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Hemophilia. Improving quality of life …until a cure…through L ower mortality I mproved outcomes F ewer hospitalizations E ducated independent patients. 2000, Soucie, et al Mortality in hemophilia 1998, Nuss et al, Medical care in hemophilia. www.hemoalliance.org.

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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

2008

www.hemoalliance.org


Comprehensive hemophilia care in u s
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

2008

www.hemoalliance.org


Mission of the htc
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

2008

www.hemoalliance.org


Comprehensive care team
Comprehensive Care Team

  • Physicians

  • Nurses

  • Physical Therapist

  • Social Worker

  • Pharmacists

  • Reimbursement counselors

  • Administrative staff

  • Adjunct staff: Orthopedics, dental, genetics, coagulation lab, infectious disease, hepatology, radiology

2008

www.hemoalliance.org


Role of hemophilia treatment centers
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

2008

www.hemoalliance.org


Htc services
HTC Services

  • Clinical

  • Research

  • Pharmacy

2008

www.hemoalliance.org


Hemophilia treatment milestones
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

2008

www.hemoalliance.org


Clinical services
Clinical Services

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

2008

www.hemoalliance.org


Goals of treatment
Goals of Treatment

  • Recognition of bleeding episodes

  • Early versus late treatment

  • Replacement of clotting protein

  • Appropriate intervention to prevent complications

2008

www.hemoalliance.org


Treatment methods
Treatment Methods

  • Prophylaxis -- ⇩ bleeding episodes

  • Enhanced infusion protocol - ⇩ effects of bleeding

  • “On demand” therapy – treat each bleed episode

2008

www.hemoalliance.org



Inhibitor
Inhibitor

  • 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

2008

www.hemoalliance.org


Viral exposure
Viral Exposure

  • HIV

  • HEP B and C

  • Parvo Virus

  • CJD (Creutzfeldt-Jakob Disease)

2008

www.hemoalliance.org


Therapies for hemophilia patients with inhibitors
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

2008

www.hemoalliance.org


Goals of hemophilia centers
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

2008

www.hemoalliance.org


Htc services1
HTC Services

  • Clinical

  • Research

  • Pharmacy

2008

www.hemoalliance.org


Research services
Research Services

  • 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

2008

www.hemoalliance.org


Benefits of service integration
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

2008

www.hemoalliance.org


Htc pharmacy mission
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.

2008

www.hemoalliance.org


Integration
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

2008

www.hemoalliance.org


Integration1
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

2008

www.hemoalliance.org


Low cost provider
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

2008

www.hemoalliance.org


Financial relationships
FINANCIAL RELATIONSHIPS

TO PATIENTS

  • Uninsured care

  • Compassionate collections policies

    TO INSURERS

  • Contract performance analysis

  • Opportunities to reduce costs through clinical studies participation

2008

www.hemoalliance.org


Overview of economic value brought by 340b outpatient hemophilia program
Overview of ECONOMIC VALUE brought by340B Outpatient Hemophilia Program

2008

www.hemoalliance.org


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