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How I’ve Survived With Chronic Asthma and No Insurance

Rebekah W., Alachua County

I am 50 years old and have been living in Florida since 1994. Throughout most of my life, I’ve been either uninsured or underinsured. I have chronic asthma that requires daily medication, and that medication has just gotten harder and harder to afford over time. Even during the most recent time period when I had health insurance while I was working, the medication was still close to $200 to $300 a month. It was still more than my electric bill, and more than any other bill in my life, with the exception of maybe my mortgage at the time. It’s just hard.

I was laid off from my job at an events company in March 2020 due to the start of the COVID pandemic and I ended up losing my health insurance as a result. I haven’t had any insurance since then. To continue with the same insurance plan I had through my job, it would have cost me over $500 a month– and that’s just so I can breathe. Without an income, how is anybody supposed to do that?

I’ve looked into both Medicare and Medicaid. I don’t qualify for Medicare because I’m not old enough, and I don’t qualify for Medicaid because I don’t have children, and that seems to be a theme among most Florida systems. In Florida, either you earn too much in your part-time job, or you don’t qualify because you don’t have children. That is very frustrating because I never intended to have children and it’s a little offensive when people within the system tell me, “Well if you just had a kid, things would be easier for you.” That’s irresponsible. Why would anyone bring a life into this world just so they can get that kind of stuff? That doesn’t make any sense to me.

In the mid-2000s– I want to say between 2006 and 2010– I worked at the University of Florida and I was able to get insurance there. It was the only time in my entire life that my asthma medicine was at a price I could afford. Since that job ended, every year has been a struggle when it comes to accessing my asthma medication– without exception. There were a few years when I was unemployed and was going to the Health Department regularly to keep up with my asthma medicine. Despite having the Health Department as a resource, it was still hard to keep up with because there were all these obstacles involved in that process.

When I finally got a job with an events company and was able to get insurance again, I stopped going to the Health Department. Instead, I was going to a doctor within the UF system. I also enrolled in insurance at a point in time through the Marketplace around 2018 or 2019, but I ended up having a bad experience with that insurance. The insurance suddenly changed its rates on me and I was unable to afford the new rate. Despite being fully employed at the time and having an income, I still wasn’t making that much money that I could afford a monthly payment of $600. That’s why I ended up canceling it. When I canceled it, I was without coverage for 7 or 8 months before I was able to enroll with UnitedHealthcare. I was covered through that insurance plan for almost two years. Although I was receiving the coverage through my employer, it was still a pretty expensive plan. It cost me several hundred dollars a month to get my asthma medication or anything else I needed done. I haven’t had any insurance since getting laid off in March 2020, but I’m exploring what options are available through the Marketplace again. I just don’t know if I’ll qualify for anything.

Since getting laid off in 2020, I’ve worked on and off. After 7 months, I was able to go back to work for the events company for about 3 months before getting laid off again for another few months. Then they called me to go back in August 2021, but we worked for two weeks before everything shut down again. I was temporarily laid off again in September and the Florida unemployment system was cut off at that point. So then I went a whole month just trying to figure out how to make ends meet because I didn’t have any income and didn’t have anything left in my savings.

Since I’ve been trying so hard to make ends meet, I’m now working 3 jobs, and one of those is with the events company I was initially laid off from. I’m still struggling. I own my property, but my homeowner’s insurance and taxes are due, and I don’t have the money to pay them. I’ve been mostly unemployed for nearly two years. I know that I probably have something more than other people do because I have my own home and I haven’t lost it yet. However, if I don’t pay my taxes, I’m gonna lose it. That’s where I’m at right now. I’m working really hard trying to make what I don’t have saved, but next year is still uncertain. If we have another surge and events start to get canceled, there goes my job again at the events company. I should be starting a full-time schedule soon, but I just don’t have any guarantees of what’s going to happen after that.

I’ve ended up in the Emergency Room a few times in my life because of my asthma. I grew up in Louisiana and had to go to the E.R. throughout my childhood, but that was before my family fully understood how bad my asthma could be. My asthma has been a bit seasonal throughout my life, with some seasons being worse than others. There have been times when my asthma has been mild, and others when it has almost killed me. Since starting to live in Florida, I think I’ve ended up at the E.R. three times due to my asthma. The last time I went, the doctor was actually very angry with me and basically said I was “committing suicide” by not keeping up with my asthma medication. However, I explained to him that I couldn’t keep up with my medication at that point in time because I just couldn’t afford it. I understood where he was coming from because I’m fairly healthy, as long as I’m keeping up with my asthma. If I don’t keep up with my asthma, then I end up in the E.R. It’s either one or the other.

When it comes to my hospital bills from E.R. visits, I’ve been able to deal with some of my bills with the help of E.R. programs that cover you if you don’t have an income. However, there are other bills that I’ve had to pay myself, and I still probably owe some of them. It’s hard to keep up with payments, especially during periods of time when you don’t have an income. I’m working on it and I just have to keep moving forward. When I can get back to continuing those payments, I will.

Every year, I have to get my asthma prescriptions renewed. I went to my regular doctor’s office last summer and ended up seeing a new doctor there because the one I had been seeing for a few years moved to another state. Since I was uninsured, the visit already included a pretty high fee, and I barely had enough money to go see her because I was unemployed at the moment. Furthermore, because of my age, the doctor wanted to run several tests on me. However, there was no way I could afford the cost of all those tests. She ended up writing a prescription for just one inhaler, rather than giving me enough to last the year as it has usually happened for my entire life. She didn’t explain to me why she did it that way, but simply that she wanted to run a bunch of tests. It ended up taking her three weeks just to put my Advair prescription through. I was confused, a bit anxious, and even started to get into a little bit of a panic about it because I know what happens when I don’t have my medicine. The prescription finally went through when I sent the doctor an email that was probably not very friendly. However, she only put in a prescription for one inhaler.

Part of how I’ve survived the past few years is by using other peoples’ inhalers. They know I can’t afford it, so if their prescription changes or they know someone who isn’t using it anymore, they pass those inhalers on to me. Around mid-October of 2021, I came down with a terrible sinus infection that was causing me extreme pain. I looked online to try to figure out what I could do to avoid having to go to the E.R. Not only would I have had to figure out how to pay for the E.R. visit, but it would have taken hours and hours because of the COVID situation in hospitals at that moment. I Googled “free clinics in Gainesville” and the Equal Access Clinic was one of the options that came up.

Rather than being a mobile clinic like the ones I had encountered in the past, it was great to find that the Equal Access Clinic is held at the same place every week. The first doctor that saw me at the clinic put me on an antibiotic that was working, but it ran out before the infection was resolved. When I went back to try to get a continuation of that antibiotic, a new doctor started me on a different medication. However, that new medication didn’t work. A month passed and I still had the sinus infection. I really appreciate the Equal Access Clinic– I know it’s a good thing and that they’re doing their best– but consistency is hard to find there. If I had some consistency, I think maybe the situation might’ve been different. Anyway, the sinus infection was really bad for a while, but right now it’s just kind of annoying. It isn’t causing me extraordinary pain anymore. Now I’m just trying to figure out the next step.

Dealing with an infection and chronic asthma has been troubling, especially since it has been a struggle to acquire my asthma medication without insurance. Since I’m still alright at the moment with the amount of asthma medication I have left, I haven’t approached anyone at the Equal Access Clinic about this yet. In the meantime, I have found apps that are helpful for finding medications at an affordable price. GoodRx is one of the apps that works pretty well at doing this, but even then, the medication is still a couple hundred dollars. Even if I eventually get rid of my sinus infection, I’ll have to continue to face the struggle of getting my asthma medications because they’re so expensive.

When it comes to oral health and dental care, I actually haven’t seen a dentist in a very long time. It has probably been more than 20 years since I’ve been to a dentist. It’s been so long that I honestly don’t remember the last time I had my teeth cleaned. I actually had decently healthy teeth up until probably the last 8 or 10 years. I didn’t really have a lot of issues in my dental care, but now I am having some issues. I definitely have some cavities that I haven’t been able to treat. I broke my front tooth when I was a child, and it’s had a false back for the entirety of my life. That false back is wearing off, and I don’t know how I’m going to deal with that. When it does come all the way off, either I’m going to be in extreme pain, or my tooth is going to die.

Even when I’ve had health insurance through my employers, I still haven’t had any dental insurance. Most of my friends don’t have dental insurance either. Unless they work for UF, they can’t afford it. That being said, even with the insurance I had while working at UF, adding dental insurance was cost-prohibitive. When I looked into it, adding dental insurance to my plan would have added several hundred dollars to my monthly expenses, and all it covered was like two cleanings. It didn’t cover any sort of treatments. Treating my tooth that currently needs work done would have needed to come out of pocket, and that’s just not a realistic expense. I did ask about dental services when I was at the Equal Access Clinic last time. They apparently have dental resources, and I told them I would be interested in them. I haven’t heard anything from them yet so I don’t know how long that will take.

If Florida expanded Medicaid and I were to qualify for it, there are a few things in my life that would be different. For starters, I wouldn’t have to face the constant anxiety of whether or not I’m going to be able to breathe next month. I wouldn’t have to wonder what I’m going to do once my inhaler runs out. There are very few days when I don’t think about my asthma. It’s been part of my life since I was 10 years old and it’s just a constant source of anxiety for me. It’s not something I asked for. It doesn’t help that there are a lot of insurance companies that are prejudiced against chronic conditions. So that’s another thing I have to deal with. You hear people in the news always talking about how the price of insulin has gone up. Well, the price of asthma medicine has also gone up, but that’s not part of the news. One puff of an inhaler per day is all I need to live a relatively normal life, but it’s hard for me to have that safety net because it’s expensive— because of the money.


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