Ian Malone inspired patient’s bill of rights

EVERETT — Ian Riley Malone, a nationally recognized symbol of the need for health care reform, died Saturday from complications of a birth injury. He was 4 years old.

"Ian’s short life was a constant battle to improve the system for those who will come after him. We will sorely miss his beautiful smile and ready laugh, and are sorry his journey had to end so soon," Ian’s parents, Dylan and Christine Malone, said in a statement.

Brain damaged at birth on Sept. 4, 1999, in Everett, Ian’s condition was diagnosed as hypoxic ischemic encephalopathy. He couldn’t swallow and had to have an attendant constantly monitor his breathing and a surgically implanted feeding tube.

Ian’s parents brought him to their north Everett home from the hospital at 3 months of age with the aid of home nursing care.

The couple became involved in the campaign for patients’ rights after Dylan Malone’s health insurance provider, Aetna U.S. Health Care, denied a request for 16-hour-a-day medical care for Ian, even though his pediatrician, Dr. Katherine Runyon, wrote to Aetna in support of the at-home nursing care.

Dylan Malone is employed by The Herald.

After the Malones were turned down by Aetna three times, including a final external review that they were not allowed to attend, they turned to the media for help. Vice President Al Gore took up the Malones’ cause, and Ian became a poster boy for patients’ rights.

Gore’s intervention restored the life-saving treatment.

After a successful trip to Olympia to lobby for a Patients’ Bill of Rights, Ian was given the pen that Gov. Gary Locke used to sign the bill. Ian then became involved in the fight in the Congress to improve health care after being featured in national television campaigns aimed at passing a federal version of the state bill.

In 2002, Dylan Malone made an unsuccessful bid for public office, running for representative in the 38th Legislative District. Malone is employed by The Herald.

A memorial service for Ian will be at 1 p.m. Saturday at Purdy and Walters with Cassidy on Pacific Avenue in Everett.

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