Upload
adrienne-provance
View
221
Download
2
Tags:
Embed Size (px)
Citation preview
Hemophilia
2009
2009
Improving quality of life…until a cure…through
Lower mortality
Improved outcomes
Fewer hospitalizations
Educated independent patients
2000, Soucie, et al Mortality in hemophilia1998, Nuss et al, Medical care in hemophilia
www.hemoalliance.org
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
2009
*1984 Article on Benefits of Comprehensive Care Center*1984 Article on Benefits of Comprehensive Care Center
www.hemoalliance.org
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
2009www.hemoalliance.org
Physicians Nurses Physical Therapist Social Worker Pharmacists Reimbursement counselors Administrative staff Adjunct staff: Orthopedics, dental,
genetics, coagulation lab, infectious disease, hepatology, radiology
2009www.hemoalliance.org
State-of-the-art medical treatment for persons with hemophilia through the life span
Education Research Outreach Model of comprehensive care for chronic
disease
2009www.hemoalliance.org
Clinical
Research
Pharmacy
2009www.hemoalliance.org
1890s - clotting link identified1910s - mixed blood studies1930s - normal plasma “corrects” defect1940s - transfusion therapy1950s - fresh frozen plasma1960s - cryprecipitate developed1970s - lyophilized product & home use1980s/1990s - advances in product safety &
purity
2009www.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
Recognition of bleeding episodes
Early versus late treatment
Replacement of clotting protein
Appropriate intervention to prevent complications
2009www.hemoalliance.org
Prophylaxis -- ⇩ bleeding episodes
Enhanced infusion protocol - ⇩ effects of bleeding
“On demand” therapy – treat each bleed episode
2009www.hemoalliance.org
Lyophilized Factor VIII produced by recombinant technology
2009www.hemoalliance.org
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
2009www.hemoalliance.org
HIV
HEP B and C
Parvo Virus
CJD (Creutzfeldt-Jakob Disease)
2009www.hemoalliance.org
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
2009www.hemoalliance.org
Provide education for disease management Promote healthy development consistent
with disease Provide support for normalcy within
community Provide supportive network for families
2009www.hemoalliance.org
Clinical
Research
Pharmacy
2009www.hemoalliance.org
Clinical research studies◦ Improved products for treatment -- Not
experimental◦ New technology for delivery of care◦ Viral safety improvements
Outcomes research◦ Joint outcome study◦ Radiological evaluation◦ Hemophilia Utilization Group Study◦ Quality of Life◦ Satisfaction surveys◦ Radiosynoviorthesis
2009www.hemoalliance.org
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
2009www.hemoalliance.org
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.
2009www.hemoalliance.org
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
2009www.hemoalliance.org
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
2009www.hemoalliance.org
TO PATIENTS Uninsured care Compassionate collections policiesTO INSURERS Contract performance analysis Opportunities to reduce costs through
clinical studies participation
2009www.hemoalliance.org
TOTAL BILLED CHARGES
SUBTOTAL ACTUAL CHARGES IF BILLED AT AWP
SUBTOTAL % COST SAVINGS OF BILLED CHARGES OFF AWP
SUBTOTAL ADDITIONAL FREE RESEARCH DRUGS AT AWP VALUE
GRAND TOTAL ACTUAL CHARGES + FREE RESEARCH DRUGS IF BILLED AT AWP
GRAND TOTAL % COST SAVINGS OF BILLED CHARGES OFF AWP (including research)
2009www.hemoalliance.org