Transitioning Insurance Plans: Will My Son Need to Sacrifice Passion?

Cazandra Campos-MacDonald avatar

by Cazandra Campos-MacDonald |

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As a parent, it is my responsibility to help my sons become productive, compassionate, caring individuals. My oldest son, Julian, is 25 and working to complete his college degree. He is on the cusp of transitioning to a new phase in life. In less than a year, he will no longer be covered by my insurance. I knew this day would come, yet it seems to have happened overnight.

Most parents of a soon-to-be 26-year-old son with hemophilia would hope that their son’s employer offers benefits. By 26, many young adults have a solid career path. Julian is a talented musician and actor, and his heart is leading him to a career in the arts. I love that my son carries the same passion for music and the arts that his father and I do, but I worry about his ability to carry his insurance.

My biggest fear is that Julian will have to make a choice. Will he ever need to sacrifice his passion to find a job that affords him health insurance? Unfortunately, this is a decision that many people living with chronic illnesses must face.

People with hemophilia need healthcare. That is an undeniable truth. Yet, there is no guarantee they can afford that necessary, lifesaving healthcare — at least in the U.S., where I live.

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I remember when insurance plans could exclude people with preexisting conditions from coverage. It was frightening to realize that my son could lose coverage simply from obtaining factor replacement therapy after reaching the $1 million limit. The elimination of lifetime and annual limits for those with bleeding disorders was a significant change that allowed individuals to keep their coverage. When a person developed complications such as an inhibitor, it was easy to reach the $1 million limit within a calendar year. The bleeding disorders community breathed a collective sigh of relief in 2014 when the law changed.

I am grateful to have private insurance. My jobs have enabled me to cover myself and my family for years. Julian’s venture into a career that does not promise insurance or even an income is frightening.

Instead of fearing the future, I am working to embrace the good in Julian’s journey to a career that is calling him.

What are the options for young adults ages 26 and older?

The Affordable Care Act (ACA) opened the door for young adults to remain on their parents’ insurance policies until the age of 26. Millions of young adults maintained coverage due to this change in the law. Medicaid laws have also changed. Thirty-nine states, including Washington, D.C., now offer Medicaid coverage based on income alone. If a person lives in one of the 12 states where this coverage is not available, shopping for a plan on the marketplace is an option.

Julian is getting overwhelmed at the thought of finding insurance. No matter how much his father and I help him, figuring out insurance is difficult to grasp. However, the Hemophilia Federation of America offers helpful resources for the community. I will direct Julian to their page of resources to help him get a better understanding of the basics he needs to consider.

I will always walk alongside my son, encouraging him every step of the way. I continue to be his fiercest advocate and biggest cheerleader. Sometimes that is what it takes to help young people find their way.

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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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