What’s it like to live with a pre-existing condition in Trump’s America?

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One day after the House of Representatives approved a GOP plan that would repeal large parts of Obamacare and overhaul the country’s health care system, there are still a lot of questions about what exactly the bill would do–how many people might lose their insurance; the impact the bill would have on premiums and benefits; whether pre-existing medical conditions would be covered.

That last question is one that looms very large for some people. Among them is 25-year-old Anna Thorup. She lives in Pasadena and works full-time as a production coordinator in the movie business. And she has a pre-existing condition.

KCRW spoke with her about the health care bill and what it’s like to live with a pre-existing condition.

Anna Thorup: I was born with a rare skeletal syndrome called Bilateral Femoral Hypoplasia. Essentially, my femurs didn’t grow properly, so because of that my growth is stunted. There’s a range of health conditions that go along with that. For mobility, I use a powered wheelchair. It’s definitely not a progressive syndrome, however it does lend itself to the fact that I can get sick more often. My immune system is lower. There are just things I need that people who are generally healthy don’t need as much, like, for instance I receive a package of medical equipment each month.

KCRW: Are there any kinds of checkups, medical appointments or assistance that you need yourself to be healthy?

Anna Thorup: I see more specialists than the average person would, to keep things in working order and monitored. So, where most 25-year-olds have a primary care physician to kind of cover the basics, I have more specialists.

KCRW:  And how often do you find that you need to consult with these people, how often are you going to see them?

AT: Generally annually, just as checkups to make sure everything is going well, but certainly if something was discovered, I would be meeting with them more.

KCRW: Are you covered by insurance in your job?

AT: I am. Fortunately, I have employer-provided insurance.

KCRW: Did you feel any pressure when you came out of school to say hey, I’ve got to get a full-time gig somehow, cause I need that coverage?

AT: Absolutely. And there’s a lot of pressure to keep jobs that offer health insurance, which is difficult in the entertainment industry, because it’s very in flux. It’s filled with these lulls and hiatuses, so there’s a lot of pressure at first to get a job that will provide you insurance, but also keep a job that will keep providing you with insurance.

KCRW: Now typically, we don’t think of people in their 20s as having to worry about this kind of thing. You know, you think you get out of college, you spend a little bit of time bopping around job to job or doing some traveling, you know, that’s just part of sort of growing up. Here, you’ve had to tackle this from day one.

AT:  Yeah, definitely. And it’s something that’s always been on my mind and always been on my parents’ minds; they have been super supportive of me traveling across the country and working in this very unique industry, but obviously insurance was something we had a lot of long conversations about, and finding a job that would provide me with this insurance, and then making sure I understand its value and what I could lose if I moved on to a different job. The idea of being denied coverage or having coverage be so expensive that it’s unattainable, is something that I wasn’t thinking about before, but literally haven’t stopped thinking about since the discussions of repeal and replace came into effect. It’s a scary thing, and really does impact kind of every ounce of my day. It makes it kind of scary to think about what issues might come up in my health. If something were to happen with my job, what would I do? If I decided to leave my job for a different position, could I?

KCRW: You know, I think for a lot of people, these kinds of discussions about things like health care and insurance, they can sound at times very theoretical, very sort of pie in the sky. What would you say as far as sort of trying to put a human face on this issue?

AT:  There are so many people that walk around with pre-existing conditions and we don’t really think about it. I have a friend who seems like she is in the best shape, and she is, but I talked to her recently and she has asthma, and is very worried about affording her inhalers. I think you really have to consider how wide this net actually is. It’s not just the elderly, and it’s not just the people who are extremely sick. It can affect such a range of people.

(Photo: zeevveez)