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