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The Chronic Gap in Healthcare

March 20, 2024
3 min read

I’d love for lawmakers to know that we need affordable healthcare options that cover those of us who are too healthy for disability but sometimes too sick to work. Living with a chronic illness can be a fulltime job in itself.

Past denial of medication coverage has greatly and frequently impacted my treatment decision. For close to 8 years I was taking Remicade with great success in keeping my UC in remission. However, the hoops I had to jump through every year to make sure that my insurance company would continue to cover my medication was a mess. I also felt a sense of anxiety that at any point my insurance would drop my coverage and I wouldn’t be able to afford the medication that I depended on to keep me alive. It was due to this anxiety/fear that I decided to try to treat my UC naturally, with extreme diet and lifestyle changes alone. When that didn’t work, I eventually ended up on medication again and I greatly resisted going back on another biologic because of the same fears I had from before. Eventually my disease progressed to the point where it was no longer an option and I had to go back on a biologic. It’s still a fight every year with the insurance company to continue covering my medication.
This was back in 2008 at a time way before #IBDwarrior and #ulcerativecolitis were so easily searchable on social media, I felt like I was fighting all alone. It was a lot to manage, and it felt extremely isolating. I didn’t know of anyone else who had this disease. When I googled Ulcerative Colitis at the time it said that mainly men over 50 and Jewish people were mostly diagnosed with this disease… I was neither of those, so I assumed that I was the only 20 year old young woman like me who had this disease. 
It wasn’t until a few years later that I had actually met someone in real life who also had UC (and he was a 60+ man). Only within the past 5 years have I connected with a community of others like me who have this disease. My first connection to a community was by way of a FB support group for UC.

Costly Battles

The biggest barriers that stood between me and receiving the treatment that worked best for me was the cost. While I’m now enrolled in a patient assistant program, my out of pocket costs for my medication is $0-$5. However, I always worried about my insurance dropping my coverage and being stuck with a 4 figure bill for my monthly medication costs.  It was due to that fear that I quit a treatment that was working really well for me just so I didn’t have to have the threat of insurance dropping me hanging over my head.  I also avoided getting back on an expensive biologic and got sicker and sicker in the meantime for those same reasons. If I didn’t worry about the insurance portion coverage my medication costs, I would probably still be on Remicade today because it worked so well for me. (I honestly could kick myself now for ever getting off of it)

Before and After life with Illness

I was 20 years old when I got diagnosed. And, like most 20 year olds, I thought I was invincible. I always had an overbooked work and social calendar with no days off. I never said no to any invitation or favor that was asked of me. I was used to running 100 miles an hour in a million different directions. I slept only 4-5 hours a night and my days were fueled by caffeine and sugar. That was my ‘normal’ before I became sick. The next few years were a whirlwind of medications, side-effects, colonoscopies, medical bills, restrictive diets, and the constant search for a “cure”. At my worst, I experienced rapid weight loss, blood loss, hair loss, major fatigue, frequency and urgency, often having to run to the bathroom upwards of 20 times a day. Lots of pain, bloating, and gas. I remember crying myself to sleep on the bathroom floor. I had to give myself an enema and I didn’t have the energy to get up. I was embarrassed that this was the situation I was in and I felt so physically and mentally exhausted. I’ve pooped my pants more times than I can count. I’ve honestly lost track.
I had to cancel plans at the last minute, I have experienced major anxiety and debilitating depression that lasted for months at a time. With the right treatment my life is full and fast moving. My husband and I love to travel. I love public speaking and love to share my story at empowering events for health and business. I’m a hobby collector. I love learning new things, but I never stick with anything long enough to become an expert (some call that ADHD lol).  I love to be active, but I hate exercising. So anything that gets me moving but feels less like exercise and more like fun is my jam. Roller Skating, indoor rock climbing, walking nature trails, trampolines, and dancing are just a few of the ways I like to be active.

I’d love for lawmakers to know that we need affordable healthcare options that cover those of us who are too healthy for disability but sometimes too sick to work. Living with a chronic illness can be a fulltime job in itself.

Watch April’s story to uncover why “Nonmedical Switching” and other unnecessary insurance hoops are such dangerous practices for patients. Watch her story. Find out from real patients what life with chronic disease feels like. The invisible pain, the insurance battles, and the hidden full-time job “being sick” entails, can feel like too much at times, and it is a weight you shouldn’t have to carry alone.
It is so important that patients with rare and chronic diseases are heard. Follow patient stories detailing life with lupus, multiple sclerosis, thyroiditis, Chron’s, RA, and other chronic and rare diseases.  Are you an infusion patient that wants to help shed light on the chronic disease journey? Reach out to the Infusion Access Foundation team so we can hear your story and help you find the right pathway for you to be really heard.

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