problems. I find out now that those are all kinds of undiagnosed heart failure issues because I moved to Palm Springs, and then I just couldn’t hold down work, I would get a job and I would just be out of breath, exhausted, and all my doctors none of them ever tested for my heart. You know I was having a lot of GI problems, and so they always chalked it up to just GI problems and so, when I moved to Oregon, I got a job working for a contractor for Restoration Hardware and we were replacing chandeliers.
And one day, I was carrying a ladder up the stairs, and I couldn’t get up the stairs. I was so out of breath. I was white as a ghost and we were wearing masks because it was full COVID at that time and we were going into people’s homes, and so I ripped off my mask, and the guy I was with was like are you okay and you know, I don’t think I’m okay. and at the time I thought I had COVID and I was living with my parents, and so I was for sure that I had killed my parents and you know I was just a mess. I was like oh my god I need to go to an emergency room STAT, and so we got done with that job, and then I went to the emergency room. They hooked me up to an EKG. They did a rapid COVID test and they said you don’t have COVID, but we’re admitting you in the cardiac ICU right now because you have heart failure at the time they thought and then it turned out it was advanced heart failure.
Q: And when was this that that happened?
Sloan: That was February 14 of this year, 2021.
Q: So what are some of the hurdles that you’ve faced in trying to get a new heart?
Sloan: I am HIV-positive, I was diagnosed with HIV in 2006 and I’m totally healthy. I have an undetectable viral load, and I have, you know, a good amount of T cells, and I take my meds every day. One of the hurdles that initially we knew was going to be a problem at (Oregon Health State University hospital) because that’s where I was being seen by Dr. Conrad Macon at OHSU.
Q: That’s Oregon Health State University, which has two hospitals.
Sloan: Initially he had told me that they had never done a heart transplant on someone living with HIV at OHSU because they’re a very new program. They only do about 10 heart transplants a year as in comparison to UCLA or Cedars Sinai that are doing like 160 to date this year alone in 2021 — and that’s during COVID, and so that was going to be the initial hurdle but he said you know we can get through it. We can handle it. I’m sure we can handle it.
Another hurdle I had was growing up in Barstow, I went the opposite way of a lot of people and you know we lived in a small town and I did drugs. And so because of my drug past, it was a long, long time ago, but that is also a consideration that they have for giving you a heart. But he said that wouldn’t be an issue with me at OHSU just because he knew me and saw me and you know, I didn’t test positive for any drugs or anything.
Another issue I have that complicates my case is my enlarged aorta, so they’ll have to replace my aortic valve as well and so that lengthens the time of surgery. It just makes things a little more complicated when they’re operating.
Q: Now, tell me about the health insurance that you have and what role your health insurance has played in some of these hurdles.
Sloan: Well, moving to Oregon, I had Medi-Cal, right, so I had to get off Medi-Cal and then I started seeing an HIV doctor in Portland. This is before the heart stuff, and the smartest thing I ever did was get on Oregon Health Plan there.
Q: That’s Oregon’s Medicaid program.
Sloan: So, I got on Oregon Health Plan and everything was going great, and then my heart stuff happened, and I was in the hospital for three weeks, initially, and they covered everything, all the tests, and then I got a full genetic panel done because they also wanted to see if this was possibly genetic, this heart failure, because often times it runs in the family and my grandmother did die of heart failure, her brother died of heart failure and her father died of heart failure. So in my genetic panel they found out that I do have the markers for heart failure in my family tree, but my insurance wouldn’t cover it. The Oregon Health Plan would not cover that, which I found kind of weird, and I was wondering why that would be.
Then it came time for the work up for the heart transplant and I got voted no on at OHSU but come to find out through working with a nurse, and working with the actual Oregon Health Plan because Oregon Health Plan is the umbrella, right, and then there’s an insurance company that covers me under that umbrella, but ultimately Oregon Health Plan is covering everything right and so they denied me the heart transplant and I was wondering why that was because when I started getting shopped to different programs like UCLA and Cedars Sinai, the woman that I spoke with at UCLA said if they outsource their transplant insurance, the transplant insurance portion, if they outsource that, then we’ll accept you because they don’t accept out of state Medicaid, which was my hurdle in coming to California.
I called Oregon Health Plan, and was put on hold, and then, you know, I mean I’ve spent probably a lifetime on hold in the past six months, especially in the past three months when it’s gotten really to the nitty gritty, and so I finally was able to talk to the manager at Oregon Health Plan, and speak with a nurse they assigned me a case manager and they informed me that Oregon Health Plan would never cover a heart transplant for someone living with HIV, and that was even if I was in state. They would never cover it. So, even if OHSU had said yes, the insurance would not be there to pay for it, and so I was pretty shocked to learn that and the reason that OHSU voted no, was because of my HIV status, first of all, and because of my enlarged aorta, and that was back in July.
I was pretty shocked to learn that the Oregon Health Plan would not cover someone with HIV and I’ve researched it and researched it and that’s just their bylaws. That’s what they have in their bylaws. Medi-Cal does not have that. So in coming to California, I’ve had to cancel my Oregon Health Plan, and then get on Medi-Cal, which is impossible, near impossible. It’s really difficult.
Q: So how do you feel that we live in a country where these kinds of things happen?
Sloan: I’m absolutely shocked that me being HIV-positive affects deciding whether I get to live or not, you know. It’s very, very disheartening to think that my value of life is less than because of something that wasn’t in my control. You know I, it wasn’t like I was willy nilly going around practicing unsafe sex or anything and like asked for HIV. It was, you know, a pretty traumatic experience of what occurred and so, to learn on top of that, that they’re valuing lives based on something that I can be totally… I can live to be 90, 100 with HIV you know with my meds and everything, and for them to say that I’m less than, less of a person because of that status is very, very disheartening.
Thank you, Joel Sloan. Joel finally got on Medi-Cal, and as of late August, was still waiting to hear whether UCLA will do a heart transplant for him. We’ll discuss more of his story in the next episode. You can also follow his progress at a GoFundMe page set up by his brother called “Help Joel on His Journey to Get a New Heart.”
Find more Code WACK! episodes on ProgressiveVoices.com and on the PV App. You can also subscribe to Code WACK! wherever you find your podcasts. This podcast is powered by HEAL California, uplifting the voices of those fighting for health care reform around the country. I’m Brenda Gazzar.
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