It’s almost time for me to say “sayonara” as I prepare to visit Japan on Wednesday. I have been invited by Novo Nordisk to present a keynote speech to a group of hematologists and nurses at their annual hematological meeting. This is a different audience for me, as I usually speak to patients groups and families. I am looking forward to it!
This will be a culture shock of a different kind. While I feel quite at home in Pakistan, India and Latin America, I have never really been to the far east. I visited Bangkok for one week during the World Federation of Hemophilia, but never got to really mingle with the people or see much of the country. On this trip, I will spend time with the doctors and nurses in Hiroshima, and then journey to Tokyo on the famous “bullet train” to meet with families with hemophilia.
Here’s a snapshot of hemophilia care in Japan: an estimated 4,000 people with hemophilia; nationalized health care so that everyone gets factor, although factor usage is about 70,000 per person (much lower than the US average of 100,000- 150,000). There are four factor VIII and two inhibitor products on the market. There is no homecare service, so families must go to a pharmacy to get their factor. Homecare would be revolutionary there; imagine!
The biggest difference I think is cultural: hemophilia is seen as something to not speak about in public. Parents are not seen as empowered; they are more dependent on the medical system. The message of “be empowered about hemophilia” is not one given in Japan.
I am sure I will learn more about this as I visit. My trip will take me to some special sights in historical Hiroshima, and I hope to blog about them as I travel. If everyone is as nice as those folks from Novo Nordisk and the patient groups I have been in contact with, then I am bound to fall in love with Japan, too, as I have many other countries!
Please tune in by Friday to read about my trip!
Note about Japanese flag: the “mon,” the central red disc, is called Hi-no-maru or sun-disc. The disc is set slightly towards the hoist. White symbolizes honesty and purity. Effective date: 5 August 1854.