An 11-year-old Big Island boy and his parents are locked in a high-stakes fight over access to specialized mainland care after his doctors urged them to seek help on the continent. Paul Gugger, who has Ehlers‑Danlos syndrome along with other complex medical issues, lives with a feeding tube and, his family says, has been hospitalized repeatedly for severe pain and vomiting. A string of insurance denials has the family juggling possible appeals, steep out-of-pocket costs and an unclear timeline for getting him seen.
Why Children's Hospital Colorado?
Children's Hospital Colorado operates a Special Care Clinic that includes a dedicated Ehlers‑Danlos program, bringing together genetics, gastroenterology, cardiology and nutritional support for young patients with complicated connective tissue disorders. The hospital describes the clinic as a multidisciplinary, team-based setup that can use telehealth when it fits a case, but stresses in-person visits when a child needs multiple specialists to weigh in at once. That coordinated model is exactly what Paul's local physicians are recommending, according to Children's Hospital Colorado.
Family's appeals and denials
Doctors on the island submitted a referral to the Colorado team, and the family's providers say the mainland clinic deemed the visit medically necessary. Hawaii Medical Service Association, however, denied coverage for the out-of-network mainland care. Citing HIPAA protections, HMSA told reporters it could not comment on the specifics of Paul's case, leaving his mother, Shelby Gugger, to describe what she calls "continuous denials" and growing medical bills. The family estimates they would face about $20,000 in out-of-pocket costs if they pay for the specialized evaluation themselves, according to Hawaii News Now.
What the insurer offers
Public materials from HMSA highlight a Care Access Assistance Program that can help with airfare when members must fly to another island for a specialist, and the insurer promotes local HMSA Centers where members can get one-on-one help with benefits and claims. The setup appears aimed mainly at easing inter-island travel rather than underwriting trips to the continental U.S., a gap that can leave families on the Big Island facing hefty expenses when the needed care is off-island and out-of-network. For details on those programs and locations, see HMSA.
Legal and policy context
The Guggers' dispute is unfolding as HMSA's prior authorization and arbitration practices draw broader statewide scrutiny. A 2025 court decision changed who can seek damages over coverage denials instead of being steered into arbitration, giving some patients new ways to challenge decisions when internal appeals come up short. Advocates and working groups have also pushed for prior authorization rules that are easier to understand and faster to navigate, according to Hawaii News Now.
Next steps for the family
For now, the Guggers say they plan to keep pursuing internal appeals with HMSA while also exploring their options with state regulators, all as they continue managing Paul's care close to home. The Hawaii Department of Commerce and Consumer Affairs offers an online complaint system and guidance for insurance members who have gone through all levels of plan appeals, a resource families can turn to as they weigh their choices. In the meantime, Paul's local doctors say they will continue pushing for the referral and coordinating his treatment on the island as best they can.
