UK Bleeding Disorder Statistics UK Bleeding Disorder Statistics UK - PowerPoint PPT Presentation

UK Bleeding Disorder Statistics UK Bleeding Disorder Statistics UK Bleeding Disorder Statistics UK Bleeding Disorder Statistics for 2007 for 2007 for 2007 for 2007 Dr CRM Hay Dr CRM Hay

Registrations: Registrations: - g - In 2007 In 2007 Total in Register Total in Register g Haem A Haem A Severe Severe 44 44 1,756 1,756 Total Total Total Total 137 137 137 137 6 303 6,303 6,303 6 303 De De- -registered 400+ registered 400+ Haem B Haem B Severe Severe 13 13 363 363 Total Total l l 34 34 1,340 1,340 VWD VWD male male 126 126 8,610 8,610 female female female female 229 229 229 229 Total all diagnoses Total all diagnoses Total all diagnoses Total all diagnoses 959 959 959 959 23 629 23 629 23,629 23,629

Density of Severe Haemophilia A & B population by patient post code area population ‐ by patient post code area

Density of Severe Haemophilia A & B Population ‐ by patient post code area – SE

Total Factor VIII / IX Usage (inc. inhibitor) by patient post code area d

Total Factor VIII / IX Usage (inc. inhibitor) by patient post code area ‐ London

Severe Haemophilia A – No. pts without inhibitor <18 years , treated by factor VIII issued by each centre 20 n 18 years 18 ents less than r = 0.93, p< 0.0001 0 93 0 0001 16 14 ophilia A patie 12 10 severe Haemo 8 6 6 IU issued to s 4 Million 2 0 0 10 20 30 40 50 60 70 80 90 No. severe Haemophilia A patients less than 18 years treated

N o pts lacking inhibitor ≥ 18 Severe Haemophilia A Severe Haemophilia A – N o . pts lacking inhibitor ≥ 18 yrs , treated by factor VIII units issued by each centre 20 r more 18 nts 18 years or r = 0.95, p < 0.0001 16 14 philia A patien 12 evere Haemop 10 10 8 IU issued to s 6 4 Million 2 0 0 10 20 30 40 50 60 70 80 90 No. severe Haemophilia A patients 18 years or more treated

Severe haemophilia A and B lacking inhibitor using only one product during 2007: median usage Age 18 years or more Age 18 years or more (413) [100,088 ‐ 122,912] Age less than 18 years Kogenate-Helixate (186) [95,134 ‐ 216,216] (270) [152,383-195,000] Advate (209) [102,118 ‐ 136,772] uct Produ (21) [75,755 ‐ 188,391] Refacto (45) [90,840 ‐ 151,051] (179) [119,679 ‐ 173,250] Benefix ( (95) [67,680 ‐ 109,683] ) [ ] (19) [47,358 ‐ 286,463] Plasma derived Plasma-derived Factor IX Median Usage (IU)

Severe Haemophilia A patients treated with FVIII products Severe Haemophilia A patients treated with FVIII products with no current inhibitor: median IU issued with no current inhibitor: median IU issued 250000 Cuzick’s trend p< 0.001 (n=286) (n 286) 200000 (n=282) ent (n=184) ( ) s per patie (n=173) (n=173) (n=78) 150000 edian unit (n=68) 100000 (n=266) Me 50000 0 0 9 0-9 10 19 10-19 20 29 20-29 30 39 30-39 40-49 40 49 50-59 50 59 60+ 60+ Age (years)

Factor VIII usage by UK Haemophilia Centres: 1989‐2007 1989 2007 400000000 Recombinant Plasma Total 378M units in 2007 350000000 300000000 250000000 ts 200000000 200000000 Uni 150000000 100000000 50000000 0 0 1989 1990 1991 1992 1993 1994 1995 1996 1997 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 Year

Market Share of factor VIII concentrates known to Market Share of factor VIII concentrates known to have been used by UK Haemophilia Centres Hyate C Speywood (Plasma) 0% CSL Behring (Recombinant) 9% CSL Behring (Plasma) 4% G if l (Pl Grifols (Plasma) 8% ) 8% Octapharma (Plasma) 1% BPL (Plasma) 1% Wyeth (Recombinant) 6% Baxter (Plasma) 0% Bayer (Recombinant) 34% Baxter (Recombinant) 37% Bayer (Plasma) 0%

Severe Haemophilia B : Pts lacking inhibitor < 18 yrs , compared to number of units issued d b f d 2 than 18 r= 0.78 r = 0 78 r = 0.78 atients less t 1.6 mophilia B pa 1.2 ars severe Haem yea 0.8 IU issued to 0.4 Million 0 0 2 4 6 8 10 12 14 16 18 20 No. severe Haemophilia B patients less than 18 years treated

Severe Haemophilia B : Pts lacking inhibitor ≥ 18 yrs compared to number of units issued d b f d 6 tients 18 5 r = 0 86 r = 0.86 philia B pa 4 ere Haemo rs or more 3 ued to seve year 2 illion IU issu 1 Mi 0 0 5 10 15 20 25 No. severe Haemophilia B patients 18 years or more treated

Severe Haemophilia B patients with no current inhibitor: median IU issued h b d d 180000 (n=102) 160000 140000 (n=61) (n=26) tient 120000 120000 its per pat (n=111) 100000 Median un 80000 60000 M 40000 20000 20000 0 0-19 20-39 40-59 60+ Age (years)

Total factor IX units used by UK Haemophilia Centres 1989‐2007 70000000 Recombinant Plasma Total 67.6M units in 2007 60000000 60000000 50000000 40000000 s Units 30000000 20000000 10000000 0 0 1989 1990 1991 1992 1993 1994 1995 1996 1997 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 Year

Market share of Factor IX concentrates known to have been used by UK Haemophilia Centres Baxter (Recombinant) 32% BPL (Plasma) 4% CSL Behring (Plasma) 1% Grifols (Plasma) 4% ( ) % Octapharma (Plasma) 0% Wyeth (Recombinant) 59%

Von Willebrand’s Disease Von Willebrand s Disease Von Willebrand s Disease Von Willebrand’s Disease Type 1 Type 1 2,223 2,223 Total registered Total registered Type 1A/B Type 1A/B Type 1A/B Type 1A/B 7 7 Male Male M l M l Type 2 Type 2 95 95 Female Female Type 2A T T Type 2A 2A 2A 169 169 169 169 Type 2B Type 2B 76 76 Type 2D T Type 2D T 2D 2D 1 1 Products used: Products used: - - Type 2M Type 2M 88 88 DDAVP + + + DDAVP + + + Type 2N Type 2N 43 43 Haemate P Haemate P 13.03M IU 13.03M IU Type 3 Type 3 69 69 Alphanate Alphanate p p 1.89M IU 1.89M IU Subtotal Typed Subtotal Typed 2,795 2,795 Wilfactin Wilfactin 1.04M IU 1.04M IU Un- Un -typed typed yp yp 5,992 5,992 8Y/Optivate 8Y/Optivate 8Y/Optivate 8Y/Optivate 0.75M IU 0.75M IU 0.75M IU 0.75M IU

Principal causes of death 2007 Principal causes of death 2007 (Haemophilia A, B and VWD). (Haemophilia A, B and VWD). � Carcinoma � Carcinoma Carcinoma Carcinoma 17 (2 Liver) 17 (2 Liver) 17 (2 Liver) 17 (2 Liver) � Ischaemic Heart Disease Ischaemic Heart Disease 13 13 � Haemorrhage Haemorrhage 16 16 � Cerebral Haemorrhage C C Cerebral Haemorrhage b b l H l H h h 9 9 � Liver failure � Liver failure Liver failure Liver failure 4 4 � Infection Infection 8 8 � AIDS AIDS 2 2

Haemophilia A, B and von Willebrand's Disease Pts p , (all severities) treated by UK Haemophilia Centres 20 15 r of Centres 10 10 Number 5 0 0 - 9 10 - 19 20 - 39 40 - 59 60 - 99 100 - 149 150 - 199 200 - 249 250 - 299 Number of Treated Patients

Severe Haemophilia A, B and von Willebrand's Disease pts treated by UK Haemophilia Centres 30 25 20 er of Centres 15 15 Numbe 10 5 0 0 9 0 - 9 10 19 10 - 19 20 - 39 20 39 40 - 59 40 59 60 - 99 60 99 100 - 149 100 149 150 - 199 150 199 Number of Severe Patients

Data Quality Data Quality Q Q y y � Commissioners consider that centres have a � Commissioners consider that centres have a Commissioners consider that centres have a Commissioners consider that centres have a contractual obligation to submit data to NHD. contractual obligation to submit data to NHD. � DoH requires return of data. DoH eq i es et DoH eq i es et DoH requires return of data. n of data n of data � They are increasingly looking to NHD for data to They are increasingly looking to NHD for data to support healthcare planning, benchmarking and support healthcare planning, benchmarking and reviews of service configuration. reviews of service configuration. � We therefore all have a duty to ensure the data We therefore all have a duty to ensure the data is therefore as accurate as possible. is therefore as accurate as possible. is therefore as accurate as possible. is therefore as accurate as possible. � In the last year we have made great strides in In the last year we have made great strides in improving data quality improving data quality improving data quality. improving data quality. � In the next year we intend to improve data In the next year we intend to improve data further further further. further.