HB 6920, An Act Concerning Patient-Specific Emergency Medical Care Protocols For Persons With A Rare Disease Or Special Health Care Needs

TESTIMONY OF THE CONNECTICUT HOSPITAL ASSOCIATION
SUBMITTED TO THE PUBLIC HEALTH COMMITTEE

Wednesday, February 26, 2025

The Connecticut Hospital Association (CHA) appreciates this opportunity to submit testimony concerning HB 6920, An Act Concerning Patient-Specific Emergency Medical Care Protocols For Persons With A Rare Disease Or Special Health Care Needs. CHA opposes the bill.

Connecticut hospitals and health systems care for patients, strengthen the state’s economy, and support vulnerable communities across the state. Every day, they work to improve healthcare access, affordability, and health equity. Even as they face ongoing challenges, hospitals provide world-class care to everyone who walks through their doors, regardless of their ability to pay. Hospitals also support an exemplary workforce as the largest collective employer in the state, contribute significantly to the state’s economy, and invest in their communities addressing social drivers of health.

HB 6920 seeks to compel every emergency department provider at a hospital, and every emergency medical services provider, to follow unvetted, external protocols when caring for a person with a rare disease or special healthcare needs. This would mean that an emergency provider would be required to follow care protocols that were made outside of the emergency provider’s control, by other providers at a different time, and potentially in a different place or state where licensure or credentialing laws and practices may be different or where certain services – including gender-affirming or reproductive healthcare – have been outlawed.

Such protocols would necessarily conflict with the standard of care, federal laws including the Emergency Treatment and Labor Act (commonly known as EMTALA), state and federal drug laws and practices, approved hospital policies including those required by the state or federal laws, strict EMS rules relating to medical control and direction, end-of-life laws, and self-determination laws.

There is no legally appropriate or ethically acceptable way to require emergency care providers to be subject to and required to follow a patient’s other healthcare providers’ protocols. If passed, the law would cause massive confusion that would interfere with care delivery and would likely be subject to legal challenge.

The ability for patients to consent to care, decline care, or plan in advance for eventualities for their care are basic parts of patient-provider interactions for all patients, not exclusively for patients with rare diseases or special needs.

If there are specific concerns regarding emergency care services for people with rare diseases and special needs, CHA stands ready to work with the Committee to discuss and study the best ways to address those concerns in a manner that does not conflict with or violate existing emergency care professional and ethical responsibilities.

Thank you for your consideration of our position. For additional information, contact CHA Government Relations at (203) 294-7301.