Dominic Cotton advocates for rare disease patient protocols after son's emergency incident

The Connecticut State Legislature's Public Health Committee held a public hearing on February 27, 2025, focusing on the protocols for managing patients with rare diseases. The session featured testimony from Dominic Cotton, a rare disease advocate and father of a child diagnosed with a rare metabolic disorder known as SCAD.

Mr. Cotton shared his personal experience navigating the healthcare system for his son, who cannot break down fats and requires a specific treatment protocol during metabolic crises. He recounted a distressing incident at Bridgeport Hospital where medical staff failed to follow the established protocol, leading to a critical situation for his son. Despite having provided a detailed protocol letter from a geneticist, the attending physician disregarded it, resulting in a near-fatal episode for the child. This incident highlighted the challenges faced by families advocating for their children's unique medical needs in emergency situations.

During his testimony, Cotton emphasized the importance of adhering to established medical protocols for rare diseases, particularly in emergency settings. He pointed out that while general medical protocols are necessary, they must be flexible enough to accommodate the specific needs of patients with rare conditions. His advocacy aims to ensure that healthcare providers recognize and respect these protocols to prevent harm to vulnerable patients.

Senator Anwar acknowledged the significance of Cotton's testimony, noting that it sheds light on the need for healthcare systems to balance protocol adherence with individualized patient care. He expressed concern over a trend in healthcare that prioritizes efficiency and cost-saving measures over comprehensive patient management, particularly for those with complex medical conditions.

The hearing concluded with a call for greater awareness and understanding among healthcare providers regarding the unique challenges faced by patients with rare diseases. The committee's discussions underscored the necessity for ongoing dialogue between medical professionals and families to ensure that all patients receive appropriate and timely care in emergencies.