Humanistic Burden Associated with Hemophilia A

Video

Atta Chowdhry, RPh, explores the burdens associated with hemophilia A.

Atta Chowdhry, RPh: The humanistic burdens associated with hemophilia A is that it's a potentially fatal disorder; joint damages, disabilities, it's a life-long struggle, and finding a good physician and a treatment center, sticking with your therapy, and understanding that if you don't take care of your chronic disease with the proper treatment, then it can cause some devastating effects down the road. Every bleed has consequences, every bleed causes certain damages in your body, and once you understand that as a patient or as a person who's suffering from hemophilia, their first and foremost responsibility is to prevent these bleeding episodes, that's where I think the biggest burden is for a patient. And sometimes, you do everything right and it's still not able to prevent a bleed and you have to go through all these different issues which come along with that.

For the quality of life for hemophilia A patients, imagine if you are a mother who has an infant that is suffering from hemophilia, and you end up accessing veins through that kid, trying to figure it out; the maze of the medical system to get that kid a proper treatment. Plus, the cost of the therapy, that is so high that you end up going through the insurance companies and getting it approved, and since the coming of approval of the ACA, the American Affordable Care Act, which took these lifetime caps away for these hemophilia patients. Otherwise, I have known parents who have switched jobs because the insurance that they were offered through their employer hit the lifetime cap of a million dollars, and at this point that insurance company will not provide the care for their kid. So, they had to change jobs in order to get that insurance for their kid to continue providing care for that kid. So that alone, itself, is very complicated for the parents to go through and suffer through all these different issues, and it's a lifetime struggle.

Transcript edited for clarity.

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