Syn cing chronic disease advocacy sykes

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  • 05/01/12
  • Syn cing chronic disease advocacy sykes

    1. 1. SYNChronicity 2012SYNCing Chronic Disease Advocacy withState Healthcare Reform Implementation
    2. 2. Patient Group Advocacy - Health CareReform-Specialty TiersJames Sykes, MPHAdvocacy ManagerHealthHIV2000 S Street, NWWashington, DC 20009
    3. 3. Session Outline• Declaration on Patient-Centered Health Care: Five Principles• Issue Background/History – PPACA, EHB, Specialty Tiers• Mobilization of Patient Groups/Education• Outcome
    4. 4. • March 23, 2010 -PPACA signed into law• September 14, 2011 – Delaware Gov. Markell signed SB 137 authorizing Health Commission Study on Specialty Tiers• December 16, 2011 – HHS released EHB bulletin
    5. 5. •March 01, 2012 – Summary of findingsdue to the Delaware Health CareCommission•March 12, 2012 - Coalition Letterquantifying the impact on specific patientgroups sent to the Health CareCommission•March 15, 2012 – Report due to theGeneral Assembly
    6. 6. • Principles of Patient-Centered Healthcare:• Respect, Choice and Empowerment, Patient Involvement in Health Policy, Access and Support, Information.• Mobilization of Patient Groups in Delaware:• U.S. Pain Foundation, American Autoimmune Related Diseases Association, Inc.,
    7. 7. Arthritis Foundation, Delaware NursesAssociation, HealthHIV, Lupus ResearchInstitute National Coalition, NationalHemophilia Foundation – Delaware ValleyChapter, National Multiple SclerosisSociety – Delaware Chapter•Each patient group participated inproviding input, perspectives, impactstatements.
    8. 8. • Dec. 9, 2011 – Patient groups provide comments, testimony, and input to inform Commission report at meeting of the Delaware Health Care Commission• Jan. 31, 2012 - Draft sign-on letters to the Commission demonstrating impact and reiterating opposition to Specialty Tiers• Feb. 1, 2012 – Patient groups provide input and comment at meeting of Delaware Health Care Commission• March 15, 2012 - Draft report “Specialty-Tier Prescription Drugs” submitted.
    9. 9. • http://www.nytimes.com/2012/04/13/health
    10. 10. Contact Information James E. Sykes, MPHjames@healthhiv.org (202) 507 -4742

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