Hemophilia Management

Introduction

Expert Interview

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Hemophilia Quick Facts

Findings with respect to hemophilia care in the US over the last 50 years based on the largest population of patients studied to date (4,899 males with severe factor VIII and IX deficiency)

Birth Years Key Findings
Prior to 1958
  • During early childhood and musculoskeletal development, plasma was available but clotting factor replacement was not.
  • Patients had neither access to specialized HTC clinical care nor home-based therapy during childhood.
1958 – 1975
  • Accurate laboratory diagnosis and treatment with cryoprecipitate or clotting factor VIII concentrate gradually became available but only in a limited number of bleeding disorder clinics primarily located in academic, urban hospitals.
  • Congress enacted the law establishing the first HTCs in 1975.
1976 – 1982
  • Hemostatic agents for individuals with inhibitors were introduced.
  • The innovation of teaching patients/families to administer factor concentrate in the home for prompt on-demand bleeding treatment was increasingly implemented at specialty hemophilia clinics.
1983 – 1993
  • HTCs expanded in number and geographic reach through federally mandated regionalization.
  • National systems for the surveillance of blood safety were established due in part to growing concerns regarding hepatitis C and HIV.
  • Prophylactic clotting factor replacement was recommended as the standard of care, although widespread adoption of primary prophylaxis was lacking at the time this group was of childhood age.

Source: Mazepa MA, Monahan PE, Baker JR, Riske BK, Soucie JM, on behalf of the U.S. Hemophilia Treatment Center Network. Men with severe hemophilia in the United States: Birth cohort analysis of a large national database. Blood. First Edition Paper, prepublished online March 16, 2016; DOI 10.1182/blood-2015-10-675140

Questionnaire

Q: What best describes your primary role?

Q: Approximately how many patients with hemophilia are being managed in your plan or practice setting?

Q: Which of the following metrics provides the greatest value for your organization or practice setting to document potential cost optimization in the management of hemophilia?

Advisory Board

Jennifer Maahs, RN, PNP, MSN
Nurse Practitioner
Indiana Hemophilia and Thrombosis Center

Vanita K. Pindolia, PharmD, BCPS
Vice President, Ambulatory Clinical Pharmacy Programs_PCM
Henry Ford Health System/Health Alliance Plan of Michigan

Steven W. Pipe, MD
Director, Division of Pediatric Hematology and Oncology
Pediatric Medical Director, Hemophilia and Coagulation Disorders Program
University of Michigan

Marion Koerper, MD Professor Emerita on Recall
Department of Pediatric Hematology
School of Medicine University of California, San Francisco
(UCSF) School of Medicine
Medical Advisor
National Hemophilia Foundation

Diane J. Nugent, MD Chair, Hematology
Medical Director, Hematology and Blood and Donor Services
Division Chief, Hematology
Children’s Hospital of Orange County

Celynda G. Tadlock, PharmD, MBA
Vice President Pharmacy Business Development, Aetna
President, Coventry Prescription Management Serivces, Inc.