Ian Pearl has fought for his life every day of his 37 years. Confined to a wheelchair and hooked to a breathing tube, the muscular dystrophy victim refuses to give up.
But his insurance company already has.
Legally barred from discriminating against individuals who submit large claims, the New York-based insurer simply canceled lines of coverage altogether in entire states to avoid paying high-cost claims like Mr. Pearl’s.
In an e-mail, one Guardian Life Insurance Co. executive called high-cost patients such as Mr. Pearl “dogs” that the company could “get rid of.”
A federal court quickly ruled that the company’s actions were legal, so on Dec. 1, barring an order by the federal Department of Health and Human Services, Mr. Pearl will lose his benefits.
His medical treatment costs $1 million a year.
Most of that is for ‘round the clock, in-home nursing care - for operation of his ventilator, hourly breathing treatments and continuous intravenous medication.
(Corrected paragraph:) A Guardian spokesman said policies such as Mr. Pearl’s - which offered unlimited home nursing - had simply become too expensive for new small-business customers to buy, and that even Medicaid and Medicare do not cover 24-hour home nursing. His parents, Warren and Susan Pearl of Fort Lauderdale, Fla., said their health insurance premiums had risen over the years to $3,700 a month.
As a last resort, Mr. Pearl would be admitted to a state hospital under Medicaid. But the Pearls consider that a death sentence.
“Ian would be lucky, or unlucky, to survive more than a matter of weeks or months,” Mrs. Pearl said. “One-on-one skilled nursing is essential.”
Her husband, 60, a wealthy businessman, said the couple have enough savings to pay for their son’s care for a few years, and after that, they could mortgage the family’s home.
The Pearls’ younger son, Matthew, is the best-selling author of “The Last Dickens,” a novel published this year by Random House.
“Ian and Matt spend hours on the phone discussing story lines. Matt uses Ian to bounce ideas off of,” Mrs. Pearl said.
Ian Pearl became the first wheelchair-bound pupil to be mainstreamed in the Broward County elementary schools, and he was elected president of his high school class at University School of Nova Southeastern University in Fort Lauderdale.
He has Type II spinal muscular atrophy - which often kills victims in infancy. He grew to adulthood only to suffer respiratory arrest at 19. He has required a tracheal tube ever since.