In 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.
Read more »