About the Florida Partnership for Access to Sickle Cell Services (PASS) Program
Prior to receiving funding from Health Resources and Services Administration (HRSA), infants with sickle cell trait and their families residing in the Southeast Florida Region had limited resources and many educational and community needs: the notification process for infants newly identified with sickle cell trait was fragmented; the system of care lacked a central extended outreach organizing force; families of newly diagnosed infants needed to be screened and also needed genetic counseling; and there was no registry to document families with sickle cell trait.
Today, the situation is much improved. The Florida Partnership for Access to Sickle Cell Services (PASS) Program has made possible genetic screenings for immediate family members of newborns identified through the Newborn Screening Program. It has also provided for social services, outreach activities, and referrals.
The PASS Program began in 2005, when SBHD first received funding through HRSA’s Sickle Cell Disease and Newborn Screening Program grant. Since that time, a multicultural and multidisciplinary Advisory Board reflective of true private and public partnerships between local healthcare agencies, community-based organizations, private foundations, and government agencies was established. Families in the six County area identified through the State’s Newborn Screening Program have received follow-up services including extended family screenings, hemoglobinopathy counseling, education, and referral to a medical home and the first sickle cell hemoglobinopathy registry in the State of Florida has been developed.
Currently, the Sickle Cell Registry currently contains over 7,000 records of individuals with a sickle cell hemoglobinopathy. With renewed funding, the PASS Program will continue to enhance the State’s Title V newborn notification program as well as provide outreach, extended family testing, psychosocial support, genetic counseling, education and referrals to a medical home.
The Florida PASS Program will serve Florida’s Title V Agency’s Southeast Region. For this Region, the Newborn Screening Program identified 116 newborns confirmed with SCD between May 2005 and November 2006. Between May 2005 and November 2007, there were 7,352 cases of sickle cell trait. The Southeast Region is a geographically large area that encompasses 6,363 square miles of sprawling urban and large rural land segments. The population is multiracial and multiethnic, and includes some 3.4 million people with young and growing immigrant communities that are among the most economically distressed and medically underserved in the State of Florida. These people need to be identified and entered into culturally appropriate care to increase their knowledge of the genetic contribution to health and disease.
The Florida PASS Program has become a model program of sickle cell disease support services that includes sickle cell trait screening, notification, follow-up, extended family testing, outreach, psychosocial support, genetic counseling, and education for identified individuals and families. As the Program moves forward, it will expand its services to enhance communication among stakeholders, improve health and increase life expectancy for newborns and their families who test positive for sickle cell disease, trait and/or other hemoglobinopathies. The Florida PASS Program will create a stronger continuum of care for Florida’s Southeast Region.