syn cing chronic disease advocacy sykes

SYNChronicity 2012

SYNCing Chronic Disease Advocacy withState Healthcare Reform Implementation

Patient Group Advocacy - Health Care Reform-Specialty Tiers

James 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 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

• 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 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.

• 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.

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

Contact Information

James E. Sykes, MPHjames@healthhiv.org

(202) 507 -4742