1. SYNChronicity 2012 SYNCing Chronic Disease Advocacy with State Healthcare Reform Implementation

2. Patient Group Advocacy - Health Care Reform-Specialty Tiers James Sykes, MPH Advocacy Manager HealthHIV 2000 S Street, NW Washington, DC 20009

3. SYNChronicity Session Outline • Declaration on Patient-Centered Health Care: Five Principles • Issue Background/History – PPACA, EHB, Specialty Tiers • Mobilization of Patient Groups/Education • Outcome

4. Patient Group Advocacy – Health PolicyTimeline • 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. Patient Group Advocacy – Health PolicyTimeline • March 01, 2012 – Summary of findings due to the Delaware Health Care Commission • March 12, 2012 - Coalition Letter quantifying the impact on specific patient groups sent to the Health Care Commission • March 15, 2012 – Report due to the General Assembly

6. Patient Group Advocacy – Health Policy • 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. Patient Group Advocacy – Health Policy Arthritis Foundation, Delaware Nurses Association, HealthHIV, Lupus Research Institute National Coalition, National Hemophilia Foundation – Delaware Valley Chapter, National Multiple Sclerosis Society – Delaware Chapter • Each patient group participated in providing input, perspectives, impact statements.

8. Conclusion • 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. SYNChronicity • http://www.nytimes.com/2012/04/13/health/states-seek-to-curb-exorbitant-drug-costs-incurred-by-patients.html?ref=todayspaper

10. SYNChronicity Contact Information James E. Sykes, MPH james@healthhiv.org (202) 507 -4742