Transcript Slide 1

Hemophilia
2008
Improving quality of life…until a
cure…through
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
2008
Comprehensive Hemophilia Care in U. S.
• 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
2008
Mission of the HTC
• 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
2008
Comprehensive Care Team
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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
2008
Role of Hemophilia Treatment
Centers
• 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
2008
HTC Services
• Clinical
• Research
• Pharmacy
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2008
Hemophilia Treatment Milestones
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
2008
Clinical Services
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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
2008
Goals of Treatment
• Recognition of bleeding episodes
• Early versus late treatment
• Replacement of clotting protein
• Appropriate intervention to prevent
complications
www.hemoalliance.org
2008
Treatment Methods
• Prophylaxis -- ⇩ bleeding episodes
• Enhanced infusion protocol - ⇩ effects of bleeding
• “On demand” therapy – treat each bleed episode
www.hemoalliance.org
2008
Lyophilized Factor VIII produced by recombinant technology
www.hemoalliance.org
2008
Inhibitor
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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
2008
Viral Exposure
• HIV
• HEP B and C
• Parvo Virus
• CJD (Creutzfeldt-Jakob Disease)
www.hemoalliance.org
2008
Therapies for Hemophilia patients with
Inhibitors
• 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
2008
GOALS of Hemophilia Centers
• 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
2008
HTC Services
• Clinical
• Research
• Pharmacy
www.hemoalliance.org
2008
Research Services
• Clinical research studies
– Improved products for treatment -- Not experimental
– New technology for delivery of care
– Viral safety improvements
• Outcomes research
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Joint outcome study
Radiological evaluation
Hemophilia Utilization Group Study
Quality of Life
Satisfaction surveys
Radiosynoviorthesis
www.hemoalliance.org
2008
Benefits of Service Integration
• 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
2008
HTC PHARMACY MISSION
• 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
2008
INTEGRATION
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
2008
INTEGRATION
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
2008
LOW COST PROVIDER
DRUG PRICING METHODOLOGY
• Cost based vs. % mark-up basis
• Allows for product use based on therapeutic
benefits, not profit
• As pharmacy volume increases, overhead
decreases, price per unit decreases
• “threshold pricing”—highest utilization
patients caps profits for HTC
www.hemoalliance.org
2008
FINANCIAL RELATIONSHIPS
TO PATIENTS
• Uninsured care
• Compassionate collections policies
TO INSURERS
• Contract performance analysis
• Opportunities to reduce costs through
clinical studies participation
www.hemoalliance.org
2008
Overview of ECONOMIC VALUE brought by
340B Outpatient Hemophilia Program
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
2008
www.hemoalliance.org
GRAND TOTAL
ACTUAL CHARGES +
FREE RESEARCH
DRUGS IF BILLED AT
AWP
GRAND TOTAL
% COST
SAVINGS OF
BILLED
CHARGES OFF
AWP (including
research)