WE BELIEVE IN CHANGE
Sickle cell disease is the most common inherited blood disorder in the United States. The complications of sickle cell disease – pain, infections, damage to organs (kidneys, lungs, brain), anemia – can be managed with proper medical care. However, such medical care is not always available for people with the disease. Adults with sickle cell disease in particular very often have a hard time finding healthcare providers who are well-prepared to take care of them. This can lead to serious complications that could have been prevented, including early death. The Pacific Sickle Cell Regional Collaborative strives to change that by making provider training about sickle cell disease more available; testing new models for delivering care in clinics and hospitals; and testing different approaches that encourage providers to use proven therapies and guidelines for sickle cell disease care. We include the voice of people with sickle cell disease, their families and their community supporters as we address all of our goals.
We are one of four regional grantees in the United States
The Pacific Sickle Cell Regional Collaborative is funded through a grant from the U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau, Sickle Cell Disease Treatment and Demonstration Program. We are further assisted by the National Institute for Children’s Health Quality.
To meet the goals of the HRSA Cooperative Agreement, the Pacific Region Collaborative will: Work to ensure that all patients in our region are included in this plan by implementing initiatives that will improve access to care for both children and adults with SCD; increase provider capacity through education and piloting new models of sustainability for both pediatric and adult clinics and hospitals, and; continue to expand its data collection and processing to document regional improvements in access, capacity, and outcomes through education, genetic counseling, and documentation of optimal use of guidelines and medications, such as hydroxyurea, as clinical performance measurements.