Heart-rending choice

By Marshall Allen

Tuesday, Oct. 24, 2006 | 7:13 a.m.

Staying in Nevada is a death sentence for 32-year-old Troy Shaw.

He is in intensive care at Summerlin Hospital Medical Center with a failing heart.

He's feeling better this day than the previous. The breathing tube has been removed from his throat. He can speak. Until 2001 he was healthy and productive, most recently working as a cook's helper at the Suncoast. Now he knows the medical routines too well. In the past year, his condition has declined and he's been steadily in and out of the hospital while getting by on Social Security.

Shaw's enlarged heart is too weak to sufficiently pump blood through his body. It's a genetic defect that's killed several family members when they were young, and Shaw knows he could well be next. Doctors give Shaw 50-50 odds of making it another year.

His only hope is a heart transplant, but they are not performed in the state. Nevadans must go elsewhere for heart transplants, often to California. So two years ago Shaw visited UCLA Medical Center, where doctors deemed him a strong transplant candidate.

There's a catch. Nevada Medicaid, his insurance provider, doesn't pay for heart transplants for adults. If Shaw were under 21, he would be covered.

California's version of the same insurance, called Medi-Cal, does pay for adult heart transplants.

So this is Shaw's predicament: He's either is too old or lives in the wrong state to get the insurance coverage he needs for the life-saving procedure.

Shaw can't do anything about his age, but there is the prospect of moving to California - and hoping he can stay alive long enough to be enrolled in Medi-Cal.

This leaves LeRoy Shaw, the young man's father, facing a high-stakes quandary. He is a retired parole officer and neither he, nor anyone else in the family, can afford to move to California with Troy Shaw. And even if they could find the money, there's no assurance Shaw would be admitted to UCLA - or that he would ever receive a new heart. LeRoy Shaw weighs the options while his son lingers on the brink of death.

Troy Shaw remains remarkably positive, although he said it's frustrating and unfair that he would have to leave Nevada to get a new heart.

"I'm just upset that Medicaid's not going to pay for it," he said. "I just still have to keep my hopes up and cross my fingers that I'll get a new heart."

Shaw's plight speaks to the brutal realities of distributing limited health care resources to many people. It also highlights the health care gap between the rich and poor. Many medical resources are distributed according to who can pay for them.

LeRoy Shaw is "extremely disappointed" that Nevada does not take better care of its people. The state, he said, has grown to the point where there's no excuse not to bolster the Medicaid coverage.

"I've been here 16 years," Shaw said. "I've worked here. I've retired here. I've been a good citizen, as well as Troy. Now we find that when there is a medical emergency, this state is not here to help us."

Medicaid is a federal and state partnership to provide health insurance to low-income citizens. The federal government reimburses states for half of their Medicaid expenses, but gives them discretion about the level of care they provide.

Charles Duarte, Nevada Medicaid's administrator, holds the lives of people such as Troy Shaw in his hands. He is limited by the $1.3 billion budget approved by the Legislature to pay for health care for about 200,000 people. That's about $6,500 per person each year on average. UCLA officials said a heart transplant could cost about $200,000.

The limited Nevada Medicaid resources require cold decisions, sometimes sacrificing individual needs for the sake of the group.

"We provide a lot of things to a lot of people but not everything for everyone, unfortunately," Duarte said.

Medicaid coverage varies by state. For people under 21, the federal government requires states to provide any medical treatment necessary, including transplants. But states determine their own policies for people over 21.

The heart transplant policy can be changed if it doesn't require a larger budget, Duarte said. Amendments that would increase the budget require legislative approval. An attempt was made by the 1995 Legislature to include heart transplants for adults in Medicaid coverage, but the proposal never made it out of committee.

Duarte said it's rare to get requests for heart transplants because doctors know they are not covered by Medicaid.

"Obviously, we'd like to do everything for everybody," Duarte said. "You don't enjoy the types of situations where people get a life threatening illness, and you don't cover that service."

LeRoy Shaw finds it "extremely frustrating" that saving his son's life comes down to money. "While they're executing their discretion, my son and others are literally dying," he said.

Troy Shaw's doctors are also frustrated. Cardiologist Charles Ruggeroli has been treating Shaw since his ailment was discovered in 2001. A normal heart fills with blood, then pushes about 70 percent of it throughout the body, leaving the remainder to prime the vessel to fill again. Shaw's heart squeezes out about 15 percent of the blood.

Most heart patients can be treated with medication; so there are fewer needs for transplants than there were years ago, Ruggeroli said. But in recent months, Shaw's heart hasn't responded well to medicine or outpatient care so he is hospitalized more often.

Shaw's case is discouraging, Ruggeroli said, because he's so young and "we don't have anything else to offer him."

Shehryar Saghir, Shaw's primary care physician, said the case is particularly emotional for him because "I know that whatever I'm doing is transient, and each time I discharge him he'll come back."

The doctors are urging Shaw's family to take him to California, which they say is his only chance to live. LeRoy Shaw is disgusted because the only solution he ever hears is to "head south on the I-15." The family can't afford to move to California, much less pay health care costs for the 30 days before Medi-Cal kicks in, he said.

"There's no guarantees whatsoever, and it's a helluva risk to be taking," LeRoy Shaw said.

If the family thought it could make ends meet in Los Angeles - not just paying Troy's medical costs for a month, but also cover living expenses as well - the first order of business would be in hiring an air ambulance to UCLA, at a cost of about $5,000, to confirm that Troy Shaw is still eligible as a patient and heart-transplant recipient.

Troy Shaw said he wants other people waiting for transplants to know "they're not alone."

"We are together in one group, as a family," he said. "We are not alone in this. I'm not alone, and you shouldn't be either."

Nationwide, 2,862 people are waiting for heart transplants, including 750 patients who have been waiting more than five years.