Japan Country Report From HAEJ - HAE International...
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Beverley Yamamoto, President HAEJ Makiko Matsuyama, Vice President HAEJ Japan Country Report From HAEJ
Transcript of Japan Country Report From HAEJ - HAE International...
Beverley Yamamoto, President HAEJ Makiko Matsuyama, Vice President
HAEJ
Japan Country Report From HAEJ
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2008 2009 2010 2011 2012 2013 2014 2015 20163
HAE Patients in Japan
Source : CSL Behring in-house data (2008 - March.2016)
Population of Japan 125 Million; estimated number of patients 2,500 (1:50,000 population)�
Management of HAE:Diagnosis and doctors
Japan
LowawarenessofHAEamonghealthcareprofessionals�
Nondiagnosisanddelayeddiagnosis�
OnlyoneproductlicensedforHAEtreatment–acute
aFack�
PaIenthasliFleautonomy–treatmentin
physician’shands�
50%ofdiagnosedpaIentsnotusingmodernHAEtreatments�
NoHAECenterofexcellence�
Management of HAE:Medication and treating attacks
• Reimbursed under Rare Disease Law (Nanbyo Ho 難病法) ü Monthly limit depending on income of insured Restrictions to use of Berinert for acute attack: ü Based on doctor’s discretion, but Japan Complement ü Research Society HAE guidelines influence this
• Rare diseases are a health priority
Japan
TreatmentsavailableinJapan
AcuteaFack
Short-termprohylacIc
Replacementtheraphy Self-admin Self
possesion
Berinert O X X X X
Cynryze X X X X X
Firazyr X X X X X
Ruconest X X X X X
Kalbitor X X X X X
Management of HAE:An emergency situation
• Still relatively low awareness of HAE in Emergency Centres
AcuteaFack�
Diagnosed�
IfCentreholdsBerinet–
treatmentusuallyfasttracked�
HospitalwithoutBerinet–delayed
response�
Notdiagnosed�
Inappropriatetreatmentlikely�
HAEJEstablishedNov2013�
March2014became
NMOofHAEi�
April2014RegisteredasNPO�
Future of HAE in Japan
• Accurate and timely diagnosis
• Management of HAE with effective medication that gives patients autonomy and control
• Engage in national and international advocacy to improve treatments further
• Collaborative approaches with physicians and industry, eg. clinical trials, patient registry, surveys and patient research
• Gain a voice in rare disease advocacy space in Japan and wider Asia Pacific
hae day :-)
• HAE Day registered with the Japan Anniversary Association
• Media Seminar • Press releases à blanket media coverage
Stay in touch
HAEJ • Contact: [email protected] or [email protected] • Organization contact details
– Website http://www.haej.org/ – Facebook
https://www.facebook.com/NPO法人-HAEJ – Twitter @HAEJ_info
Japan
