Docstoc

Slide 1 - The Hemophilia Alliance

Document Sample
Slide 1 - The Hemophilia Alliance Powered By Docstoc
					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




                              2008
www.hemoalliance.org
          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
  • 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
   •   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
   • 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

                 • Clinical

                 • Research

                 • Pharmacy

                              2008
www.hemoalliance.org
    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
  • 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
      • Recognition of bleeding episodes

      • Early versus late treatment

      • Replacement of clotting protein

      • Appropriate intervention to prevent
        complications

                               2008
www.hemoalliance.org
                       Treatment Methods
   • Prophylaxis -- ⇩ bleeding episodes

   • Enhanced infusion protocol - ⇩ effects of bleeding

   • “On demand” therapy – treat each bleed episode




                              2008
www.hemoalliance.org
     Lyophilized Factor VIII produced by recombinant technology




                                    2008
www.hemoalliance.org
                        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
   • HIV

   • HEP B and C

   • Parvo Virus

   • CJD (Creutzfeldt-Jakob Disease)

                             2008
www.hemoalliance.org
            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
   • 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 Services

                 • Clinical

                 • Research

                 • Pharmacy

                              2008
www.hemoalliance.org
                       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
   • 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

   • 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

   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
                       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

   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

   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


                                                                                            GRAND TOTAL
                                       SUBTOTAL
                                                                       GRAND TOTAL          % COST
                                       % COST        SUBTOTAL
                   SUBTOTAL ACTUAL                                     ACTUAL CHARGES +     SAVINGS OF
   TOTAL BILLED                        SAVINGS OF    ADDITIONAL FREE
                   CHARGES IF BILLED                                   FREE RESEARCH        BILLED
   CHARGES                             BILLED        RESEARCH DRUGS
                   AT AWP                                              DRUGS IF BILLED AT   CHARGES OFF
                                       CHARGES       AT AWP VALUE
                                                                       AWP                  AWP (including
                                       OFF AWP
                                                                                            research)




                                                    2008
www.hemoalliance.org

				
DOCUMENT INFO