Image: Naomi August
Under Obamacare, you can't be discriminated against by a healthcare company for having a pre-existing condition. This is unlikely to remain the case under the Trump administration, which has already started the process of repealing the ACA. We asked people with pre-existing conditions what they're thinking and feeling right now.
Katie, 22, New Jersey
Diagnosis: Psoriatic arthritis
What kind of condition do you have?
I have psoriatic arthritis, and I was correctly diagnosed in September 2015. Compared to other patients, I got lucky; it only took about seven months During that time I saw five others doctor who all gave me the wrong diagnosis, and the wrong medicine. I tried 11 different medications (shots, pills, injections) and all they did was make me throw up. I'm now on a medication that is not FDA approved for what I have, but works and doesn't make me sicker.Have you benefited from the ACA?
I'm a reporter so having a stable, steady job in one place forever is unrealistic. With the ACA, I knew I could move to a less liberal state, freelance, switch insurers, have flexibility in my life and career, and companies wouldn't be able to deny me coverage or charge me more just because I'm a disabled woman. It let me make the kinds of choices my able-bodied friends take for granted. I'm terrified when I turn 26 I'll become uninsurable but still have to take $80,000 in medications I can't pay for. I'm scared I won't be able to see my doctor, who is out of state and rather expensive. We have no idea what's next, and that scares the shit out of me.Teddy, 27, Illinois
Diagnoses: Torn ACL/Torn Menisci; Meniscal Derangement; Osteoarthritis
Did coverage improve or worsen for you under the ACA?
Overall, I'd say my coverage worsened. There have been a lot more requirements for submitting in-depth information, and my last surgery required insurance approval. Coverage got more costly under the ACA, as my deductible substantially increased in addition to a higher monthly premium. Also, the number of physical therapy visits covered by insurance was limited and dropped significantly.How about challenges to provisions ensuring insurance coverage and protections for people with pre-existing conditions?
It is really concerning for me. The majority of people who have experienced my surgery experience another serious surgery within four or five years. As my knee slowly declines and surgery gets closer to reality, I wonder if I'll even have coverage. Pre-existing conditions should be covered with a patient responsibility provision where the patient is required and supported to take proactive steps to maintaining a healthy life/behavioral choices.Alisha, 34, New Jersey
Diagnosis: Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)
How old were you when you were first diagnosed with your illness and what led up to it?
I was officially diagnosed in 2011 at 29. However, I began suffering symptoms—such as soreness in my lower back and legs, muscle fatigue, balance and coordination issues--in 2005. Early on, they were so slight, I was able to ignore them. After my doctor ordered an MRI and it came back clear, I assumed it was stress, since I had just began working my first full time, post-collegiate job. In 2007, I began working out three times a week and experienced an upswing. But I noticed that even then, occasionally it would be extremely difficult for me to go up and down stairs without concentrating.In 2009, as a newlywed, things began to unravel quite rapidly. My legs hurt so bad constantly, and my back felt like fire. I felt majorly unstable, and began wearing flats and sneakers as much as possible. I went to over 25 doctors trying to figure what was wrong with me. The doctors could tell me what it wasn't—Parkinson's, ALS, MS, Hashimoto's, Myasthenia Gravis, Crohn's, Celiac, cancer—but not what it was. I was eventually given tests, extensive blood panels and a sural nerve biopsy and was diagnosed with neuropathy with demyelination of my peripheral nerves.What has helped you the most in managing your illness?
In May 2016, I had a Hematopoietic Stem Cell Transplant at Northwestern Memorial Hospital in Chicago. My private insurance refused to pay for the procedure they classified as "experimental" and referred me to try taking chemotherapy longterm instead. However, after winning a two-and-a-half year battle for Social Security Disability, I was able to enroll in Medicare, which covered most of the cost of the procedure, which is in the final stages of FDA approval. I also take a handful of medications lessen the nerve pain, aid in nerve regeneration and to prevent illness due to my new immune system.I also manage my illness with prayer. I pray and cry and listen to 90s hip hop. Because the dream of the 90s is also alive in my head.Considering these challenges, what other concerns do you have when it comes to insurance coverage?
I'm afraid with a repeal of the ACA I may one day find myself uninsurable. Without a replacement that maintains the "No denials because of pre-existing conditions." I am nothing more than a costly liability. Even assurances that as long as people maintain continual coverage, they won't be penalized, do little to assuage me. Without the ACA's protection, the company could potentially make the case that I had a "lapse of coverage" and are under no obligation to re-enroll me with my pre-existing conditions. Or, they could offer a substantially higher cost plan with lesser coverage.Kelley, 27, Ohio
Diagnoses: Postural Orthostatic Tachycardia Syndrome; Peripheral neuropathy
Have you always had problems with your health?
I was always pretty healthy when I was younger and didn't start noticing symptoms until they really began to impact my life when I was in my late teens. Looking back, though, I'm able to see symptoms were there a lot earlier than that. I first suspected something was wrong when I began fainting at work. Each time I would go to the emergency room, but they couldn't find anything wrong with me. I was sent to a cardiologist and eventually a neurologist and was misdiagnosed several times before finally going to the Cleveland Clinic about a year and a half ago. It took around nine years to get diagnosed with everything so far, though my doctors think I have an autoimmune disorder as well. I used to be incredibly active and athletic, but since my conditions have gotten worse, I can barely even take walks some days without being in too much pain or getting dizzy.Any wishes when it comes to the incoming presidential administration in terms of health policy?
I'm very upset about the proposals to repeal the Affordable Care Act. The ACA is the only reason that I'm able to afford my medications, testing, hospital visits, and other health costs. If it gets repealed, I won't be able to afford insurance costs. My life isn't perfect now by any means, but it will be a lot worse without my medications.Steve, 35, Kansas
Diagnoses: Degenerative Disc Disease; Herniated Discs; Spinal Stenosis
Have you had any success with certain treatments to alleviate the pain?
I have tried many different avenues over the past few years to get out of pain. I have tried several chiropractors, and I have gone through several bouts of physical therapy. I have had five epidural shots total on my back, and I had a surgery two years ago to try to relieve the issue. Nothing so far has helped it, but I try really hard to be optimistic. The battle with pain killers can sometimes be just as bad as the initial issue. There is a huge troubling problem in this country with pain meds, but it only makes it tougher on the men and women like me that really do have pain issues.What is your reaction to the recent Congressional votes to repeal the ACA—do you believe such a repeal have an impact on your coverage?
It scares me a lot to see where this huge healthcare political mess is headed and what it could mean for me and my medical future. Do I lose out on treatments in the future? Do I lose out to meds? It's kind of a dark time, because we don't know what is going to happen.
Diagnosis: Psoriatic arthritis
I have psoriatic arthritis, and I was correctly diagnosed in September 2015. Compared to other patients, I got lucky; it only took about seven months During that time I saw five others doctor who all gave me the wrong diagnosis, and the wrong medicine. I tried 11 different medications (shots, pills, injections) and all they did was make me throw up. I'm now on a medication that is not FDA approved for what I have, but works and doesn't make me sicker.
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I'm a reporter so having a stable, steady job in one place forever is unrealistic. With the ACA, I knew I could move to a less liberal state, freelance, switch insurers, have flexibility in my life and career, and companies wouldn't be able to deny me coverage or charge me more just because I'm a disabled woman. It let me make the kinds of choices my able-bodied friends take for granted. I'm terrified when I turn 26 I'll become uninsurable but still have to take $80,000 in medications I can't pay for. I'm scared I won't be able to see my doctor, who is out of state and rather expensive. We have no idea what's next, and that scares the shit out of me.Teddy, 27, Illinois
Diagnoses: Torn ACL/Torn Menisci; Meniscal Derangement; Osteoarthritis
Overall, I'd say my coverage worsened. There have been a lot more requirements for submitting in-depth information, and my last surgery required insurance approval. Coverage got more costly under the ACA, as my deductible substantially increased in addition to a higher monthly premium. Also, the number of physical therapy visits covered by insurance was limited and dropped significantly.How about challenges to provisions ensuring insurance coverage and protections for people with pre-existing conditions?
It is really concerning for me. The majority of people who have experienced my surgery experience another serious surgery within four or five years. As my knee slowly declines and surgery gets closer to reality, I wonder if I'll even have coverage. Pre-existing conditions should be covered with a patient responsibility provision where the patient is required and supported to take proactive steps to maintaining a healthy life/behavioral choices.
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Diagnosis: Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)
I was officially diagnosed in 2011 at 29. However, I began suffering symptoms—such as soreness in my lower back and legs, muscle fatigue, balance and coordination issues--in 2005. Early on, they were so slight, I was able to ignore them. After my doctor ordered an MRI and it came back clear, I assumed it was stress, since I had just began working my first full time, post-collegiate job. In 2007, I began working out three times a week and experienced an upswing. But I noticed that even then, occasionally it would be extremely difficult for me to go up and down stairs without concentrating.In 2009, as a newlywed, things began to unravel quite rapidly. My legs hurt so bad constantly, and my back felt like fire. I felt majorly unstable, and began wearing flats and sneakers as much as possible. I went to over 25 doctors trying to figure what was wrong with me. The doctors could tell me what it wasn't—Parkinson's, ALS, MS, Hashimoto's, Myasthenia Gravis, Crohn's, Celiac, cancer—but not what it was. I was eventually given tests, extensive blood panels and a sural nerve biopsy and was diagnosed with neuropathy with demyelination of my peripheral nerves.What has helped you the most in managing your illness?
In May 2016, I had a Hematopoietic Stem Cell Transplant at Northwestern Memorial Hospital in Chicago. My private insurance refused to pay for the procedure they classified as "experimental" and referred me to try taking chemotherapy longterm instead. However, after winning a two-and-a-half year battle for Social Security Disability, I was able to enroll in Medicare, which covered most of the cost of the procedure, which is in the final stages of FDA approval. I also take a handful of medications lessen the nerve pain, aid in nerve regeneration and to prevent illness due to my new immune system.
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I'm afraid with a repeal of the ACA I may one day find myself uninsurable. Without a replacement that maintains the "No denials because of pre-existing conditions." I am nothing more than a costly liability. Even assurances that as long as people maintain continual coverage, they won't be penalized, do little to assuage me. Without the ACA's protection, the company could potentially make the case that I had a "lapse of coverage" and are under no obligation to re-enroll me with my pre-existing conditions. Or, they could offer a substantially higher cost plan with lesser coverage.Kelley, 27, Ohio
Diagnoses: Postural Orthostatic Tachycardia Syndrome; Peripheral neuropathy
I was always pretty healthy when I was younger and didn't start noticing symptoms until they really began to impact my life when I was in my late teens. Looking back, though, I'm able to see symptoms were there a lot earlier than that. I first suspected something was wrong when I began fainting at work. Each time I would go to the emergency room, but they couldn't find anything wrong with me. I was sent to a cardiologist and eventually a neurologist and was misdiagnosed several times before finally going to the Cleveland Clinic about a year and a half ago. It took around nine years to get diagnosed with everything so far, though my doctors think I have an autoimmune disorder as well. I used to be incredibly active and athletic, but since my conditions have gotten worse, I can barely even take walks some days without being in too much pain or getting dizzy.
Advertisement
I'm very upset about the proposals to repeal the Affordable Care Act. The ACA is the only reason that I'm able to afford my medications, testing, hospital visits, and other health costs. If it gets repealed, I won't be able to afford insurance costs. My life isn't perfect now by any means, but it will be a lot worse without my medications.Steve, 35, Kansas
Diagnoses: Degenerative Disc Disease; Herniated Discs; Spinal Stenosis
I have tried many different avenues over the past few years to get out of pain. I have tried several chiropractors, and I have gone through several bouts of physical therapy. I have had five epidural shots total on my back, and I had a surgery two years ago to try to relieve the issue. Nothing so far has helped it, but I try really hard to be optimistic. The battle with pain killers can sometimes be just as bad as the initial issue. There is a huge troubling problem in this country with pain meds, but it only makes it tougher on the men and women like me that really do have pain issues.What is your reaction to the recent Congressional votes to repeal the ACA—do you believe such a repeal have an impact on your coverage?
It scares me a lot to see where this huge healthcare political mess is headed and what it could mean for me and my medical future. Do I lose out on treatments in the future? Do I lose out to meds? It's kind of a dark time, because we don't know what is going to happen.