Voices Across America

My Patient Story

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Megan

State: Wisconsin
Congressional District: WI04

Diseases

Gastrointestinal Disease, Immune Disease

Issues and Challenges

Megan has encountered: Out of Pocket Costs, Premium Payments, Price Transparency, Health Insurance Coverage is Inadequate

My Story

Everyone that knows me knows I was born to work in marketing.

In 2010 I got my foot in the door at a company that needed someone with a marketing perspective, who could grow the department. It was my first real marketing job, and I was so excited to accept the position, and along with it, a pretty good health insurance plan. You know, back in the good old days when deductibles were only $1000.

Fast forward a few years, and I was ready for a change. But I told myself that I needed this health plan, that it was too risky to switch companies and go into a new plan without knowing or understanding the details. What if the deductible was unaffordable? What if they forced me back to the drawing board when it came to treatment plans? What if they didn't cover my specialist, the single doctor in the state leading his department. The one with whom I have a great relationship, good communication, and knows my disease - and my whole person - well?

These aren't factors that most people think about when making major career moves, and it blinded me a bit, to the point where I ended up staying in that role long past the point where I had outgrown it.

I began job searching more seriously, all the time, wondering how this would affect my health, if I wouldn't position myself as a potential hire if I asked about insurance before getting an offer, and if I would get stuck because a quick Google search reveals my diagnosis and journey with Ulcerative Colitis.
Finally though, the perfect opportunity did come along. It was a role that was a perfect fit, that would give me room to grow, and had exceptional leadership and a supportive team in place. Seriously - the dream. The only problem was, I would have to cover my own health insurance.

During my stay at my first role, the ACA had passed and come into effect, allowing the health marketplace to open, and to have protections for people like me with pre-existing conditions. I searched the available plans, and I did a lot of math - a LOT - to make sure that I could make this move work financially. Again, most people aren't crunching these types of numbers to make sure it's financially feasible to not miss out on such an opportunity. Thankfully, I was able to find a plan and take the job, but I still live with the fear of things being entirely disrupted - my plan might become unaffordable. Copay Accumulators, should they come into effect in my state, might price me out of being able to afford a marketplace plan. They might stop covering my treatment, which has kept me in remission for 10+ years. It's a lot to think about. This tower could topple at anytime.

This is just one example, one story of what I deal with, what I think about as a chronic illness patient in America. This is just one story - of an otherwise healthy, in deep remission, solidly middle class female. If I'm recognizing and dealing with this huge weight, on this one important area of my life, think about how much that stretches across all of us, across all areas of our life, across those still dealing with active disease and fighting to find a treatment plan, so we call can just get one step closer to our dreams.

My Motivation and Inspiration

My motivation is what I like to call the 'ecosystem' of stories. I look back and realize all of the people that have given me what I needed along my journey, especially early as I was still dealing with acceptance. Without recognizing it, as I progressed in my own journey, I found myself turning around to pay forward those moments, messages, and lifting-ups that others had given me. As a volunteer at the Crohn's and Colitis Foundation's Camp Oasis, I've been able to take it even further - helping the older kids recognize this in themselves, and pay it forward to the younger campers, so we can all help carry each other forward.

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