Maternal and Child Health Initiatives in Sickle Cell Disease Welcome to the first meeting of the FY 2005-2008 SCD grantees. I have been looking forward to meeting you all and more importantly have you all meet each other. We are particularly pleased that some of your partners were able to attend since much of the success of this program is the ability sustain partnerships. The SCD community faces many challenges such as poor access to quality health care, lack of coordinated services, lack of trained subspecialists, babies lost to follow-up, carriers undetected or not knowledgeable about the impact of being a carrier, lack of a medical home, frequent visits to the emergency departments have the ability to bring richness to the MCHB Sickle Cell Disease and Newborn Screening Follow-up program and to face the challenge of ensuring that individuals diagnosed with SCD or are carriers of SCD receive the quality of care that they so justly deserve. We know that for much of the SCD population the scales of service are not balanced and we hope that this grant program, building upon the work of the previous grantees, will be the begin to address these issues. American Public Health Association Annual Meeting November 5, 2007 Marie Y. Mann, M.D., M.P.H. Health Resources and Services Administration (HRSA) Maternal and Child Health Bureau (MCHB)

Health Resources and Services Administration (HRSA) Expands access to comprehensive, high quality, culturally competent health care to medically underserved populations, including: Low income Uninsured Isolated Vulnerable Special Needs Populations …Background about our agency. HRSA as a part of the DHHS is known as the ACCESS agency. Its mission is to move toward assuring 100% access to comprehensive quality health care to: low income, uninsured, isolated, vulnerable and special needs populations and their affected families. MCH initiatives in SCD

Maternal and Child Health Bureau In partnership with States, communities, public-private partners, and families: Provide national leadership for maternal and child health Promote environment that supports maternal and child health Strengthen health infrastructure and systems of care Eliminate health barriers and disparities Assure quality of care HRSA consists of 5 bureaus, one of which is the MCHB. Its mission is a broad one: to MCH initiatives in SCD

Maternal and Child Health Bureau The MCH population includes all America’s pregnant women, infants, children, adolescents, and their families - including women of reproductive age, fathers, and children with special health care needs. MCH initiatives in SCD

Division of Children with Special Health Care Needs President’s New Freedom Initiative (2001) Responsibility for developing community-based systems of care for children with special health care needs Healthy People 2010 Objective 16-23 “Increase the proportion of States and territories that have service systems for children with special health care needs.” MCH initiatives in SCD

Division of Children with Special Health Care Needs Core Indicators: Family professional partnership Access to care through medical home Adequate insurance for children and youth Early and continuous screening Inclusive community systems Adolescent transition to adulthood and independence MCH initiatives in SCD

Division of Children with Special Health Care Needs National Survey of Children with Special Health Care Needs (2001) – System Components Family Partnership and Satisfaction Status: 57% Access to Medical Home Status: 51% Access to Affordable Insurance Status: 60% Early and Continuous Screening Status: 52% Easy Access to Community Based Services Status: 74% Services to Transition to Adulthood Status: 6% MCH initiatives in SCD

Division of Children with Special Health Care Needs Two legislatively mandated sickle cell disease initiatives: Sickle Cell and Newborn Screening Program- Support community-based models of delivering SCD and SCD carrier counseling and follow-up and linkage to newborn screening and comprehensive system of care. Sickle Cell Disease Treatment Demonstration Program -Develop and establish mechanisms to enhance the prevention and treatment of sickle cell disease through the coordination of service delivery; genetic counseling and testing; bundling of technical services; training of health professionals; and other related efforts. MCH initiatives in SCD

Sickle Cell Disease and Newborn Screening Program Purpose enhance access to comprehensive care, including education and counseling, for newborns diagnosed with sickle cell disease (SCD) or as carriers, and their families develop partnerships among State Title V and State newborn screening programs, local community-based SCD support organizations, comprehensive SCD treatment centers, and community-based clinicians MCH initiatives in SCD

Sickle Cell Disease Newborn Screening Program $4 million appropriated annually since 2002 17 demonstration projects in 14 states and the District of Columbia with grant awards of $185,000 per year for 3 years One National Coordinating and Evaluating Center funded at $750,000 per year New funding competition in 2008 MCH initiatives in SCD

Sickle Cell Disease Newborn Screening National Coordinating and Evaluation Center (NCEC) Cooperative agreement with Sickle Cell Disease Association of America (SCDAA) to support the 17 grantees: Technical Assistance/Information Exchange Data Collection and Evaluation SCD Educational Materials Development Hemoglobinopthy Counselor Certification Partnership Building MCH initiatives in SCD

Sickle Cell Disease Treatment Demonstration Program (SCDTDP) Authorized under Section 712 (c) of the American Jobs Creation Act of 2004, Public Law 108-357 Purpose - Increase access to and the capacity/capabilities of primary health care providers to provide coordinated and comprehensive services for individuals and families with sickle cell disease and those who are carriers. MCH initiatives in SCD

SCDTDP In Fiscal Year 2007 $1.88 million awarded: 4 Regional Sickle Cell Disease (SCD) Treatment Demonstration Networks (TDN) funded @ $320,000 annually for 4 years National Coordinating Center MCH initiatives in SCD

Treatment Demonstration Networks Health Services, Inc - Montgomery AL Roseland Christian Health Ministries - Chicago IL  Stedman-Wade Health Services – Wade NC University of Cincinnati - Cincinnati OH MCH initiatives in SCD

Treatment Demonstration Networks - Activities Establishing coordinated care networks of primary care clinicians, specialty sickle cell providers, and community-based SCD support organizations. Establishing medical homes for SCD patients Creating SCD patient registries Implementing quality improvement measures Providing education and training to patients, families, and their health care providers MCH initiatives in SCD

National Coordinating Center Research Triangle Institute International (RTI) in partnership with Meharry Medical College & SCDAA serves as the National Coordinating Center through a contract. MCH initiatives in SCD

NCC-RTI Activities Technical assistance/Information exchange Educational materials review and development Identification of performance measures and quality indicators Collection of data and analysis Identification of promising best practices and well-defined guidelines relative to prevention and treatment of SCD Development of partnerships and strategies for sustaining them MCH initiatives in SCD

Regional Genetic Service and Newborn Screening Collaboratives HRSA/MCHB funds 7 Regional Genetic Service and Newborn Screening Collaboratives and a National Coordinating Center to: Improve access to quality care and appropriate genetic expertise and information for individuals with heritable disorders and their families Enhance communication and collaboration among public health, individuals, families, primary care providers, and genetic medicine and other subspecialty providers MCH initiatives in SCD

Regional Collaboratives and SCD Community-based outreach projects Pilot project: to study effectiveness of intervention modules for sickle cell disease (Georgia, North Carolina, Alabama, Florida) Utilizing partnerships with HRSA/MCHB funded sickle cell disease projects MCH initiatives in SCD

National Newborn Screening and Genetics Resource Center (NNSGRC) National Newborn Screening Information System (NNSIS) – designed to provide a secure, Internet based, real-time, information collection and reporting system for capturing state and territorial newborn screening information. http://genes-r-us.uthscsa.edu http://www2.uthscsa.edu/nnsis/ MCH initiatives in SCD

Marie Mann Thank You! 301-443-1080 mmann@hrsa.gov MCH initiatives in SCD