Jim Christensen: “Hemophilia Directed My Path”

Living with a severe bleeding disorder, I know what it’s like to worry about paying for prescription drugs
Author: Jim Christensen, as told to Donna Behen

I was diagnosed with severe hemophilia A at around 8 months old. I had problems from birth, mostly black eyes and bumps and bruises, but because there was no one else in my family with hemophilia, it wasn’t suspected.

There weren’t a lot of conversations about child abuse back then, but my mom said she was questioned heavily by doctors because this little kid kept coming in with all these black and blue marks all over.

For most of my childhood, I was either on crutches or in a wheelchair. I hardly ever went to school. I was fortunate enough to have what was called a home-to-school phone device through the Omaha public school system. There was a phone in the classroom from third grade up until high school, and pretty much the same kid carried that phone from class to class for me. They’d plug it in, and I’d listen in.

I started self-infusing for my hemophilia when I was 12. Back then, I did it with plasma and cryoprecipitate. I’m told I was one of the youngest ones to start doing self-infusion. But I just figured out early on that I could hit my veins better than anybody else could without as much pain.

Back in those days, if you did have insurance, it would not cover infusing at home. But I negotiated with the local hospital so that I could infuse at home and still have coverage. I remember setting up the meeting at age 14 with the insurance company and the CEO of our local hospital, and we all decided that this was the way it was going to get billed. So my mom and I would go down to the hospital every other day and pack up the medication in a cooler and bring it home, and I would infuse there in my living room. It changed my life, being able to do that.

Hemophilia has definitely made me as successful as I’ve been because it directed my path. At 20 years old, I decided I needed to find something that gave me flexibility in my schedule and that did not have me on my feet all the time, and I also needed to figure out a way to get health insurance. And that’s what got me started in the insurance industry, as a financial advisor.

A few years ago, when HSAs [health savings accounts] became so popular, a lot of plans still did not have prescription drug card coverage or good coverage. And anybody who had any type of preexisting condition was out of luck, just like I had always been. So I started trying to figure out a way to make sure that everyone could get some improvements to their plans or get some kind of help if they were totally uninsured. That’s why I founded my company, inSourceRx, which offers consumers a discount card for prescription medications. In addition, we give money back to philanthropic organizations that share the discount card with their members.

Growing up, I thought my life wasn’t all that much different than anybody else’s, even though I was either in a wheelchair or on crutches. And it’s been a great life in so many ways. There are very few people who are in my situation who don’t wake up every morning and know how valuable waking up every morning is.