Florida man with muscular dystrophy inspires proposed law that would prevent insurance companies from discriminating against disabled people

From The Miami Herald:

Ian Pearl (pictured) once feared a tracheal tube inserted into his throat would render him voiceless.

But he got his voice back -- and then some.

He's using it now to bring attention to the issue of discriminatory health insurance practices against the disabled.

The 37-year-old, who lives in Southwest Ranches, is the inspiration for "Ian's Law,'' legislation being introduced by two New York state legislators that would require insurance companies to get approval from the state before dropping coverage plans for existing clients.

"I fight for my life each day, surviving is a 24/7 job for me,'' said Pearl, who was born with muscular dystrophy. "This experience was literally another fight for my life.''

In and out of hospitals his entire life, Pearl has lived the last 18 years on a ventilator hooked to a tracheal tube. Although the procedure is known for helping those with muscular dystrophy live longer, it can come with a cost: the need for 24-hour medical attention.

The insurance policy purchased by Ian's father in 1981 provided for such care.

But Guardian Life Insurance, which is based in New York, notified the Pearls that it was dropping Ian's coverage in December as part of a companywide restructuring of its insurance policies.

This past year, Pearl's medical expenses totaled almost $1 million.

A memo unearthed by Pearl's attorney referred to costly cases likePearl's as "dogs'' the company needed to rid itself of.

With his insurance set to expire in weeks, Pearl and his family mobilized to draw attention to their case.

In August, Pearl spoke at a healthcare reform town hall meeting held by state legislators in Tamarac, and also penned an opinion piece for The Huffington Post -- a popular political blog.

His mother, Susan Pearl, traveled to Washington, D.C., to lobby lawmakers and spoke before a crowd of 500 at a healthcare reform rally. Soon the family's story was picked up on the front page of The Washington Times and aired on CNN and MSNBC.

``This isn't a partisan issue,'' Susan Pearl told The Miami Herald. ``This is a human issue. We may not be lawmakers, but we're here to help put a face to the issue of access.''

Soon after, Guardian's CEO Dennis Manning contacted the family to apologize for the memo. The company also agreed to restore Ian's coverage and that of two other families under similar situations, even if it still planned on moving forward with eliminating coverage for others.

``We believe that the people we insure should be treated equitably and [we] are confident that we acted legally, in full compliance with state insurance regulation, and underscore that at no time did we cancel coverage for an entire block of policies in order to discontinue coverage for any particular individual,'' Guardian spokesman Richard Jones wrote in a statement.

While Guardian will continue to cover Ian Pearl, the family remains committed to their newfound role of healthcare reform advocates.

Pearl's parents traveled to New York last week to help state Sens. Eric Schneiderman and Neil Breslin announce the bill's introduction. If approved by New York's State Assembly,, ``Ian's Law'' would require insurance companies to get prior approval from the state insurance department before discontinuing a line of coverage.

The bill's sponsors are hoping it serves as a model for a nationallaw.

``It's really just a way to make sure this massive loophole is closed,'' Schneiderman said in a phone interview with The Miami Herald. ``We want to make sure these companies are doing what they're suppose to do.''

Pearl has never let his health challenges stand in the way of being an active voice in the community. He was the first student who used a wheelchair to enroll in mainstream Broward County classrooms. His mother still keeps the yellowing newspaper clips heralding her son's various accomplishments.

He was elected class president by his high school peers at the University School in Davie, and also selected as the poster child for the local Muscular Dystrophy Association.

"Ian was an advocate before he even knew what the word meant,'' Susan Pearl said. "This is who he has always been, he's always used his voice to fight the good fight.''