Will my son have to sacrifice passion? – Hemophilia news today


As a parent, it is my responsibility to help my sons grow into productive, compassionate, and caring individuals. My eldest son, Julian, is 25 and working towards his university degree. He is about to move into a new phase of his life. In less than a year, he no longer be covered by my insurance. I knew this day would come, yet it seems to have happened overnight.

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

My biggest fear is that Julian has to make a choice. Will he ever need to sacrifice his passion to find a job that offers health insurance? Unfortunately, it’s a decision that many people living with chronic conditions have to face.

People with hemophilia need health care. It is an undeniable truth. Yet there is no guarantee that they can afford this necessary and life-saving health care – at least in the United States, where I live.

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I remember when insurance plans could exclude people with pre-existing conditions from coverage. It was scary to realize that my son could lose his coverage just by getting factor replacement therapy after hitting the $1 million limit. The elimination of lifetime and annual limits for people with bleeding disorders was a significant change that allowed people to keep their coverage. When someone developed complications such as an inhibitor, it was easy to hit the $1 million limit in 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 covered me and my family for years. Julian’s journey into a career that promises no insurance or even income is frightening.

Instead of fearing the future, I strive to embrace the good in Julian’s journey to a career that calls.

What are the options for young adults 26 and older?

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

Julian is upset about finding insurance. No matter how much his father and I help him, finding insurance is hard to understand. However, the American Federation of Hemophilia offers useful resources for the community. I will direct Julian to their resource page to help him better understand the basic elements he must take into account.

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


To note: Hemophilia news today is strictly a disease news and information site. It does not provide medical advice, diagnosis or treatment. This content is not intended to replace professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health care provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of anything you 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 on issues relating to haemophilia.


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