PA: unable get transplant as disability $164 mo over MA limit.

[NRSKarenRN, BSN, RN]

Bloomfield, PA man needing transplant is put on hold due to lack of insurance

Wednesday, April 17, 2002

By Monica L. Haynes, Post-Gazette Staff Writer

http://www.post-gazette.com/healthscience/20020417transplant0417p3.asp

If Joseph Palmiere only had a heart ... that worked properly. He wouldn't need to take three kinds of medicine a day. He wouldn't have to quit working. He wouldn't need $270,000 for a heart transplant.

"I'm 31 going on 60," says Joseph Palmiere, who needs a heart transplant. However, the disability check of the uninsured man from Bloomfield is $164 a month too much for him to qualify for public health insurance and a chance to be placed on the list for a transplant. (Martha Rial, Post-Gazette)

But as the poem states, "If wishes were horses then beggars would ride." The reality is that Palmiere is a 31-year-old unemployed, uninsured man from Bloomfield whose disability check is $164 a month too much for him to qualify for public health insurance.

Under those circumstances, Palmiere cannot be placed on the list for a heart transplant.

His father, Nick Palmiere, has not only seen the film, "John Q" -- the Denzel Washington movie about a desperate father who doesn't have enough insurance to cover his son's heart transplant -- he's living it.

"It's uncommon for us to turn people away because of insurance, but it does happen," said Dr. Dennis McNamara, Joseph Palmiere's doctor and associate professor of medicine and director of the heart failure section at UPMC Presbyterian Hospital.

"This whole thing is beyond my comprehension," said Iris Palmiere-Hurka, Joseph Palmiere's mother. "We live in this great country and there's nothing for Joe and, I'm sure, a million Joes that are out there."

According to Kaiser Family Foundation, in the year 2000 there were 15.2 million uninsured adult males under the age of 65.

Tammy Tokarczyk, a clinical heart transplant coordinator for UPMC, said the hospital would love to put Palmiere on the list, but that it's not as simple as giving him a heart.

"Who's going to pay for the meds after the transplant?" Tokarczyk asked. "How can we justify using this donor organ for somebody who can't afford the meds?"

Even if Palmiere had the money and a heart became available, he'd still need an estimated $1,000 to $3,000 a month for post-transplant medications, including anti-rejection drugs.

"No heart transplant candidates have come off their medications without suffering rejection and ultimately death," Tokarczyk said. "If we transplant him anyway and he can't take his meds, there would be no good outcome."

Since learning in the fall of 2000 that Palmiere needs a new heart, his family and friends have raised about $23,000 via raffles, dances and other events. It goes into a fund administered by the National Transplant Assistance Fund to pay for medicines and other expenses related to his illness. The fund also receives $100 to $200 a month from the cans placed on the countertops of Bloomfield businesses.

In another 15 months, Palmiere's Medicare coverage will kick in and take care of the cost of a transplant.

"Our phone rings all day long with patients from all over the country who either have a gap in their insurance or no insurance," Merkle said. The NTAF establishes about 20 new patient funds per month. It's handling 800 cases this year so far and has assisted with fund-raising for 1,500 patients since it began the task in 1985.

A study released this year by the Kaiser Family Foundation shows there were 38 million Americans under age 65 without insurance, with 64 percent of them being low-income. Nearly all low-income uninsured children are covered by a combination of Medicaid and the Children's Health Insurance Program known as CHIP.

Seated in the living room of the home he shares with his girlfriend Rachel Thorp and her two children, the affable young man doesn't look like a guy whose heart is failing him.

"I'm 31 going on 60," Palmiere said. "I feel like an old man right now. I'm fatigued. I could sleep all day and wake up as if I hadn't been asleep."

He spends most of his days sitting in the house, unable to walk from the kitchen to the living room without getting short of breath, said his father who lives nearby.

"I'd rather have two years of an active life than 20 years of this," the young Palmiere said. "I've accepted the fact that I'm not going to be an old man." It's a statement that hits his father like a sucker punch.

Palmiere was 6 weeks old when he was diagnosed with aortic stenosis, a disorder that narrows or obstructs the aortic valve opening, which in turn reduces the amount of blood that flows to the body.

Doctors said the condition was serious but not life and death.

"We knew in the future there'd be surgery," said Iris Palmiere-Hurka, who's divorced from Joseph's father. "But I just put that in the back of my mind."

Joseph Palmiere underwent his first heart surgery at age 9. His last heart surgery took place in 1995. He had become so ill, his weight dropped from his normal 170 pounds to 120 pounds.

"Everyone thought I had AIDS," he said.

Doctors discovered an infection had damaged the mechanical aortic valve implanted when Palmiere was 15. They replaced the old valve with one made of human tissue, but told his parents he might not make it.

"That was their job but I did not want to hear it," Palmiere-Hurka said. "How I deal with things is, I try not to think about them. I rely on my faith and strength in God to get me through."

Palmiere recovered from the surgery and returned to his job.

In early fall of 2000, he was working part-time as a produce manager and full-time at a medical facility making guide wires for catheters. He gave up the part-time job, he said, because it was too strenuous. In November 2000, his doctor told him he'd have to quit his full-time job as well.

Palmiere applied for and received public assistance, including medical coverage and food stamps. He informed the state Department of Public Welfare that he'd be applying for disability benefits and approximately how much those benefits would be.

No one, he said, informed him that that $894 a month would disqualify him for public assistance medical benefits.

"I found out through the pharmacist," Palmiere said. "I went to get my drugs and he said, 'You're no longer covered.' "

Unfortunately, said Tokarczyk, Palmiere's disability income disqualifies him. "That's the rule -- what can we do?" she asks. "Can we lobby, can we change [the rules]? I don't know."

McNamara said sometimes patients who are too sick to work must wait for government-sponsored medical coverage. If any become very ill and need an immediate transplant, it could pose a huge dilemma for a hospital.

"I can say we haven't had to take someone who is dying and had to deny them a transplant because of that issue," McNamara said. If the need for a transplant becomes urgent, he said, everything would be done to get the costs underwritten.

However, as insurance reimbursements decrease and hospitals face tighter and tighter budgets, health-care professionals worry about the possibility of not being able to provide that care.

As a child, Palmiere was often treated at Children's Hospital, even when the family did not have health insurance, his mother said.

"They never sent us a bill, never made us feel inferior. That has to be done for adults," Palmiere-Hurka said.

Despite his condition, Palmiere had a pretty normal childhood. The only thing his doctor nixed as too stressful was Little League Baseball, his mother said.

"[Joseph] would just nag about it," she recalled. "He didn't understand."

McNamara said he thinks there needs to be a global strategy for our health care system.

"If a transplant is going to be part of our delivery system, then it has to be a realistic option [for everyone], not just for the people who can pay for it," he said.

Merkle said the movie "John Q" is entertainment for sure, but it has a message.

"The message is, there are gaps. Many people fall within the gaps," Merkle said.

The NTAF assisted the movie's producers in finding real transplant cases for a documentary that will be included when the film comes out on DVD in a couple of months, she said.

"I think there ought to be a safety net or program," Nick Palmiere said. "We're the richest country and we have people starving to death, people without insurance. Congress has the best of everything. We're not asking for a free ride. We just want help when we're in the middle."

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At 9 p.m. April 25, there will be a concert benefiting the Joseph Palmiere Transplant Fund at Nick's Fat City on the South Side. Admission is $6. Doors open at 8 p.m.

The National Transplant Assistance Fund, 3475 West Chester Pike, Newtown Square, Newtown, PA 19073. http://www.transplantfund.org/ or by phone at 1-800-642-8399.