Hemophilia Treatment Centers – A Guide for the Future of Sickle Cell Disease Management in the United States

Yendi FontenardDepartment of Public Health Sciences, University of Miami Miller School of Medicine, Miami, FL

INSIGHTS GAINED

CONCLUSIONS

INTRODUCTIONSICKLE CELL DISEASE (SCD) IN THE U.S.:

Description & Statistics Genetic disease in which red blood cells

form an abnormal crescent shape Absence of a national disease surveillance

& monitoring system Estimated # of cases: 90,000-100,000 Estimated prevalence rate : 1 in 500

Blacks ; 1 in 36,000 Hispanics Most common inherited blood disorder

Clinical Characteristics Often progressive with multi-organ

involvement Disease Management

Fragmented care for 1) adults and 2) pediatric to adult transitioning patients

Clinics dispersed throughout the U.S with varied scope of services

Requires lifelong comprehensive care Health Resource Utilization & Costs

~197,333 Emergency Dep’t visits per year Hospital charges much greater than that of

some more prevalent diseases ~ US$ 488 million in-patient costs per year ~ US$ 460,151 discounted lifetime cost of

care per patient

To propose a model for the delivery of SCD care in the U.S.

Examine model of care of a comparative disease

Conduct key informant interviews with the president (Dr. Lanetta Jordan) of the Foundation for Sickle Cell Disease Research (FSCDR) Provide administrative and research support for FSCDR’s grant proposal for a nationwide Sickle Cell Care Network Conduct a literature review via PubMed

OBJECTIVES

METHODOLOGY

A Comparison Standard of care available to people with Hemophilia - another rare, chronic,

clinically varied disease far exceeds that for SCD Estimated # of cases of Hemophilia in the U.S. only 20,000 Complications of Hemophilia: recurrent joint and organ bleeds, transfusion -

transmitted infections & adverse reactions to transfusions Like SCD patients - lifelong comprehensive care needed for Hemophiliacs

Management of Hemophilia in the U.S. National Hemophilia Treatment Centers(HTCs) program since 1975 with over 100

HTCs HTCs serve as patient-centered medical homes providing both medical & non-

medical services The scope of services provided by HTCs have resulted in:

1. Improved patient outcomes

2. Reduced burden of disease

SERVICES PROVIDED BY HTCs OUTCOMES OF PATIENTS UTILIZING HTCs

Access to: Reduced:

1. Diagnostic services 1. Unmet health care needs

2. Comprehensive insurance 2. Unnecessary ED use

3. Individual treatment plans 3. Medical expenditures per patient

4. Specialist providers 4. Under-Treatment

5. Clinical Management 5. Absenteeism

6. Prophylactic treatment 6. Avoidable health complications

7. Patient education & counseling 7. Mortality

8. Social Services

Fig.1 Population Estimates of SCD in the U.S.

Fig.2 Illustration of Sickling of Red Blood Cells

Fig.3 Complications of SCD: Childhood & Adulthood