POLICY, PARTNERSHIPS & ADVOCACY
Our policy work seeks to build effective healthcare services and systems
including clinical care, workforce, surveillance, outreach and education to
address the needs of people and families affected by Sickle Cell Disease
region-wide.
To build sickle cell equity, the PSCRC believes that a regional approach is essential to build and sustain health services for people with rare disorders.
Regionalization requires mutual obligations of many stakeholders. No one agency can address all the needs of people living with rare disorders. These mutual obligations are part of the “Collective Impact Model”.
These obligations recognize and support:
- A common agenda: shared goals and sharing our expertise
- Mutally reinforcing activities – to strengthen services THROUGHOUT and ACROSS our region, not just at our own agency. We are partnering with other rare blood disorders, and other agencies to reach our mutual goals for medically vulnerable individuals.
- Common measurements to track our progress and identify new concerns
- Continual communication
- A ‘backbone’ agency to operationalize the regional network
- Sustainability: efforts to meet today’s needs and plan ahead for the future
Our Successes
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We meet annually with federal Government leaders from the Regional Health and Human Services Offices of Regions VI, VIII, IX and X.
We monitor state policy and provide input to promote access to evidence based SCD clinical services that utilize a team approach, and which integrate community health workers.
The Black Infant Health Program of the California Department of Public Health added sickle cell questions to their home visit assessment. This enhances rapid referral for new parents who have children at risk for SCT and SCD to knowledgeable SCD providers.
We partner with Universities and Health Professional Associations to build to the numbers of students and licensed health care providers who are knowledgeable about evidence-based sickle cell care. Our partners include:
- Charles R. Drew University of Medicine and Science
- Marshall B. Ketchum University School of Physician Assistant Studies
- California Academy of Physician Assistants
- National Association of Hispanic Nurses
The Hemostasis Utilization Group Studies (HUGS) added Sickle Cell to their traditional hemophilia research portfolio, to build the knowledge base about burden of illness and cost of care. HUGS’ first pilot SCD cohort study examines cost, quality of life and burden of illness for patients/families who obtain care at several Sickle Cell Centers in the US, and uses validated survey instruments, enhancing scientific robustness of the findings.
