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Pre-Existing Faces and stories of those with pre-existing conditions presented by artists for action chicago

This Pre-Existing series shares the faces and stories of those with pre-existing conditions. Pre-existing conditions are not just a black and white list of what healthcare plans would rather not cover. They are the conditions of your friends, family, neighbors, and co-workers. There continues to be harmful rhetoric that "people who lead good lives" don't have pre-existing conditions. In reality, pre-existing conditions come in all shapes and sizes. Many are born with them through hereditary conditions. Many are diagnosed as children. We put this series together as we believe that those with PEC have a right to affordable health care. We thank those that have graciously shared their stories with us.

This is an ongoing project. If you are in the Chicago area, have a pre-existing condition, and would like to be a part of this project, please send an e-mail to Michael/Nelson at artistsforactionchicago@gmail.com.

This photo series is brought to you by Artists for Action Chicago. We are a group of Chicago area artists that stand for progressive values that advance humanity and protect the environment. Our intention is to use our art to witness, communicate, and advocate on issues of social justice. Please visit us at facebook.com/artistsforactionchicago.

"My pre-existing conditions include epilepsy, multiple sclerosis, and learning disabilities.

These disabilities have made it hard for me to have health insurance. If I hadn’t been a student, I don't think I'd have any insurance. It's really expensive to get health insurance. I think they know about my condition. If I were unable to have health insurance, it would kill me. I would no longer be living in this world.

We were behind in equal access to healthcare as compared to non-disability people in the past. And now, the government is making it harder for us to get equal access to get health care. I just don’t know why they want to do this to our citizens. Everyone should have same equal access to everything, include health care.

I feel like they don’t care about our lives, or who we are. Here is I want to say --- 'nothing about us with out us.'" -- Grace

"I was born with a few pre-existing conditions, including hip dysplasia and clubbed feet. As a baby, my clubbed feet were surgically straightened. My hips, however, were left untouched and led to years of follow-up appointments and monitoring.

While my parents had health insurance, they still were directed to Shriners Hospital because, at that time, the services from Shriners were free for children with orthopaedic conditions. Every year while growing up, my parents and I traveled three hours one way to Lexington for annual check-ups and consultation; through these check-ups, the doctors eventually diagnosed me with minor scoliosis, another addition to my growing list of “pre-existing conditions”. When I turned 18, though, I aged out of the system without much medical intervention. To complete a surgery on my hips as a child and as a teenager was too risky; the doctors from Shriners recommended that I should wait until I was an adult for total hip replacements.

As a college student, I was fortunate to stay on my parents’ health insurance thanks to my dad’s job with FedEx, a job that was specifically chosen to access benefits such as health insurance, even though it did not fit his career. The passage of the Affordable Care Act (ACA) ensured I could keep that health insurance until I turned 26. Having that possibility was an incredible relief for my family, as when I was aging out of Shriners, we were worried about the future of my access to healthcare. This anxiety especially increased as arthritis developed in my hips and worsened while in college. Each year I came closer my 26th birthday, the more urgent the financial reality felt. Under my dad’s health insurance, I had guaranteed access to receive the, at minimum, two surgeries I needed. But physically, my body did not yet need that, and doctors discouraged it.

Furthermore, under this insurance, I was able to benefit from physical therapy, which was absolutely crucial in preventing surgery. Nonetheless, even with my dad’s health insurance, my most recent round of physical therapy sessions, services I used sporadically over the span of two months, took my family two years to pay off. Even with “good” healthcare coverage, I no longer pursued physical therapy because of its cost.

Currently as a PhD student at the University of Illinois at Chicago (UIC), I have affordable healthcare coverage through the school’s health insurance. While affordable, this coverage is limited to the use of UIC medical facilities, which limits my ability to access healthcare in a variety of ways. Most importantly, like many UIC students, I live off-campus. If I had a health emergency while away from campus and needed to go to the ER elsewhere, I would be at risk of great financial burden. Additionally, I worry when I travel outside of Chicago because of the potential costs of emergency services away from UIC. When I am visiting my parents or take vacations out of state, we always have that unfortunate concern about what would happen if any misfortune occurred sitting in the back of our minds.

Furthermore, while total hip replacements (THR) are standard procedure in most cases, my hip dysplasia complicates the standard THR procedure; I need access to orthopaedic surgeons outside of the UIC network because of their experience with my specific condition and needs. A surgeon without this expertise could potentially leave me in chronic pain for the rest of my life, and yet the costs of such a surgery outside of UIC under my current coverage would not be feasible for me to cover. Indeed, the school’s insurance guarantees good service on campus, but not off.

On top of having hip dysplasia, I have other pre-existing conditions that need to be managed through access to medicine and doctors, conditions that health insurance companies would adore not supporting given the opportunity. I won’t be a graduate student forever, and so I won’t always have access to my current, affordable, even if limited, health insurance.

That reality brings anxiety and uncertainty into my life, as well as a list of never ending questions. What happens after I complete my degree and still need health insurance that may not be guaranteed by a job? Worse, what happens if the ACA is repealed, and pre-existing conditions are no longer protected, even if I do have access to health insurance through a job? Would I be able to afford health insurance? Would I even be covered? These questions constantly sit in my mind in ways that so many others my age, and even people older than me, do not face. Yet regardless of who you are, no one should be questioning whether they will have the coverage they need just to take care of their own health." -- Nell

"I was diagnosed with Crohn’s Disease a few days after turning 18, long before things like insurance premiums and prescription drug costs were part of my consciousness. Now, as I approach my 26th birthday, I control my disease with an IV medication that costs over $25,000 per month without insurance. I’ve been lucky enough to be on my dad’s insurance, and in February I will switch over to an awesome plan offered by my employer. But there isn’t a day that does by that I don’t stress about what this disease has done to me financially. I worry about what being between jobs would mean for my coverage.

I worry about what happens if the GOP gets their way and allows insurance companies to reinstitute lifetime caps –– at $25k+ per month, I would hit mine pretty quickly. We live in a world where a medical diagnosis can mean going bankrupt trying to stay healthy. I’d be lying if I said the whole system doesn’t make me very resentful –– I didn’t ask for this disease, and in addition to worrying about my often debilitating physical symptoms, I have to worry about calling my congresspeople every six weeks to beg them to let me keep my coverage and my financial security. I’m a bright, talented 25-year-old woman who is thriving professionally in spite of my health. Don’t I deserve as much of a shot as a healthy person at a prosperous life?" -- Samantha

“I was born with cerebral palsy. This condition is physical in nature and affects all four of my limbs, mainly my legs. I use both a powered and manual wheel chair. Growing up I was covered by my parents' health insurance until 14 years old.

When I was 14, I became independent of my parents' health insurance and taxes so I could qualify to receive social security benefits. My health care went through Medicaid managed care. This coverage continued until I was working full time and had employer health insurance. However, at one point I was laid off from my job at the City of Chicago. Then, I was covered by Cobra for about ten months.

After Cobra ended, I did not have health insurance for almost three years. It took me a while to get back on Medicaid insurance. Before the ACA, Illinois had a little known program called XPT for pre-existing conditions. I was 42 at the time. It was kind of like the federal CHIP program.

When the ACA was passed, I could not get insurance directly but had to re-apply through Medicaid. In addition the ACA did not cover my wheel chair. While I did get insurance through Medicaid, it is difficult to get them to pay for my power wheel chair or for the repairs for the chair.

Now, I have two part-time jobs, but they do not directly pay for health insurance. Long term care services like home care are only available if you have Medicaid and have no assets. So, I still use Medicaid.” -- Susan

"I was diagnosed with obstructive sleep apnea in 2001. My treatment was to use a CPAP (Continuous Positive Air Pressure) machine with a mask every time I slept. The insurance I had at the time covered most of the sleep study done for diagnosis as well as the CPAP machine. After that, my insurance would not pay for a new mask or other related pieces.

The following fall, my wife and I decided to look for less expensive private insurance. We were self-employed, so we had to find and pay full price of our health insurance. We had a $5,000 deductible and a monthly premium of about $1,200. Because the apnea was a preexisting health issue, we could not get another policy with any insurance company that did not include a rider stating they would not cover anything related to apnea. We felt that was too big a risk to take. There are many complications that can come from untreated apnea. Ironically, I was using the treatment, so I was a far lower risk, yet I was being penalized by insurers.

Every year after that, we looked for an insurance carrier who would cover us without an apnea rider, but we could not find one. Instead, we stayed with our original plan because it had to continue to cover my apnea and any related issues.

The changing of insurance carriers became a catch-22. If we stayed with our existing insurance, the company had to cover me – including apnea-related issues. It also meant the company could raise our premiums every year at will (and they did). If we left that insurance company, we could get lower premiums, but anything the insurer decided was caused or related to apnea would not be covered.

Our premiums went up each year between 10% and 20%. We were paying over $2,000 a month by the time the ACA (Affordable Care Act) came along. The ACA allowed us to get new insurance and not be held hostage by my preexisting condition." -- Ted

"My migraines have been a part of me for as long as I can remember. Long enough to be checked off as a pre-existing condition. Before I got my medication straightened out, I was having migraines which could go on for weeks at a time. When I enrolled for the Affordable Healthcare Act, I was 20 years old. My previous health insurance under my mom didn't make the distance when I made the move to Chicago from Michigan for undergrad. Prior to the ACA, each time I had to get my migraine meds adjusted (which was often during my college days), I would have to take a seven hour train ride back home on a weekend that worked best for my doctor's schedule. There was a lot of waiting and a lot of days spent in in total darkness in bed missing class. The stress of missing a class would lead to another worse migraine. When I knew I was covered, life was a little more comfortable. I knew I could go to the hospital if the migraine got out of control. I knew I could afford my daily medication. Without health insurance coverage, everything is unknown. With my health on the line depending on luck is neither comforting or realistic!" -- Katherine

“I was born with cerebral palsy. As a child I was covered by my parents’ insurance, which was pretty good. My chair was covered and my therapy was covered.

When I became 26, health insurance changed and became very expensive. I was on Medicaid earlier and just got back on Medicaid now. Since I’ve never been employed full time, I never had employer’s health insurance. As a part-time worker, I was never covered.

When the Affordable Care Act was passed, it made my health insurance cheaper.

Starting next month, I will have Medicaid again. Last November I applied to Medicaid again. In May I was told I wasn’t covered and wouldn’t be receiving health insurance. Then, in August, they said I would be covered. It’s been very difficult to get Medicaid. It’s been a real pain to get covered. Make up your mind!

If they took away the pre-existing requirement, I would think my insurance premiums would go up.” -- Ryan

"It started with an appendectomy in July of 2002. I was in graduate school and running beyond full speed ahead. After taking a few weeks off to recover from surgery I was back at school and in the lab but something was wrong. I was tired, I hurt from head to toe; I couldn’t sleep. Brain fog made it hard to think, the swelling in my joints made typing and lab work excruciating. Then the fevers started, then a rash, then a 50-pound weight loss. Trips to the doctor were answered with; ‘You are working too hard” “You are stressed out” “You might be pregnant, have mono, be anorexic” “It is all in your head”

I was lucky. I was on COBRA from my previous job and the insurance coverage was excellent. I could keep going back to the doctor and fight for answers as to why I was sick. In December, I got my answer, Rheumatoid Arthritis. Three weeks after my diagnosis, the COBRA expired and I was uninsurable. The student health insurance even said no. This was long before ACA and there were very few options for me. The state I was in had a High Risk insurance pool that would take me but the price was very high and I had to use student loans to cover the premiums. I was just happy to find something and get back to adjusting to my new life with a chronic illness.

15 years later, I have a good job and health coverage so when the bad days outnumber the good ones I can seek treatment. I used to worry about losing my job and my health coverage, but I was comforted in knowing I would not be denied coverage again. Now I worry about life without ACA. I worry about having a good job but living paycheck to paycheck to pay for my medications. I worry about having major surgery and loosing coverage for the rest of the year or for life.

Worrying does not enact change. Staying informed, voting, advocating enacts change. In the meantime, if today is a good day you can find me at a park taking pictures of wonderful things." -- Sherry

“I was diagnosed with Type 1 (insulin dependent) Diabetes at 8 years old, nearly 32 years ago now. As a diabetic, I have faced being without insurance twice now in my life. The first time I barely survived for two years before the Affordable Care Act granted me insurance, after having to work with my doctors to keep insulin flowing, several desperate emergency department visits, and foregoing many medications that simply were impossible to maintain, but slowly deteriorated my health. The second time, Medicaid thankfully kicked in shortly before an accident that eventually led to an amputation below the knee on my left leg. The process of dealing with a bone infection, complicated by my diabetes, led to nearly a dozen surgeries and nine hospital stays that in just a single year would have cost well over a million dollars if I had to pay out of pocket. I am alive today only because of my continued enrollment on Medicaid. -- David

"They told me not to care, and I cared too much. I have a pre-existing condition called bipolar illness. I’ve had symptoms since I was 9 years old. I am a 65+ Chicagoan and live with my aging cats, Sandusty and Treasure. Often, I cannot filter out sadness and despair from my outside world. Sometimes, my thoughts speed me into excitement that lead me steps ahead of my people, and sometimes into an oblivion that only sleeplessness can generate. The illness shapes my life, yet does not define me. I am much more complex. We folks with pre-existing conditions are intricate.

My early struggles with depression first caused me insurance trouble in my early twenties when I had an appendicitis attack that required surgery. I worked for a very small firm that offered me a wage and benefits, or so I thought. When hospital payment time for the insurance company landed, the insurance denied my coverage and canceled my policy due to my previous condition that they claimed was not reported to them. I had to find a job with a big employer who would provide me health insurance with no questions asked.

I still care too much, and these days I’m glad I have an overactive conscience. Still, there are the days I am like a delicate flower." -- Kathy

"I started a business to help people with health challenges find foods that fit their diet, but I couldn’t do it if I had to buy my own health insurance. I have type 1 diabetes and celiac disease, two pre-existing conditions that make purchasing medical coverage on the individual market nearly impossible. Fortunately, I can get coverage through my husband’s employer, which keeps me alive today, but this limits career options for both me and my husband. One of us has to work full-time for an employer to afford the medical care I need. I don’t consider myself “sick,” but because I have two autoimmune diseases—through sheer bad luck and factors I couldn’t control—insurance companies consider me a risk. I do everything it takes to stay in constant control of my health, and I want to help others like me through my business. Our health care system should help people with pre-existing conditions, not penalize them, because we have so much to offer." -- Debbie

“'Always keep the records.'

That’s what my mother has been telling me since I was 10 years old. The consequence of not keeping the records: paying a minimum of $30,000 per IVIG treatment from my own pocket. One regimen would typically be about three or four treatments and that was only for the medication itself. Add to those expenses the healthcare providers, outpatient fees and all the other little things that land on a medical bill (I was once charged for accidentally taking a pillow from the hospital). If you kept your records, it meant the insurance providers could never “get out” of providing the coverage the policy promised. They couldn’t use a loop hole. The insurance industry was always positioned as the villain in the narrative of managing my health.

I grew up with a condition known at the time as idiopathic thrombocytopenic purpura (ITP). It was a blood clotting disorder in which my body would not produce, or replenish, platelets as quickly as my body would need them to fight diseases. I was fortunate to not have some of the more fragile disorders like hemophilia but lived with the awareness of this looming threat since age 9. Managing the condition meant constant monitoring for signs of a low platelet count and a very close relationship with my hematologist. I visited him every week for a while. Then every other week. As I matured and learned to recognize signs of a low count myself, he trusted me to visit once a month. I knew this man better than most of my adult family members. He was an aging Jewish man, a brilliant physician, and a musical composer and lyricist. He was at my wedding.

It was he who recommended a splenectomy to help bring the fluctuations in my platelet count under greater control. In 1990, this was a major surgery and resulted in a collapsed lung, a second procedure to ensure none of my spleen was left behind (did you know they can regenerate) and 10 days in recovery in the hospital. Each day was a bag of steroids. At age 10, I remember the nurses giving me a teddy-bear because I had been there so long and reached medical bills in excess of one million dollars.

My parents were immigrants from the Caribbean. They became high school teachers in South Florida and were supporting up to five kids. Debt is something I’m familiar with and something I quickly understood could be amplified because of a condition that simply revealed itself in my DNA. Insurance wasn’t just about access to doctors. Insurance was about protecting the modest life we lived.

Our well-being rested on whether or not an insurance company could recognize my ITP as a pre-existing condition. My relationship with our insurance was one of constant worry and intense record keeping. If my parents switched insurance, they held on to the files. To this day, I can demonstrate a consistent timeline of insurance from 1989. Some kids grow up collecting the baseball cards and posters of their favorite athletes. With a pre-existing condition, I grew up collecting certificates of coverage.

When the ACA passed into law, I relaxed a bit. I didn’t need it. I had a good job with good insurance. But for the first time, I started to feel the weight of my mother’s advice lifting and my relationship with insurance changing. Maybe I didn’t need to be so vigilant I’d think.

Now that the ACA is under threat and the rules around pre-existing conditions may change, I’m not sure. But my mother, as usual, is always right. So I’ll be checking the filing cabinet to ensure those records, and my family’s way of life, will still be there for me. Always. Keep. The Records.” -- Kristian

"For as long as I can remember, I've been a complicated medical case. I was born three months premature and my first five months of life was spent in the hospital. I grew up generally health even though I did not hit some milestones in those early years. When I was ten years old, I was diagnosed with a hypothyroid condition called Hashimoto's disease but throughout the years my thyroid kept on growing. We finally got my thyroid taken out when I was eighteen years old. Apparently, when they took out my thyroid, it was a lot large then they expected, so I was told that I was the talk of the operating room. During my junior year of college, I was experiencing really bad headaches and I found out that I had a rare brain tumor on my cerebellum is known as dysplastic gangliocytoma or Lhermitte–Duclos disease (LDD). These past 3 years have been filled with one medical thing after another. Brain surgery to remove the tumor, genetic testing to see if I had another rare condition known as cowden. Then diagnosed with breast cancer and made the hard choice to have a double mastectomy with reconstruction at the age of 25. My mom fought really hard to make sure I had health insurance, even when the insurance company denied me three times just because I had multiple pre-existing medical conditions. Something I could not have prevented or changed in any way.

I will keep on fighting and I will not back down because I'm tired of being quiet and scared for my life. Especially when it comes to healthcare. I've been through way too much throughout my life to back down." -- Kaitlyn

“I was diagnosed in 2000 with hypertrophic cardiomyopathy (HCM), an inherited disorder that causes a progressive thickening of the heart muscle. Over time HCM will make my heart less efficient. It can also cause arrhythmias that can lead to sudden and fatal cardiac arrest. HCM is also expensive. I need to see a cardiologist annually and have regular followup tests. I also have an implanted defibrillator. That costs $25,000 for the device alone, and it does not last forever. The battery wears down after 5-7 years and it has to be surgically replaced (I’m currently on my third). My future likely includes daily medication and additional heart surgeries, maybe even a transplant. Fortunately, my workplace provides good insurance; but until the Affordable Care Act I lived in fear of losing my job and being unable to find another one – and losing coverage of my pre-existing condition as a result. The ACA’s elimination of lifetime caps also meant I could relax a bit about my financial future and hope to retire while I’m still reasonably healthy. Right now I know I make a good poster child for the “innocent/not her fault” ill person. But who assigns fault? People who smoke are already dinged heavily in the insurance market. Will insurance companies decide next that people like me are unworthy because we have a glass or two of wine in the evening? Because we eat dessert? Or perhaps someday simply because we have a gene that expresses as a complex, expensive illness? Everyone deserves access to affordable expert care and lifesaving treatment, without blaming and shaming. And everyone should be able to get that care – part-time workers, artists, musicians, entrepreneurs, whoever – without having to work a full-time institutionalized job just for the health insurance.” -- Maureen

"In my early 20’s, I was diagnosed with hereditary hemochromatosis, AKA iron overload disease. Basically, my body absorbs too much iron from the foods I eat. Although the disease can be fatal without treatment, it is very easy to treat and with treatment, the prognosis is excellent. I never really thought too much about it until I became self employed a few years after my diagnosis and went to buy an individual health insurance policy and was declined by every company I tried. I was shocked and scared that I might have to go without health insurance due to my pre-existing condition. I eventually found an option, but it was extremely expensive. The Affordable Care Act was life changing for me. I no longer had to worry about finding insurance and the cost was significantly lower.

These days, I am constantly stressed by the prospect of the ACA being repealed either without a replacement or with one that will not cover pre-existing conditions. I hate the thought of going back to worrying constantly about whether I will be able to get insurance and how much it will cost.

I am also an independent contractor. I have successfully run my own business for almost twenty years. If I had to, I would get a corporate job just to get coverage. How ridiculous is it that I would have to leave a job that I love and that I am very good at it so that I can make sure I have insurance? Having insurance plans primarily tied to corporate jobs is terrible for entrepreneurship, a key component of our economy. How many would-be entrepreneurs are there that are only working corporate jobs because they need the health care coverage for them and/or their family? Having a health care system that basically requires that you work for a large company shuns entrepreneurship, innovation, and taking risks.

The ACA isn't perfect. It needs some improvement. But let's work together to improve it rather than going back and taking away health insurance from millions." -- Holly

Credits:

Michael Kreuser and Nelson Armour

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