Paying to live

Paying to live
Organ donations save lives, but for many, the price never goes away

By PAM ADAMS
Journal Star
Last update Sep 14, 2008 @ 12:22 PM

Here, at Julis Cooper's beauty shop along NE Monroe in Peoria, it's not hard to find women who work three jobs to make ends meet.

It's a dingy storefront with bright lights and the easy-going conversations of long relationships and regular Thursday night appointments. Cooper washes the perm from one woman's hair while a little girl sits under the dryer. Two more women sit in the row of chairs against the wall, waiting their turn at the shampoo stall.

The women constantly tease Cooper about working three jobs. But when she comes back with a shrug and "A woman's got to do what a woman's got to do," they know what she means.

One customer has just sent her son off to college after home-schooling him for 12 years. Another has

not only worked three jobs for 15 years, she's also been taking college classes part time. And she's proud to announce she's finally five hours from a bachelor's degree.

"I work three jobs because I don't want nobody else to support my kids," she says.

Cooper, who received a kidney transplant in 1987, outdoes her. "I work to live."

Literally, that's true, says Donna Jenkins, transplant social worker for OSF Saint Francis Medical Center. At 46, and ineligible for Medicare or Medicaid, Cooper's income and benefits pay for the anti-rejection drugs she needs to live.

People who need transplants may endure long years on waiting lists and, in the case of kidney transplants, years on dialysis, before a compatible organ becomes available. They may deal with the financial hardship of paying for transplant surgery, which can cost, on average, $100,000 for a kidney. But that's just the beginning. The organ may have been donated, but the cost to keep it lasts a lifetime.

"In the beginning, we tell people to expect medications to cost $3,500 to $5,000 a month," Jenkins says. "But it goes down after that. As time goes, their immunosuppression needs aren't as great."

Even people with "good" health insurance have difficulty paying for the anti-rejection drugs transplant patients must take daily for the rest of their lives. Premiums are going up, benefits decreasing and insurance co-payments getting higher. But for people who aren't wealthy enough to pay for the medicine or poor enough to qualify for public assistance, the problems triple, at least in Cooper's case, to three jobs.

She's a part-time beautician, a part-time nurse's aide and a full-time bus driver at Parc. Income from the beauty shop and the nurse's aide job covers everyday living expenses. The full-time job provides the insurance that helps pay for the costly immunosuppression drugs she needs to keep her kidney functioning and her body from rejecting it.

"After paying my monthly premiums and the co-pays for my medicine, there's not too much left," Cooper says, referring to her full-time job.

She works Monday through Friday at Parc, two nights a week and all day Saturdays at the beauty shop. She's on call to fill in at nursing homes, often pulling 12-hour shifts on weekends, in addition to working at the beauty shop. During her weeklong vacation from Parc in August, she worked at a nursing home.

"Sometimes I wonder if this was a blessing or a curse," she says of the kidney. "It was a blessing to get it, but it's been a curse trying to keep it. That's why I work three jobs."

Her morality question is common among transplant patients, says Jackie Hancock, president of the National Foundation for Transplants, a Florida-based organization that helps patients raise money for transplant-related costs not covered by insurance or public assistance.

"The expenses are a huge factor," he says, "and it's really tricky, because it becomes almost a vicious cycle of supply and demand."

With some types of transplants, such as liver transplants, Hancock says many transplant centers are faced with the dilemma of selecting prospective transplantees from waiting lists based on whether they can afford anti-rejection medications after the transplant. "What they have to decide is this: 'We've got a perfectly good liver, why should we put it in someone we know will not be able to maintain it financially?' "

Public assistance for post-operative needs, by the way of Medicare and Medicaid, is different for transplant patients depending on the type of organ they receive. Heart transplant patients, for example, must wait two years to qualify for Medicare coverage. Kidney transplant patients, who make up the vast majority of the nation's transplantees, qualify for Medicare assistance for anti-rejection medications immediately after surgery. But there's a hitch.

Unless they're older than 65 or eligible for other forms of public assistance, such as Medicaid, the Medicare coverage for anti-rejection drugs only lasts three years.

If a person has maintained private health insurance, that coverage might kick back in on the 37th month, says Dr. Ben Pflederer, a kidney specialist who sees dialysis and post-operative transplant patients.

"For patients who don't have other private insurance, and that's a large number, it's a huge burden," he says. "They have this kidney, they're doing much better than they were on dialysis, now they've got many thousands in drug expenses and no way to cover it. It's common. ... The vast majority of kidney transplant patients are under 65."

Many patients, often with the help of medical social workers, are able to patch together what they need through state programs, pharmaceutical assistance programs and/or volunteer fundraising groups such as the Central Illinois Memorial Kidney Fund. But those who don't, risk losing the kidney and ending up back on dialysis.

Ironically, Medicare coverage resumes once they're back on dialysis. The federal government will even pay for a second transplant. Pflederer recalls seeing a patient go back on dialysis this summer after losing a transplanted kidney because he couldn't afford anti-rejection drugs.

The problem, as Pflederer sees it, is that expanding coverage of anti-rejection drugs for kidney transplants is more cost effective than paying for dialysis treatment once someone loses a transplanted kidney.

Dialysis costs the Medicare program about $70,000 a patient annually, according to the National Kidney Foundation, while the cost of anti-rejection drugs ranges from $10,000 to $20,000 a year. Lawmakers, including U.S. Sen. Dick Durbin, D-Ill., have introduced bills in Congress to expand anti-rejection drug coverage for kidney transplant patients, but the bills haven't gone anywhere.

While her children were young, Cooper worked, but she was still eligible for Medicaid, which helped cover her costs. But once the children grew up, she lost the Medicaid coverage. At one point, she almost lost the kidney.

She had been splitting doses of the medications, trying to stretch it, because, even with public assistance at the time, she couldn't afford the costs.

Over the years, she's gone through the frustrations of trying to get insurance despite a pre-existing condition, she's dealt with red tape and bureaucracies and tried to keep the bills paid. Even now, she regularly skips the monthly blood work-ups required to make sure her kidney is functioning properly. She can't always afford the $50 fee.

So when the customers at the beauty shop tell her she's got to stop working so hard and live her life, she shrugs again and gives them a half smile.

"That's what I'm doing, living my life," she says. "I work to live."

Pam Adams can be reached at 686-3245 or padams@pjstar.com.

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