My son must face reality as he deals with his health insurance company

Advocacy is important, but obtaining hemophilia treatment must be the priority

Joe MacDonald avatar

by Joe MacDonald |

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I walked into my home and heard my oldest son, Julian, having a heated conversation over the phone. He hung up and threw his phone down in absolute frustration.

“What’s wrong?” I asked.

He said, “How did you and Mom navigate hemophilia treatment with our health insurance company? This is my first attempt to negotiate a fair deal, and the company wants nothing to do with my suggestions. The only way they’ll pay for my medicine, Hemlibra [emicizumab-KXWH], is if I do what they ask. I’m sorry, but I refuse to let anyone bully me. I won’t order anything.”

“But son,” I said, “the most important thing is to get your medicine. You can argue with the company later, but you must follow protocol until you find a resolution.”

I want to say that he stopped, paid attention, and listened to reason, but none of those things happened. Furious, he didn’t want to give one inch regarding the issue. He knew he was right, so the thought of raising a white flag was out of the question.

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A difficult dilemma

As Julian continued to express his feelings loudly, I felt anger rise in me, but kept my mouth shut. My internal dialogue went like this: “What in the hell are you thinking? You need your medicine, so do what you need to do to secure it. Remember, you will leave town on Wednesday to spend the summer in North Carolina, and I doubt you can have Hemlibra delivered easily to your location in the Smoky Mountains.”

Thankfully, until writing down my mental outburst here, the thoughts stayed in my brain, preventing an argument. I knew Julian would catch his breath, listen to reason, and figure out how to resolve the problem. Sure enough, when he felt more at peace, he asked me for strategies concerning his dilemma.

I looked into his eyes and acknowledged his anger. I explained to him that in the world of health insurance, sometimes the best approach is to give in, but to never give up. He looked at me as if I’d cursed against all that was holy.

“Dad, I’m right on this issue. If I don’t take a stand, the company might prey on someone who’s unable to speak up.”

I looked at my newfound activist, who demonstrated the strength of his parents. Inside, I wanted to shout, “Fight!” Unfortunately, the resolution to Julian’s issue was to continue lobbying legislators and advocating for better procedures while following the ones in place. Obtaining Hemlibra must be my son’s No. 1 priority. Everything else follows, including advocacy.

Watching my son fight for what he believes to be correct makes me feel like my wife, Cazandra, and I helped him forge a solid and healthy way to take charge of his care and to express himself when confronted with ideas that conflict with his own. I’ll admit that he comes by speaking his truth quite naturally.

Julian decided to take his current month of Hemlibra to the mountains of North Carolina and keep working to find a just resolution with his health insurance company. I hope the issue can be resolved through open communication and a willingness from both parties to work out an agreement.

While there appeared to be a lot of tension between my son and the company, I came away from the encounter a proud dad. Julian defended himself by taking his concerns to the source. I hope he continues this trend as he becomes more knowledgeable about advocating for himself.

We know that we stand on the backs of past lobbyists who taught us the art of standing up for our rights. I want my family to express themselves in good and bad times. Without realizing it, our advocacy may equip future generations to continue the good fight for a cure.

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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