Download customized treatment - The Hemophilia Alliance

Hemophilia
2008
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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
2008
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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
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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
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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
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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
 Clinical
 Research
 Pharmacy
www.hemoalliance.org
2008
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
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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
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Recognition of bleeding episodes
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Early versus late treatment
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Replacement of clotting protein
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Appropriate intervention to prevent
complications
www.hemoalliance.org
2008
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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
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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
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HIV
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HEP B and C
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Parvo Virus
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CJD (Creutzfeldt-Jakob Disease)
www.hemoalliance.org
2008
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Adequate factor VIII to overwhelm the inhibitor and
maintain an adequate factor VIII level
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Porcine factor VIII
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Designer human-porcine hybrid FVIII molecules
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rFVIIa (NovoSeven)
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FEIBA
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Plasmapheresis
www.hemoalliance.org
2008
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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
 Clinical
 Research
 Pharmacy
www.hemoalliance.org
2008
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Clinical research studies
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Outcomes research
◦ Improved products for treatment -- Not
experimental
◦ New technology for delivery of care
◦ Viral safety improvements
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Joint outcome study
Radiological evaluation
Hemophilia Utilization Group Study
Quality of Life
Satisfaction surveys
Radiosynoviorthesis
www.hemoalliance.org
2008
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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
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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
LOCAL ACCESS
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Immediate treatment—reduces
complications; requires less factor for
treatment
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Reduces ED visits or hospitalization (only
72% of patients on home care)
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Facilitates admissions to local institutions-factor procurement and staff education
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Provides 24/7 delivery throughout region
www.hemoalliance.org
2008
CUSTOMIZED TREATMENT
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Customized dosing based on assay
availability and patient recovery data—
maximum use of resources
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Customized dispensing—contributes to
treatment plan adherence and compliance
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Weekly case conference with team—
patient knowledge increases compliance
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Utilization reports and data
www.hemoalliance.org
2008
DRUG PRICING METHODOLOGY
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Cost based vs. % mark-up basis
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Allows for product use based on therapeutic
benefits, not profit
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As pharmacy volume increases, overhead
decreases, price per unit decreases
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“threshold pricing”—highest utilization
patients caps profits for HTC
www.hemoalliance.org
2008
TO PATIENTS
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Uninsured care
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Compassionate collections policies
TO INSURERS
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Contract performance analysis
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Opportunities to reduce costs through
clinical studies participation
www.hemoalliance.org
2008
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
2008
GRAND TOTAL
ACTUAL CHARGES +
FREE RESEARCH
DRUGS IF BILLED AT
AWP
GRAND TOTAL
% COST
SAVINGS OF
BILLED
CHARGES OFF
AWP (including
research)