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Hemophilia 2009 Improving quality of cure…through life…until a Lower mortality Improved outcomes Fewer hospitalizations Educated independent patients 2000, Soucie, et al Mortality in hemophilia 1998, Nuss et al, Medical care in hemophilia www.hemoalliance.org 2009 Established in 1975 – ◦ Congressional funding for treatment centers (Section 1131 of the Public Health Service Act) Model for Specialty Disease Management for fragile population with costly rare disease * Grant funding—intended to fully fund public health clinics ◦ Centers for Disease Control & Prevention ◦ Maternal & Child Health Bureau (Health & Human Services) Currently 143 funded centers in 48 states *1984 Article on Benefits of Comprehensive Care Center www.hemoalliance.org 2009 Identify persons with hemophilia and thrombotic disorders Provide comprehensive diagnostics, treatment, education, and consultative services for physicians, patients and their families Provide educational programs for professional and paraprofessional individuals involved with bleeding disorder care Assess and provide treatment for the long-term complications of hemophilia including inhibitors, liver disease, AIDS, and psychosocial issues Advance knowledge through research in coagulation disorders www.hemoalliance.org 2009 Physicians Nurses Physical Therapist Social Worker Pharmacists Reimbursement counselors Administrative staff Adjunct staff: Orthopedics, dental, genetics, coagulation lab, infectious disease, hepatology, radiology www.hemoalliance.org 2009 State-of-the-art medical treatment for persons with hemophilia through the life span Education Research Outreach Model of comprehensive care for chronic disease www.hemoalliance.org 2009 Clinical Research Pharmacy www.hemoalliance.org 2009 1890s - clotting link identified 1910s - mixed blood studies 1930s - normal plasma “corrects” defect 1940s - transfusion therapy 1950s - fresh frozen plasma 1960s - cryprecipitate developed 1970s - lyophilized product & home use 1980s/1990s - advances in product safety & purity www.hemoalliance.org 2009 Diagnosis Treatment – in/ & out-patient Education and Disease Management Comprehensive multi-disciplinary clinic Specialized lab testing Genetics – education, prenatal testing Dental care—evaluation, education Physical therapy Psychosocial support, crisis intervention, transitions, support groups, direct counseling Coordination of care at other institutions Integration of factor distribution with treatment www.hemoalliance.org 2009 Recognition of bleeding episodes Early versus late treatment Replacement of clotting protein Appropriate intervention to prevent complications www.hemoalliance.org 2009 Prophylaxis -- ⇩ bleeding episodes Enhanced infusion protocol - ⇩ effects of bleeding “On demand” therapy – treat each bleed episode www.hemoalliance.org 2009 Lyophilized Factor VIII produced by recombinant technology www.hemoalliance.org 2009 Circulating antibody to factor VIII or IX Affects 8-20% of severe fVIII patients Affects 1-3% of FIX Treatment ◦ increase factor ◦ bypass antibodies ◦ immune intolerance www.hemoalliance.org 2009 HIV HEP B and C Parvo Virus CJD (Creutzfeldt-Jakob Disease) www.hemoalliance.org 2009 Adequate factor VIII to overwhelm the inhibitor and maintain an adequate factor VIII level Porcine factor VIII Designer human-porcine hybrid FVIII molecules rFVIIa (NovoSeven) FEIBA Plasmapheresis www.hemoalliance.org 2009 Provide education for disease management Promote healthy development consistent with disease Provide support for normalcy within community Provide supportive network for families www.hemoalliance.org 2009 Clinical Research Pharmacy www.hemoalliance.org 2009 Clinical research studies Outcomes research ◦ Improved products for treatment -- Not experimental ◦ New technology for delivery of care ◦ Viral safety improvements ◦ ◦ ◦ ◦ ◦ ◦ Joint outcome study Radiological evaluation Hemophilia Utilization Group Study Quality of Life Satisfaction surveys Radiosynoviorthesis www.hemoalliance.org 2009 Better health care outcomes ◦ Delayed treatment leads to poor outcome ◦ Customized/individualized care Maximizes use of product and services ◦ Clinic visit vs. ED or hospitalization ◦ Better follow-up www.hemoalliance.org 2009 To integrate factor distribution with clinical care for seamless coordination of care and better outcomes To be low cost provider To reflect and fulfill our non-profit, public sector mission in financial relationships with patients, insurers, and other providers. www.hemoalliance.org 2009 LOCAL ACCESS Immediate treatment—reduces complications; requires less factor for treatment Reduces ED visits or hospitalization (only 72% of patients on home care) Facilitates admissions to local institutions-factor procurement and staff education Provides 24/7 delivery throughout region www.hemoalliance.org 2009 CUSTOMIZED TREATMENT Customized dosing based on assay availability and patient recovery data— maximum use of resources Customized dispensing—contributes to treatment plan adherence and compliance Weekly case conference with team— patient knowledge increases compliance Utilization reports and data www.hemoalliance.org 2009 TO PATIENTS Uninsured care Compassionate collections policies TO INSURERS Contract performance analysis Opportunities to reduce costs through clinical studies participation www.hemoalliance.org 2009 TOTAL BILLED CHARGES SUBTOTAL ACTUAL CHARGES IF BILLED AT AWP www.hemoalliance.org SUBTOTAL % COST SAVINGS OF BILLED CHARGES OFF AWP SUBTOTAL ADDITIONAL FREE RESEARCH DRUGS AT AWP VALUE 2009 GRAND TOTAL ACTUAL CHARGES + FREE RESEARCH DRUGS IF BILLED AT AWP GRAND TOTAL % COST SAVINGS OF BILLED CHARGES OFF AWP (including research)