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Affordable and accessible health care that meets patients and families where they are is absolutely critical to those affected by Chiari malformation, syringomyelia and related disorders.



     Individuals who struggle with disorders like Chiari malformation, syringomyelia, dysautonomia, EDS and more tend to have multiple, chronic conditions.  It cannot be stressed how important access to health care is for these individuals.


     Patients with “high-needs” are defined having three or more chronic diseases and at least one functional limitation in day-to-day life— ability to get dressed, go to work, prepare food, etc.[1]  If you come from a family struggling with these disorders, that might sound very familiar…


     Patients with high-needs tend to spend more on health care and wind up with higher out-of-pocket costs.[1] This is due to a number of factors—anything from the actual complexity of their health care needs and other social and economic factors such as employment status and housing.[2,3]  

   Individuals with high-needs—including patients affected by Chiari, syringomyelia, dysautonomia, EDS and more— are not all the same. They “are ethnically diverse, male and female, rural and urban, and their health and personal histories” are very different.[4]. This means, it will take a lot of coordination with our representatives to appropriately address these issues.


1. Hayes SL, Salzberg CA, McCarthy D, Radley DC, Abrams MK, Shah T, Anderson GF, High-Need, High-Cost Patients: Who Are They and How Do They Use Health Care? A Population-Based Comparison of Demographics Health Care Use, and Expenditures. The Commonwealth Fund, August 2016.​

2. Center for Health Care Strategies. Super-Utilizer Summit: Common Themes from Innovative Complex Care Management Programs. October 2013.
3. Gawande A. The Hot Spotters. The New Yorker. Jan 24, 2011.
4. The Peterson Center on Healthcare. Issue Brief: Improving Healthcare for High-Need Patients. 2019. < https://petersonhealthcare.org/issue-brief-improving-healthcare-high-need-patients>