• Share
  • Email
  • Embed
  • Like
  • Save
  • Private Content
Challenges in RX hemophilia-2
 

Challenges in RX hemophilia-2

on

  • 224 views

 

Statistics

Views

Total Views
224
Views on SlideShare
224
Embed Views
0

Actions

Likes
0
Downloads
1
Comments
0

0 Embeds 0

No embeds

Accessibility

Upload Details

Uploaded via as Microsoft PowerPoint

Usage Rights

© All Rights Reserved

Report content

Flagged as inappropriate Flag as inappropriate
Flag as inappropriate

Select your reason for flagging this presentation as inappropriate.

Cancel
  • Full Name Full Name Comment goes here.
    Are you sure you want to
    Your message goes here
    Processing…
Post Comment
Edit your comment
  • There still has a long way for us to reach optimal care in all regions. Nevertheless there have been significant improvements in the past 7 years. The efforts have started in 2004 at the 6 centres that form the HTCCNC and have been extended now to 17 other centres.
  • e
  • The improvement of clinical and lab expertise in these centres has lead to an increase of x% in the diagnosis over the last 5 years. Also, one major achievent was the adoption by the MoH of the electronic registry created during our CN1 project.
  • We would like to aknowledge here important players and contributors to the ongoing change. The progress is now at an accelarated pace and we look foward to a future with better care everywhere in China.

Challenges in RX hemophilia-2 Challenges in RX hemophilia-2 Presentation Transcript

  • Challenges in the treatment of hemophilia Renchi Yang, MD Institute of Hematology and Blood Diseases Hospital, Chinese Academy of Medical Sciences
  • Healthcare Delivery System • Developed countries • Emerging countries • Developing countries • Undeveloped countries
  • Challenges • Complications: inhibitor development, viral infections (HIV, Hepatitis, etc) ; hemarthropathy/pseudotumor • Aging issue • Affordable? • Available? • Compliance
  • Adherence rate toAdherence rate to secondsecondaryary prophylaxisprophylaxis among pamong patienatientsts with severe hemowith severe hemo philiaphilia AA Ono O et al., Haemophilia 2009;15:1032–8 100 % 90 % 80 % 70 % 60 % 50 % 40 % 30 % 20 % 10 % 0 % 3-5 6-12 13-18 19-29 30-39 40-49 50- yrs of age >= 50 % 75-51 % 90-76 % > 90 %
  • Obstacles against introduction ofObstacles against introduction of thethe prophylaxis by ageprophylaxis by age Ono O et al., Haemophilia 2009;15:1032–8yrs of age Total score Difficulty in venous access Risk for appearance of inhibitors Mental stress on the patient Unwillingness of family members Feeling no necessity Inadequate system for guidance Problems with drug safety Poor adherence to replacement therapy Others 250 200 150 100 50 0 < 3 3-5 6-12 13-
  • Hemarthropathy in different age goups Zhang L, et al. Hemophilia 2003,9(6):696-702
  • Pseudotumor
  • BeijingBeijing TianjinTianjin HefeiHefei JinanJinan GuangzhouGuangzhou Hong KongHong Kong ShanghaiShanghai CHINACHINA Area: 9 600 000 KmArea: 9 600 000 Km22 Population: 1.3 billionPopulation: 1.3 billion
  • ● 6 initial network ● 17 new centres Haemophilia care situation • Low diagnosis rate • Lack of specialised hospitals –clinical and lab expertise • Complex medical insurance system • Access and availbility of treatment • Lack of awareness
  • Current Status of treatment Ø Low supply of plasma derived concentrates Ø High cost of concentrates Ø Low coverage and reimbursement by Insurance
  • “Planned care is more effective than random care”
  • WFH HTCCNC Secretary: Renchi Yang Vice secretary: Xuefeng Wang Tianjin Institute of Hematology Beijing PUMC Hospital Shanghai Ruijin Hospital Guangzhou Nanfang Hospital Hefei Anhui Provincial Hospital Jinan Shandong Blood center National Hemophilia Registry Center Coagulation Testing Training Center Hemophilia Nurse Training Center Physiotherapist Training Center Chinese Society of Hematology Thrombosis and Hemostasis Committee
  • Regional Hemophilia Network Beijing : Henan, Shanxi, Gansu Qinghai, Ningxia, Xinjiang Tianjin : Hebei, Shaanxi, Inner Mongolia Liaoning, Jilin, Helongjiang Guangzhou : Guangxi, Hainan Yunnan, Guizhou Shanghai : Jiangsu, Zhejiang, Fujian Sichuan, Chongqing Anhui : Jiangxi, Hunan Hubei Shandong : Tibet
  • HTCCNC meeting • 1st HTCCNC meeting: Jinan, 2004 • 2nd HTCCNC meeting: Shanghai, 2005 • 3rd HTCCNC meeting: Hefei, 2006 • 4th HTCCNC meeting: Beijing, 2007 • 5th HTCCNC meeting: Tianjin, 2008 • 6th HTCCNC meeting: Guangzhou, 2009 • 7th HTCCNC meeting: Jinan, 2010 • 8th HTCCNC meeting: Wuhan, 2012
  • Evolution of Product Availability – Before 1995 : Cryoprecipitates, FFP, plasma derived concentrates (non virus- inactivated) – 1995 : Domestic produced plasma derived concentrates (virus-inactivated) – 2002 : rhFVIIa ( NovoSeven ) – 2007 : rhFVIII ( Kogenate FS® ) – 2013: Adavate, Xyntha, Benefix
  • Evolution of Medical Insurance – Before 2001 : No national medical insurance program – 2002 : Some hemophilia patients covered by medical insurance – 2003 : FVIII concentrates / PCC covered by medical insurance in some cities (Tianjin, Beijing, Shanghai, etc.) – 2005 : FVIII concentrates covered by national medical insurance all over the country – 2007 : outpatient covered as inpatient – 2008 : rhFVIII concentrates covered by medical insurance in some cities (Guangzhou, Tianjin, etc.)
  • Electronic patient registry
  • 2010-Q42010-Q4 :各中:各中 心电脑和打印机心电脑和打印机 到位到位 2010-3-72010-3-7 :血友病病例:血友病病例 信息报送培训会信息报送培训会 2010-4-162010-4-16 :人民网“名:人民网“名 医大讲堂”介绍国家血医大讲堂”介绍国家血 友病登记系统友病登记系统 2010-1-122010-1-12 :百特与卫生:百特与卫生 部签署捐赠协议部签署捐赠协议 2010-4-13 , News conference 2010-7-6, Provincial center workshop
  • Inhibitor rate in China • 1435 hemophilia ( 16/3/2007-5/6/2008 ) : 1108 severe , 249 moderate , 78 mild. 1363 no relation. • 56/1435 ( 3.9% ) inhibitor , 18/56 ( 3 2.1% ) high titer (≥ 5BU/ml ) . • Severe : 48/1108 ( 4.3% ); Moderate : 6/249 ( 2.4% ); Mild : 2/78 ( 2.5% )。 Wang XF, et al. Haemophilia 2010, 16(4):632-9
  • Key players & contributers l Beijing l Henan l Xinjiang l Xi’an l Ningxia l Lanzhou l Qinghai l Tianjin l Ha’erbin l Shanxi l Changchun l Dalian l Hebei l Shenyang l Guangzhou l Guiyang l Shenzhen l Hainan l Kunming l Guangxi l Shanghai l Fujian l Wenzhou l HangzhouX2 l Suzhou l Chongqing l ChengduX2 l Yangzhou l Hefei l Changsha l WuhanX2 l Jiangxi l Shandong l Beijing l Henan l Xinjiang l Xi’an l Ningxia l Lanzhou l Qinghai l Tianjin l Ha’erbin l Shanxi l Changchun l Dalian l Hebei l Shenyang l Guangzhou l Guiyang l Shenzhen l Hainan l Kunming l Guangxi l Shanghai l Fujian l Wenzhou l HangzhouX2 l Suzhou l Chongqing l ChengduX2 l Yangzhou l Hefei l Changsha l WuhanX2 l Jiangxi l Shandong Organizations • National Haemophilia Study Group since 1985 • Haemophilia Home of China established in 2000 • Haemophilia Treatment Centre • Collaborative Network of China established in 2004 Development support • WFH since 2001 • NNHF fellowships & projects since 2006 • GAP programme started in 2009 • Grants by pharmaceutical companies
  • Acknowledgement • Members of the HTCCNC: Dr. Xinsheng Zhang, Dr. Jing Sun, Dr. Xuefeng Wang, Dr. Jingsheng Wu, Dr. Runhui Wu, Dr. Renchi Yang and Dr. Yongqiang Zhao • Consultants: Prof. Man-Chiu Poon, Calgary, CANADA, Dr. K.H. Luke, Ottawa, CANADA, Prof. Changgeng Ruan and Prof. Hongli Wang • Hemophilia Patients Union of China • World Federation of Hemophilia, Novo Nordisk Hemophilia Foundation • Baxter, Bayer, Novo Nordisk, Pfizer • Ministry of Health, PRC
  • THANKSTHANKS !!