1256 - Financial Assistance Needs of Adults with Spina Bifida

Friday, February 20, 2026

5:00 PM - 6:30 PM AST

Presenting Author(s)

RC

Rachel Casper, BS

Medical Student
Lake Erie College of Osteopathic Medicine
West Newton, Pennsylvania, United States

Co-Author(s)

SI

Sara Izzo, BA

Coordinator - Client Assistance Fund
UPMC Mercy Adult Spina Bifida Clinic
Pittsburgh, Pennsylvania, United States

Corresponding Author(s)

BD

Brad Dicianno, MD

Professor and Vice Chair for Research
University of Pittsburgh
Pittsburgh, Pennsylvania, United States

Submitter(s)

RC

Rachel Casper, BS

Lake Erie College of Osteopathic Medicine
West Newton, Pennsylvania, United States

Objectives: Of the 166,000 individuals in the United States living with Spina Bifida (SB), many experience challenges with education and achieving financial stability along with increased healthcare utilization and medical costs. The UPMC Adult SB Clinic provides a “client assistance fund” (CAF) program to assist patients with out-of-pocket medical costs. The study aims to delineate the financial assistance needs of adults with SB. The authors hypothesized that patients in underrepresented groups and those with myelomeningocele would utilize more funding.

Design: Patients applied for the CAF program during their annual visit from July 1, 2023 - June 30, 2025 by completing an Income Attestation Form. Approval requirements included Pennsylvania residency and a taxable household income less than 3 times the poverty threshold. Reimbursements were maximized at $650 annually. Costs were categorized by social determinant of health (transportation, room & board/utilities, medical costs, food insecurity, childcare, and “other”). Descriptive statistics characterized the sample. Mann-Whitney (gender) and Kruskal Wallis (SB sub-phenotype, race) tests were used to assess whether reimbursement amounts were associated with demographic factors or SB sub-phenotype.

Results: In year 1, 71/149 (47.7%) patients applied and 49/71 (69.0%) were approved, and 14/27 (51.9%) were insured through Medicare. In year 2, 72/155 (46.5%) patients applied and 52/72 (72.2%) were approved, and 18/29 (62.1%) were insured through Medicare. Thirty-nine unique individuals (mean: 41.7 +/- 14 years of age) utilized the funding. Patients with lipomeningocele were reimbursed significantly more than patients with myelomeningocele (p< 0.001). No difference was found when evaluating the association between reimbursement and patient race or gender. Medical costs, including bowel and bladder supplies and copays, accounted for 95% of expenses.

Conclusions: CAF utilization patterns highlight the need for financial support for adults with SB, emphasizing those with less severe sub-phenotypes. Common financial barriers include costs of medical supplies and copays.