Healthcare Transition: A Care Cliff for Pediatric Onset Conditions
June 20 @ 4:00 pm - 5:00 pm
@ Rayburn 2044
We held an afternoon happy hour briefing on Thursday, June 20th at 4:00, where patients, providers, and experts discussed the barriers faced by pediatric patients in the complex care community transitioning to the adult health care system.
This congressional briefing provided an overview of the various challenges experienced by patients with pediatric onset conditions as they transition to the adult healthcare system. The event brought in experts, providers, and patients to analyze the scope of the problem and explained the need for HHS to provide an analysis on what the agency is undertaking and/or funding to support and facilitate continuity of care for medically complex and/or special needs adolescents who are aging out of the pediatric care system.
Moderator
Sara Struwe, MPA
President and Chief Executive Officer Spina Bifida Association
Sara Struwe earned her Bachelor of Public Administration from the University of Mississippi in 1984. In 2001, she earned a Master’s in Public Administration from the University of Dayton. Ms. Struwe joined the Spina Bifida Association (SBA) in late 2009 as the Chief Operating Officer. In 2014, Ms. Struwe was appointed the SBA’s President and CEO where she led SBA’s efforts to improve the health care for the growing number of adults with Spina Bifida and develop the new Spina Bifida Collaborative Care Network (SBCCN), a system which monitors, tracks and evaluates care provided in Spina Bifida clinics and other health care settings.
Under her direction, SBA has established a new plan to address the health disparity adults with Spina Bifida face. The SBCCN developed the necessary relationships to adequately communicate between the SBA, clinics, health care professionals, people with Spina Bifida and their families, organizations supporting people with Spina Bifida, and SBA Chapters. In addition, the SBCCN works to identify the research needs for the Spina Bifida community.
As the President & CEO of the SBA, her mission has been to further engage the Spina Bifida community in all aspects of the work of the organization. She has focused on volunteer development and engagement in the plans and the work of the organization. Under her direction, organizational volunteer involvement has almost tripled and volunteers advise the organization on every aspect of the organization, and a primary focus has been to involve adults with Spina Bifida in all areas of organizational work—research, clinical care, advocacy, education and support
In 2022, Ms. Struwe conceptualized and started the National Partnership for Pediatric to Adult Care Transition (NPPACT), a multi-disciplinary group of stakeholders committed to advocating for federal programs, investments, and policies, which will help ensure smoother care transitions, including developing and maintaining adult care clinics specifically designed to support adults living with serious, life-threatening, and disabling conditions that were initially diagnosed, treated, and managed in childhood.
Additionally, under her leadership, SBA changed its mission and vision to better reflect community expectations and needs; this was accomplished through the work of volunteers from the Spina Bifida community. SBA conducted qualitative and quantitative research to determine the issues impacting daily life of people with Spina Bifida. This activity resulted in the first patient-developed research agenda for the organization.
Speakers
Annie Kennedy
Chief of Policy, Advocacy, and Patient Engagement EveryLife Foundation for Rare Diseases
A veteran leader in the rare disease patient focused drug development movement, Annie joined the EveryLife Foundation in 2018, where she’s led the Cost of Delayed Diagnosis: A Health Economic Study, the National Economic Burden of Rare Disease study, the development of the ICD Code Roadmap, the Newborn Screening Modernization Roundtable series, and the community-driven Guide to Patient Involvement in Rare Disease Therapy Development. Annie previously held leadership roles at Parent Project Muscular Dystrophy (PPMD) and the Muscular Dystrophy Association (MDA) where she led landmark legislative, regulatory, newborn screening, supporting the clinical and policy transition from pediatrics to adulthood, and access policy efforts. She is a sought-after advisor to patient-centered organizations and initiatives across the nonprofit and government sectors.
Annie’s community roles have included service on the Board of Directors of Cure SMA, the Patient Driven Values in Healthcare Evaluation (PAVE) Steering Committee, the Patient Centered- Core Impact Set (PC-CIS) Steering Committee, the National Health Council’s Valuation Group, the Innovation and Value Initiative (IVI) Patient Advisory Committee, the National Duchenne Newborn Screening Steering Committee, the Institute for Gene Therapies (IGT) Patient Advocacy Advisory Council, a co-lead with IVI Engaging Patients with Rare Disease in Identifying Meaningful Approaches to CER and Value Assessment (PCORI award), the NIH Strategic Planning Working Group on Engaging the Public as Partners in Clinical Research (NexTRAC), Co-Chair of the MD Action Plan “Living With MD” Working Group of the Muscular Dystrophy Coordinating Committee (MDCC, NIH), and as a member of the NIH National Center for Advancing Translational Sciences (NCATS) Advisory Council.
Margaret A. McManus, MHS
President of The National Alliance to Advance Adolescent Health and co-Director of Got Transition/Center for Health Care Transition Improvement
Co-Director of Got Transition, the national resource center on pediatric to adult health care
transition (HCT). With Dr. White, she led the development of the Six Core Elements of Health
Care Transition and corresponding measurement tools, supported numerous transition quality
improvement efforts using the Core Elements, conducted several systematic reviews on HCT
outcomes and measures, and published numerous peer-reviewed articles and reports on transition
workforce recommendations, quality improvement, status of transition preparation in the US, and
transition coding and reimbursement. She has for more than 3 decades directed federal, state,
and private foundation projects on transition, adolescent and young adult health, Medicaid and
managed care, coverage and payment, and public health program and policy development.
Domonique Robinson
Patient Advocate
Erin Teeple, M.D., FACS, FASCRS
Erin Teeple, M.D., is the only surgeon in the United States board-certified in both adult colorectal surgery and pediatric general surgery. She completed her adult colorectal surgery training at Brigham and Women’s Hospital, a Harvard-affiliated hospital in Boston, and her pediatric surgery training at Nemours Children’s Health, a Jefferson-affiliated hospital in Wilmington, DE. She is a skilled and experienced pediatric surgeon with a focus on colorectal transitional care for our patients with congenital and acquired colorectal disease.
As an active committee member in both the American Pediatric Surgical Association and the American Society of Colon and Rectal Surgeons (ASCRS), Dr. Teeple regularly makes contributions to improving transitional care. She has written book chapters is the ASCRS textbook on pediatric colorectal disease, as well as contributions in other important texts, and has numerous peer-reviewed publications, presentations and book chapters in the fields of general pediatric surgery as well as colon and rectal surgery. She was the site principal investigator in an NIH-granted study looking at enhanced recovery after colorectal surgery in the pediatric population.
Dr. Teeple has a particular expertise in children and adults with motility and pelvic floor disorders, as well as inflammatory bowel disease. To bring her skills to Children’s National, she was recruited by Marc Levitt, M.D., in 2022 to direct the Children’s National Colorectal Transition Program in collaboration with MedStar Washington Hospital and Georgetown University Hospital.
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