Hemophilia 2009. Improving quality of life …until a cure…through L ower mortality I mproved outcomes F ewer hospitalizations E ducated independent patients

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


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


State-of-the-art medical treatment for persons with hemophilia through the life span

Education Research Outreach Model of comprehensive care for chronic

disease


Clinical

Research

Pharmacy


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


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


Recognition of bleeding episodes

Early versus late treatment

Replacement of clotting protein

Appropriate intervention to prevent complications


Prophylaxis -- ⇩ bleeding episodes

Enhanced infusion protocol - ⇩ effects of bleeding

“On demand” therapy – treat each bleed episode


Lyophilized Factor VIII produced by recombinant technology


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


HIV

HEP B and C

Parvo Virus

CJD (Creutzfeldt-Jakob Disease)


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


Provide education for disease management Promote healthy development consistent

with disease Provide support for normalcy within

community Provide supportive network for families


Clinical

Research

Pharmacy


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


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


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.


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


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


TO PATIENTS Uninsured care Compassionate collections policiesTO INSURERS Contract performance analysis Opportunities to reduce costs through

clinical studies participation


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)


Documents

Hemophilia 2009. Improving quality of life …until a cure…through L ower mortality I mproved outcomes F ewer hospitalizations E ducated independent patients