Skip to content Accessibility Mode

“My brother and I are just two”

Jeff Lee recently got in touch to ask: “How can I pitch in to the campaign?”

One of the most effective ways to connect with voters is by telling your personal story, so he decided to share his own:

I was born in 1985. My brother is just a year older than me, and we share a lot of things—of course, sometimes we fight, like all brothers do. But there’s one thing we share that sets us apart from most siblings: We both have a very rare disease, a primary immunodeficiency called X-linked agammaglobulinemia.

Back in the 1960s, my mother’s 2-year-old brother passed away suddenly—so when my brother and I were both babies, she had our doctors run some tests. When my brother was a year old—right after I was born—they took X-rays of his chest and saw spots on his lungs. It turns out, we both had a genetic condition that means our immune systems don’t work the way they should: Even a little bug, or the common cold, puts us at serious risk.

We had to go on expensive medicine—we learned how to give ourselves IVs when we were 13 years old. We still take IVs every other week, and it costs $4,000 a month each. It was a huge burden on our parents growing up, and that didn’t even include our regular doctor’s appointments. They always kept us in the dark about how big a toll it took, because they didn’t want us to worry. But from a very young age, they made us promise to go to college so we could find stable jobs with good health insurance, and always have coverage.

But things don’t always work out as planned. My brother worked as a freelance web designer for a short time, and I was laid off when the recession hit.

Thanks to the Affordable Care Act, my brother and I didn’t have to worry about losing our coverage, and the life-saving treatment we rely on, when we couldn’t get insurance through work. Because we were both under 26, we were able to stay on our parents’ excellent insurance coverage. And now that we’re older, we have peace of mind knowing that we can’t be denied a policy based on our pre-existing conditions.

But it’s really not just about me. I’m getting married this March, and I know that I can pass my disease to my children, and my grandchildren. I want to know that no matter what, they’ll be able to live happy, healthy lives, regardless of where they work, or how much money they make.

My brother and I are just two of the millions of people in this country with pre-existing conditions—and everybody in the U.S. should have an opinion about health care. I can see that President Obama has brought change, and he’s ready to do more. That’s why last month, I signed on to the Obama website for the first time to get email updates—and now, I’m looking out for volunteer opportunities where I live in Washington State.

The Affordable Care Act has meant real progress for all of us—find out what it’s doing for you.

Show Comments Hide Comments