Patient Group Advocacy - Health CareReform-Specialty TiersJames Sykes, MPHAdvocacy ManagerHealthHIV2000 S Street, NWWashington, DC 20009
Session Outline• Declaration on Patient-Centered Health Care: Five Principles• Issue Background/History – PPACA, EHB, Specialty Tiers• Mobilization of Patient Groups/Education• Outcome
• 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
•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
• 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.,
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.
• 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.