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Hemophilia: A King’s Ransom To Treat “The Disease Of Kings”

globalgenesIn honor of World Rare Disease day and the Global Genes Project, I’d like to repost a fascinating interview with a young man who has hemophilia…

Hemophilia A is a blood clotting disorder sometimes referred to as the “disease of kings” since it is a genetically inherited (X-linked) bleeding disorder that was introduced by Queen Victoria to the Russian royal family in the mid 1800’s. Women are carriers of the gene, while males express the signs of the disease, so only the “kings” display the trait.

Today there are fewer than 18,000 individuals with hemophilia A in the United States. Those with the most severe form of the disease make less than 1% of the regular amount of a certain blood clotting glycoprotein (known as factor VIII) and are often dependent on the regular intravenous administration of this expensive factor to keep them from bleeding to death. The cost of factor VIII and associated medical care and hospitalizations is estimated at $150,000/year.

How do people with hemophilia A manage to get their medical needs met in our current healthcare system? I spoke with a young man with hemophilia A (we’ll call him “J”) to find out.
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Latest Interviews

IDEA Labs: Medical Students Take The Lead In Healthcare Innovation

It’s no secret that doctors are disappointed with the way that the U.S. healthcare system is evolving. Most feel helpless about improving their work conditions or solving technical problems in patient care. Fortunately one young medical student was undeterred by the mountain of disappointment carried by his senior clinician mentors…

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How To Be A Successful Patient: Young Doctors Offer Some Advice

I am proud to be a part of the American Resident Project an initiative that promotes the writing of medical students residents and new physicians as they explore ideas for transforming American health care delivery. I recently had the opportunity to interview three of the writing fellows about how to…

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Latest Book Reviews

Book Review: Is Empathy Learned By Faking It Till It’s Real?

I m often asked to do book reviews on my blog and I rarely agree to them. This is because it takes me a long time to read a book and then if I don t enjoy it I figure the author would rather me remain silent than publish my…

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The Spirit Of The Place: Samuel Shem’s New Book May Depress You

When I was in medical school I read Samuel Shem s House Of God as a right of passage. At the time I found it to be a cynical yet eerily accurate portrayal of the underbelly of academic medicine. I gained comfort from its gallows humor and it made me…

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Eat To Save Your Life: Another Half-True Diet Book

I am hesitant to review diet books because they are so often a tangled mess of fact and fiction. Teasing out their truth from falsehood is about as exhausting as delousing a long-haired elementary school student. However after being approached by the authors’ PR agency with the promise of a…

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