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References 1 CDC. Diagnosis & Severity of Registry Participants
References 1 CDC. Diagnosis & Severity of Registry Participants. Males with Hemophilia Registry Report 2017-2017. Available at: https://www.cdc.gov/ncbddd/hemophilia/communitycounts/registry-report-males/diagnosis.html 2 Li N, Sawyer EK, Maruszczyk K, et al. Adult lifetime cost of hemophilia B management in the US: payer and societal perspectives from a decision analytic model. J Med Econ. 2021;24(1):363-372.doi:10.1080/13696998.2021.1891088. 3 Srivastava, A, Santagostino, E, Dougall, A, et al WFH guidelines for the management of hemophilia, 3rd edition. Haemophilia 2020 26 (Suppl. 6):1-158. 4 Palareti et al. Shared topics on the experience of people with haemophilia living in the UK and the USA and the influence of individual and contextual variables: Results from the HERO qualitative study. International Journal of Qualitative Studies on Health and Well-being. 2015, 10:28915. Available at: http:dx.doi.org/10.3402.qhw.v10.28915 5 Burke et al. Clinical, humanistic, and economic burden of severe hemophilia B in the United States: results from CHESS US and CHESS US+ population surveys ... Orphanet Journal of Rare Diseases. 2021. 16:143. Available at: https://doi.org/10.1186/s13023-021-01774-9. 6 Buckner TW, et al. Eur J Haematol. 2018;100(Suppl 1):5-13. 7 Chen et al. Economic Burden of Illness among Persons with Hemophilia B from HUGS Vb: Examining the Association of Severity and Treatment Regimens with Costs and Annual Bleed Rates. Value in Health 20. 2017; 1074-1082. 8 Cutter et al, 2017. Impact of mild to severe hemophilia on education and work by US men, women, and caregivers of children with hemophilia B: The Bridging Hemophilia B Experiences, Results and Opportunities into Solutions (B-HERO-S) study. 2017. Available at: DOI: 10.1111/elj.12851. 9 Buckner TW, Bocharova I, et al. Health care resource utilization and cost burden of hemophilia B inthe United States. Blood Advances. 2021 April; Vol 5, Issue 7, Pages 1954-1962.
References 1 CDC. Diagnosis & Severity of Registry Participants
References 1 CDC. Diagnosis & Severity of Registry Participants. Males with Hemophilia Registry Report 2017-2017. Available at: https://www.cdc.gov/ncbddd/hemophilia/communitycounts/registry-report-males/diagnosis.html 2 Li N, Sawyer EK, Maruszczyk K, et al. Adult lifetime cost of hemophilia B management in the US: payer and societal perspectives from a decision analytic model. J Med Econ. 2021;24(1):363-372.doi:10.1080/13696998.2021.1891088. 3 Srivastava, A, Santagostino, E, Dougall, A, et al WFH guidelines for the management of hemophilia, 3rd edition. Haemophilia 2020 26 (Suppl. 6):1-158. 4 Palareti et al. Shared topics on the experience of people with haemophilia living in the UK and the USA and the influence of individual and contextual variables: Results from the HERO qualitative study. International Journal of Qualitative Studies on Health and Well-being. 2015, 10:28915. Available at: http:dx.doi.org/10.3402.qhw.v10.28915 5 Chen et al. Economic Burden of Illness among Persons with Hemophilia B from HUGS Vb: Examining the Association of Severity and Treatment Regimens with Costs and Annual Bleed Rates. Value in Health 20. 2017; 1074-1082. 6 Buckner TW, et al. Eur J Haematol. 2018;100(Suppl 1):5-13. 7 Cutter et al, 2017. Impact of mild to severe hemophilia on education and work by US men, women, and caregivers of children with hemophilia B: The Bridging Hemophilia B Experiences, Results and Opportunities into Solutions (B-HERO-S) study. 2017. Available at: DOI: 10.1111/elj.12851. 8 Buckner TW, Bocharova I, et al. Health care resource utilization and cost burden of hemophilia B in the United States. Blood Advances. 2021 April; Vol 5, Issue 7, Pages 1954-1962.
The current standard of care for people with moderate to seve
The current standard of care for people with moderate to severe hemophilia B includes lifelong prophylactic infusions, but risks still remain3
People living with hemophilia B whose disease is not controll
People living with hemophilia B whose disease is not controlled are particularly vulnerable to:
• Spontaneous and/or traumatic bleeding into their muscles
• Spontaneous and/or traumatic bleeding into their muscles, internal organs and joints. Sometimes these bleeds can be life-threatening and possibly lead to permanent physical debility • Significant impact on quality of life3,4
Up to two-thirds of people with hemophilia B have a
Up to two-thirds of people with hemophilia B have a moderate or severe version of the condition1
About Hemophilia B
About Hemophilia B
People with hemophilia B face a lifetime of physical, mental a
People with hemophilia B face a lifetime of physical, mental and economic challenges
THE BURDEN OF HEMOPHILIA B - BY THE NUMBERS
THE BURDEN OF HEMOPHILIA B - BY THE NUMBERS
Living with Hemophilia B - Lifetime Burden
Living with Hemophilia B - Lifetime Burden
of people living with hemophilia B experience depression, anx
of people living with hemophilia B experience depression, anxiety or other psychological disorders6
Layer 45
43
43
%
%
lifetime treatment costs for adults with moderate to sever
lifetime treatment costs for adults with moderate to severe hemophilia B in the U.S.2
overall healthcare costs for people living with hemophilia
overall healthcare costs for people living with hemophilia B compared to individuals who do not have a bleeding disorder8
higher
higher
times
times
from work per year due to hemophilia B
from work per year due to hemophilia B
5
5
%
%
of adults with hemophilia B report the condition negatively
of adults with hemophilia B report the condition negatively impacts their employment7
95
95
%
%
Work productivity losses account for approximately $13,000 in a
Work productivity losses account for approximately $13,000 in annual indirect costs per U.S. patient5
156
156
With up to 156 intravenous infusions per year, people with
With up to 156 intravenous infusions per year, people with hemophilia B are at risk for vein collapse3
$13,000
$13,000
20
20
~
~
~
~
25
25
3.5
3.5
million per person
million per person
missed days
missed days
Hemophilia B is a rare bleeding disorder that affects ~6,000
Hemophilia B is a rare bleeding disorder that affects ~6,000 people in the U.S.1,2
~6,000
~6,000
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