POLICY, PARTNERSHIPS & ADVOCACY

Health Policy refers to the “…Decisions, plans, and actions that are undertaken to achieve specific health care goals within a society.”

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.

PSCRC policy to build sickle cell equity believes that a regional approach is essential to build and sustain health services for people with rare disorders. Why?

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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Building Government Attention to SCD:

We meet annually with federal Government leaders from the Regional Health and Human Services Offices of Regions VI, VIII, IX and X.

  • One success is the Month long series of four weekly webinars on SCD in September 2018, sponsored by the Offices of the Assistant Secretary of Health in Regions VIII, IX and X. These webinars were broadcast throughout the US; nationally renowned SC leaders presented.
  • Another success was invitations to present on SCD at the Northwest Regional and US Conferences on Refugee and Immigrant Health in 2017.

Identifying Families Early:

The Black Infant Health Program of the California Department of Public Health added sickle cell questions to to their home visit assessment. This results in referring new parents who have children at risk for SCT and SCD to knowledgeable SCD providers.

Workforce and Outreach:

The National Association of Hispanic Nurses – Los Angeles Chapter (NAHN-LA) adopted Sickle Cell as a priority, educating thousands from multi-cultural communities about SCD signs/symtoms and where to get care. PSCRC leaders educated NAHN-LA, NAHN-Orange County (CA), and NAHN-AZ leaders and members about SCD. The National Office of the NAHN recognizes the importance of SCD; PSCRC leaders and NAHN-LA have presented on SCD at NAHN-National Conferences.

Building Knowledge:

Annual meetings of the lead clinicians and community based organizations in our region. They gain updates, share best practices, and together address complex cases.

Research:

The Hemostasis Utilization Group Studies (HUGS) added Sickle Cell research to their traditional hemophilia research portfolio, to build the knowledge base about burden of illness and cost of care.

LA County DHS:

We successfully partnered with the Los Angeles County Department of Health Services to develop a new Adult Sickle Cell Center at the Martin Luther King, Jr. Outpatient Center in 2016. This clinic uses an advance practice medical home mode, and has received national attention.

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This website is partially supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) as part of an award totaling $347,436.00. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by HRSA, HHS or the U.S. Government.

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