Socioeconomic Evaluation of a State-Funded Comprehensive Hemophilia-Care Program

To assess the effectiveness, cost, and socioeconomic gains associated with a comprehensive state-funded hemophilia program, we compared data from a three-year experience with such a program in Rhode Island with those from the preceding year. self-treatment, integration of children into school, and achieving satisfying employment of adults are the main goals of the program. During the most recent year, 77 per cent of the patients with severe hemophilia in the state received total care through the Hemophilia Center. Twenty-eight of the 43 patients now treat themselves, the annual number of hospital days per patient has decreased from 12.6 to 3.5, and the number of visits to hospital facilities has fallen from 34 to 2.4, while the yearly cost of clotting factor per patient has remained about $7,000. Altogether, this has saved more than $10,000 each year for treatment, despite the cost of rehabilitative surgery. Numbers of days lost from school and work have decreased twofold and threefold, respectively. Best of all, comprehensive care has vastly improved the quality of life for patients with hemophilia in Rhode Island. (N Engl J Med. 1982; 306:575–9.) SEVERE hemophilia is devastating if treated timidly, for repeated hemorrhages eventuate in crippling joint, muscle, and nerve damage.^{1 2 3} Frequent spontaneous hemorrhages preclude regular school attendance by the child and uninterrupted work by the adult, leading to a lifelong pattern of absenteeism and isolation.^4,5 The person with severe hemophilia seeks medical care in emergency rooms, outpatient departments, and hospital wards, wastes countless hours, incurs debts, and often becomes a public charge.⁶ With the availability of cryoprecipitate and clotting factor concentrates, such care represents an unwarranted burden on both patients and society. As this became clear over the past decade, physicians, health.