When my oldest son was diagnosed with severe hemophilia at birth, I found myself catapulted into a world I never knew existed. I became part of the bleeding disorder community, like it or not.
I slowly began to realize that this community was filled with passionate, well-educated people who knew more about the disorder than most doctors. I wondered, “How in the world would I fit in? I don’t know where to begin.” Fierce mama bears protected their hemophilia cubs like nothing I’ve ever seen. There were certainly no wallflowers among them.
While I was learning about hemophilia from this amazing community, insurance suddenly became important. My head had always been in the sand when it came to insurance, but I realized I could no longer go with a health maintenance organization on the cheap. I had to think about what was best for my son.
I barely knew the difference between an HMO, or health maintenance organization, and a PPO, or preferred provider organization. The big issue that hemophilia patients and their families were discussing at the time was the abolishment of lifetime caps — that is, maximum amounts that insurance would cover in a patient’s lifetime.
I remember thinking, “Isn’t a million dollars enough?” Surely expenses couldn’t pass that in a patient’s lifetime. I was naïve. Fortunately, Congress abolished lifetime caps, letting the bleeding disorder community breathe a sigh of relief.
It wasn’t until I had my second son, who was also diagnosed with severe hemophilia, that I realized how fortunate we were that lifetime caps no longer existed. Just to name a few expensive complications: Our youngest, who was born in 2006, developed a high titer inhibitor at 11 months old, has had six ports for obtaining IV medicine, numerous port infections, two target joints, and became allergic to clotting protein Factor VIII.
Some people with hemophilia develop inhibitors that prevent clotting-factor medications from continuing to work. A target joint is one particularly vulnerable to bleeding. The definition is three bleeds in the joint in three months.
When our youngest was in second grade, he was in the hospital more than at home. Once he was hospitalized for weeks as we tried to get a knee bleed under control and were unable to manage his pain at home. The cost of his factor for that one hospital stay was over $ 1 million, and he was only 7 years old. If lifetime caps had been in effect, I don’t know what we would have done.
If you have a loved one who suffers from a chronic illness, rare disease, disorder or disability, you can’t afford to have your head in the sand. I admit that when open-insurance enrollment comes around in the fall of each year, I will often go with the higher-priced plan that provides more options without researching the details. But with Congress considering repealing or replacing current government health coverage, I need to keep on top of what a change will mean to us and the hemophilia community.
The National Hemophilia Foundation does a fantastic job of keeping the bleeding disorder community aware of how healthcare changes could affect us. If you are unsure how the changes that Congress is considering could impact someone in your life with hemophilia — and your life — reach out to the community on Facebook. Some wonderful, informative hemophilia support groups are there.
It’s not enough to say “My job provides good insurance — I’m good to go!” Changes will affect everyone. Be aware. Be proactive. Understand what is going on. You will soon realize that when your head is out of the sand, you’ll be able to breathe easier. Knowledge is indeed power.
Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to hemophilia.