My Son Must Consider Health Issues When Planning for the Future
In June, my firstborn son, affectionally nicknamed MacDonald the Older, will turn 26 years old.
Conversations include career plans after his major milestone. He hopes to sing on Broadway and continues to get better with age. A vocalist myself, I hear his progress and believe he has an excellent chance to make it in the performing arts. The thing that concerns me is not talent but maintaining health insurance after he rolls off my plan.
Most young people his age don’t give healthcare much thought, but my boy must carry insurance so that he can adequately care for his bleeding disorder. Hemophilia isn’t cheap, and he will require help paying for the medications alone. For him, going a year or two without medical benefits isn’t possible. He must protect himself from any unexpected breakthrough bleeds that may occur.
I spoke with my benefits manager, and she told me that my son could stay on my medical plan for six months after his birthday. While this is not a permanent solution, it grants us more time to search for options. Hopefully, we will find health insurance alternatives that we don’t know about during our upcoming year of discovery. We will leave no stone unturned until we find our best option.
MacDonald the Older is nervous, and he feels unsure where to find answers for his future medical needs. I keep returning to what I know, which is two incredible agencies in the hemophilia community: the National Hemophilia Foundation and the Hemophilia Federation of America. They provide valuable resources for just about every issue we face in dealing with my boy’s bleeding disorder.
Both organizations offer the best and most current information regarding treatment, and the most advanced medical advice in the field. Through these two agencies, we can learn the appropriate courses of action to take for my boy. My involvement in each helps lay a solid foundation for pursuing my son’s best interests, as I can seek out information from those I know and trust.
As I write this column, a large part of me feels angry and wants to shout to the rooftops that this is not fair. Stepping into my boy’s career is hard enough, but to always remember hemophilia proves exhausting. He is supposed to concentrate fully on making the right connections, and not on how he will pay for his medicine, recombinant factor VIII. But I know that this is my son’s reality, so he must find a health insurance solution that works for him.
I believe that my son stands at the edge of a cliff and must get to the other side to explore his dreams. My role is to help him find the tools he needs to build a bridge to the other side. The frustration I feel now is from having no clue how to help him. Part of me looks up to the sky and asks, “What can I do to help my amazing young man?” Unfortunately, I hear nothing at the moment. I have faith that something will happen, and I will know the best way forward.
As a father, I feel it’s my duty to equip my son with every ounce of knowledge possible. I am his biggest cheerleader and want nothing to stop him from achieving his heart’s desire. My boy and I share a passion for what we do, even down to naming our pursuits: We seek our life’s callings. There is nothing in the world that he wants to do more than stand on a big stage and sing. I want to be there, hearing his beautiful voice as he shares his gift with the world.
And so, we stand, ready to build a bridge that leads to happiness.
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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.
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