From President Beverley Yamamoto, HAE Japan
We have seen great improvement in the treatment environment in Japan over the last two years, and in September the third long term prophylactic treatment was approved by the PMDA. Since last reporting to Global Perspectives, we have also seen the indications for use of Icatibant expanded to include pediatric use.
On 3 September 2022 we held our first face-to-face patient meeting since COVID-19 changed all our lives. The meeting was held in Tokyo at the Juntendo University Affiliated Hospital. We had 29 participants, including 20 patients and caregivers, two physicians and seven industry partners. Dr. Inage, a pediatrician at Juntendo Hospital, spoke about his experiences with pediatric patients, focusing particularly on unmet need, the need to go beyond his medical training to think about the social aspects of HAE for children, and the difficulties with treating a new category of “suspected HAE with normal C1” that has emerged in Japan. Following on from Dr. Inage, I spoke about the long-term prophylactic treatments now available or shortly to be made available in Japan.
Over a year ago, key industry stakeholders in Japan in consultation with patient leaders and physicians came together to create the Discovery Consortium, a charity to identify undiagnosed patients. HAE Japan has been working closely with the Consortium with representation on the Board of Directors and in one of the working groups, WG3. Although in Japanese, WG3 has created an up-to-date list of hospitals that can diagnose and treat HAE. This list is available at https://discovery0208.or.jp/hae-info/search.
Finally, a collaborative project between the Japanese Ministry of Health, Labour and Welfare and Takeda Pharmaceuticals has provided funding for building capacity around HAE physicians in Vietnam. Over the summer one of our medical advisory team, Dr. Honda, went out to Vietnam to talk with the doctors. In October the doctors came to Japan. On 29 October, I was invited as President of HAE Japan to give a talk to the doctors about the lived patient experience as well as patient reported outcome research that I have been involved in with some of the leading HAE physicians. Six doctors attended from Vietnam, and I was delighted at the wide range of questions that were asked.
