Featuring Joel Sloan, who suffers from advanced heart failure at the age of 43, discussing the toll America’s fragmented healthcare system has taken on him as he fights for the transplant he desperately needs to live.
Fighting for life in America’s healthcare rabbit hole
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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.
How does America’s dysfunctional healthcare system treat patients in need of organ transplants? What kind of financial and emotional toll does this take on them? Forty-three year old Joel Sloan was forced to move to Los Angeles in a bid to get a lifesaving heart transplant after he could not get one in Oregon. He’s been entangled in the health insurance maze for months while trying to get coverage for the transplant. How might his life be different if America had Medicare for All?
Welcome to Code WACK!, Joel.
Q: So you recently moved from Oregon to LA. Where are you now with getting a heart transplant?
Sloan: So since I’ve been in L.A., I’m using this address as my address but I’m staying in a hotel near UCLA. I’m very fortunate to have a friend that has the means to put me up in a hotel, so I’m staying in a hotel near UCLA just so in case anything happens I can be right there and go in, but I’ve been on the phone, I got here a week and a half ago and I’ll just show you quickly. So, this is my notes since the 22nd of July. I’m just going through and going through and going through and going through and speaking to everyone that I can and I’ve taken pages and pages and pages and pages of notes, and been on hold for hours on end, to try to get (his previous insurance) cancelled and get back on Medi-Cal which I officially got the call yesterday from the manager of the insurance department at UCLA that my Medi-Cal was accepted.
Yeah that’s great so now I’m just waiting for an appointment to do a workup and so what they’ll do is, everything that I’ve done in Oregon for the past five months, they’ll do in a week’s time here. They’ll give me the cardiac CT scans, the MRIs, you know, everything that I need to work up through the transplant and then they vote, I was a smoker as well and so I had to wait six months for a transplant anyways so Aug. 14 which is tomorrow is the official date that I could get a heart anyhow, and so the timing looks really good and everything looks really good and I’m just waiting for the call to do the workup, and then if they (UCLA) vote no, then we’re going to try Cedars-Sinai, and if Cedars-Sinai votes no then we’re going to take a break, and I’ll go and get the LVAD implanted in my chest.
Host: That’s a mechanical pump that’s implanted inside a person’s chest with heart failure.
Sloan: Because right now I have a pacemaker and defibrillator, and then we’ll do the LVAD and then we’ll try Stanford, Salt Lake City and Miami Dade. Those are three other programs that we’ll do this year, and see if I can get a heart.
Q: Wow, after you were turned down in Oregon for the transplant due to your enlarged aorta and HIV status, and you moved back to California, it seems like UCLA was your first choice. Why is that?
Sloan: Well my doctor chose UCLA because he knows the cardiologist there Jeff Hsu, Dr. Hsu, who is great and he trusts in my care. But my first choice was actually Cedars-Sinai because they’re number one in the country. But they are a private hospital so they accept only private insurance so there is a chance that Medi-Cal will outsource, if UCLA says no, that they’ll outsource the implant portion, the heart transplant portion of the insurance so I could get on at Cedars, but we’ll see what happens there.
Host: While Cedars-Sinai’s website says they do accept some Medi-Cal patients, it’s unclear if Joel would qualify.
Q: Wow. So what’s on your mind. What’s your biggest concern right now?
Sloan: That UCLA, that I get an appointment, that’s like kind of the big stress. It kind of sucks because, you know, I don’t want to be one of those people that is a pessimist and thinks you know like oh I’m going to die, because I don’t think that I know that I’m going to live, but it’s very, it’s troubling to think that I’ve had to spend all this time advocating for myself and, you know, on the phone and pushing and pushing and pushing and pushing and pushing because I have pushed a tremendous amount, and spent a lot of time when I could have been enjoying, if these are my last years, you know, enjoying it, you know, cuz I was given a terminal diagnosis of, you know, even with a new heart, it could be five years so it’s just annoying that you have to spend time working for insurance and working for someone to cover your heart transplant as opposed to enjoying life.
Q: So do you have any financial concerns? Is Medicaid going to cover everything?
Sloan: We’ll see. I don’t know. That’s the thing. Well my thought also was why don’t I just get a private insurance, you know, I said I’m just going to go and pay the 180 bucks a month for the deductible or whatever, you know, monthly, and get insurance, and I was talking to my dad about it, he goes, you know, there’s no way that private insurance is going to cover a heart transplant, son. You’ll be stuck with $800,000 worth of bills and I didn’t realize — that didn’t dawn on me at first. I don’t know why that didn’t dawn on me but it’s true. It’s like yeah, you can’t. There’s no way around this.
You know so Medi-Cal will hopefully pay for everything, but there are financial concerns because I was denied disability because they denied me federal disability because they say at the time of my diagnosis, I was not working, and so and I wasn’t working because, you know, because in 2015, I stopped working, and went on a year of California Disability and then I just couldn’t keep a job and so they’re saying that is a qualification for me to be disqualified for disability so in Oregon I qualify for SSI so I get $700 a month, — a month — for, you know, for the rest of my life, but I’ve moved to California and so that is now suspended so I have no income, the only income I have is $190 in food stamps.
So it’s a godsend, that my friend was able to pay for my hotel stuff, you know, but as far as living expenses and bills, they’re just going to collections and piling up. My parents pay my cell phone bill, and I was very fortunate to have my parents step up to the plate and they’ve paid for so much, you know they let me move in with him, and the whole time I was at OHSU, they drove me every day to my doctor’s appointments because I was going to the doctor four times a week and they live in Salem, so we’re traveling an hour and a half each way to go to the doctor, you know, and my parents are 73 years old retired and on a fixed income but they really really really are amazing people and you know, fed and clothed me and done everything. It’s amazing.
Host: Hmmm. God bless them.
Sloan: Yeah.
Q: Joel, what do you think of having a provider network that’s nationwide, like Medicare for All would offer, rather than a health plan that limits you to specific doctors, so that you have the freedom to choose your medical team based on expertise.
Sloan: I think that’s vitally important, I think that that’s one thing that this has taught me is due diligence and being my own best advocate is something that would benefit everyone, you know, as opposed to maybe just, I don’t want to say being stuck with a doctor because doctors all work hard, you know, but being stuck with someone that doesn’t actually have the knowledge that someone else has. It would benefit everyone greatly to be able to kind of do their own research and find a doctor that really fits them best, you know, I mean, with anything. I think with HIV, with cancer, you know, with heart failure, with any sort of thing. It’s all about who you’re comfortable with, and I was really fortunate to get Dr. Macon because he was absolutely amazing. He’s been very supportive. He calls me from his cell phone, you know, to check on me and it’s very, very great that I got hooked up with him.
Q: Right, that’s Dr. Conrad Macon, of Oregon Health State University. I’m so glad. What else do you want to tell me?
Sloan: Umm, I just think that my best friend and my ex, Christopher, he’s from Canada, you know, and he was sitting there and said you know it’s so weird to think that if, because we had planned on moving to Canada when Trump got elected and we didn’t, we stayed in California because we both were working, and doing things or whatever. And he goes, you know, to think that in Canada you wouldn’t be going through this right now. You would have quality of life, because they have a healthcare system, which is supposed to take care of all this for you. They do all the worrying, you know, and you’re not left out in the cold to fend for yourself and fight for your life, basically you know it’s literally and it sounds dramatic but it really really is, you know, a fight for, for life, and I think that, you know, if we did have health care for all, which people for many different reasons don’t think is great, and the health care system in this country is so wack to begin with, it would just be, a fresh start. I think is like necessary, you know?
Q: So what would that mean to you, if we had a single payer health care system, like Canada has?
Sloan: I would be riding horses right now on the phone, you know? I would be doing things that I absolutely love and enjoy. People that aren’t sick don’t get it. You know what I mean, and it’s all about dollars and cents, but once you get sick, and you have a family member that gets sick, and you realize the rabbit hole that is this healthcare system that we have right now is really, really, really in need of a complete overhaul and I just, I think that Health Care for All would eliminate that, what we have now, where it’s just basically about money. That’s what it seems like. You’re just a number, and they push you through and it’s really hard to get someone to see you as an individual, and an individual that’s going through something traumatic, and because they’re on the phone and they have a quota that they have to make. They’re just (makes sounds in quick succession) and it’s crazy for me to think like that.
Thank you, Joel Sloan.
As of late August, Joel had a workup appointment slated for mid-September at UCLA, and was still awaiting word on whether they’ll agree to do the transplant. To help with his extraordinary expenses, Joel’s brother Dale has set up a GoFundMe page for him 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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