My son with hemophilia has had to learn about insurance the hard way

Despite my attempts to help, Julian is learning on his own terms

Cazandra Campos-MacDonald avatar

by Cazandra Campos-MacDonald |

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I was over the moon when my first son, Julian, was born in 1996. My baby was here, and life would never be the same.

When Julian wouldn’t stop bleeding after his circumcision, the pediatrician was visibly shaken. Seeing a doctor with furrowed eyebrows is disconcerting. The next day, my son was diagnosed with severe hemophilia, and life changed direction again.

The early years of raising a son with a bleeding disorder were stressful. At the time, I didn’t know there was a family history of hemophilia, and everyday life had a tinge of worry. Would I know if Julian was having a bleed? Would I know what to do?

I’m grateful to have been surrounded by a fantastic community of families through the Lone Star Bleeding Disorders Foundation. Many had children close in age to Julian, and we joined together to figure out how to care for our kids when hemophilia reared its head. The beauty of this community is that it’s filled with people of all ages and from all walks of life who help newly diagnosed families look forward and prepare for future issues.

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I was especially in awe of my friend Rita. She handled life with four children seemingly without effort. I know life wasn’t as easy as she made it seem, but she cared for her two sons with hemophilia with grace. I learned so much from her.

Rita showed me the importance of teaching our children at an early age how to manage their bleeding disorder. From filling out forms at the doctor’s office to ordering factor and supplies, I did my best to follow her lead.

For Julian, filling out forms and ordering factor was easy. However, I didn’t realize how difficult it would be to teach my son about health insurance.

Insurance issues necessitate a crash course

Even though I prefer to stick my head in the sand regarding insurance, I did my best to educate Julian on copays and deductibles. As the years passed, I emphasized the importance of understanding these concepts, but I don’t think he understood.

What could I have done differently? I thought I must have messed up.

I was scared when Julian turned 26 and my healthcare plan no longer covered him. We knew it was coming, and I tried to prepare him, but unfortunately, my son learned about insurance the hard way.

Julian is currently struggling with an issue regarding his insurance provider, so I encouraged him to reach out to his home infusion representative. As a parent involved in the bleeding disorders community, I understand the importance of making connections. I’ve found that knowing our pharmaceutical and home infusion representatives is vital, especially when we’re having insurance issues. They can even connect us with programs that cover factors and supplies for people in need.

For years, I tried to encourage my son to develop these relationships, but it wasn’t important to him — until recently.

After weeks of persuading, Julian finally called the home infusion company, and his representative has been a godsend in helping him work through the insurance issue.

Julian called me recently and said something that warmed my heart. “Mom,” he said, “now I see what you and Dad went through with insurance.” He remembers the days I’d spend on the phone, advocating strongly for his needs. Fighting with insurance companies to meet our needs took work. Sometimes I failed, but when I won, it was worth the effort.

I have learned a valuable lesson raising two sons with hemophilia: My sons have their own minds and opinions, and must figure things out on their own. Sometimes I have to sit on the sidelines, watch them struggle, and give thanks when they figure things out. Witnessing Julian take charge and fight for what he needs is gratifying.

He really was watching.


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, and are intended to spark discussion about issues pertaining to hemophilia.

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