Guaranteed Healthcare

All Tracy Pierce wanted was to be given a chance to fight his cancer. His insurance coverage wouldn’t even give him that.

 This article originally appeared in the October 2007 issue of Registered Nurse.

It’s one thing to lose someone after an unsuccessful battle against cancer. It’s quite another to lose someone who was never even given the barest of chances to fight.

Unfortunately, Julie Pierce knows the exquisite anger and pain of the latter. Pierce’s 37-year-old husband, Tracy, died in January 2006 of kidney cancer after nearly two years of trying in vain to get his health insurance to cover treatments his oncologist ordered. Instead of receiving round after round of chemotherapy, Tracy Pierce only received page after page of denial letters.

“We have recommended to your employer’s benefit plan that it not be covered because the medication does not fall within the guidelines of your plan,” reads one November 2005 letter denying him Avastin. It reads similarly to many other letters refusing to cover the costs of various treatments, including Tarceva, Thalomid, a bone marrow transplant, and alpha-b2 interferon injections. The Pierces appealed the decisions, even going so far as to plead their case at an in-person meeting with the board of trustees that ultimately controlled her benefits, but were still turned down.

“He should have had the right to live,” said Julie Pierce, who lives with her 15-year-old son, also named Tracy, in Mission, a city near Kansas City, Kansas. “My purpose is to have Tracy’s memory live on, and make sure it doesn’t happen to anyone else.”

Pierce has done just that, sharing her husband’s story so that the public can better understand the human casualties of a for-profit healthcare industry. The couple first went public about Tracy with a local TV news station, then Pierce appeared in Michael Moore’s acclaimed documentary, SiCKO, that was released this summer. On Sept. 28, she will lead and speak at a candlelight vigil for Tracy (whom she called Big Tracy) in Washington, D.C. to draw attention to the need for single-payer healthcare for all American residents while their son (whom she calls Little Tracy) leads a simultaneous candlelight vigil back home in Kansas.

Her long journey from mother and wife, to widow, and now to outspoken healthcare advocate started in 2004 when, just a day before his 36th birthday, Tracy was admitted to the hospital after doctors conducted an emergency MRI and “found a mass” on his left kidney. Tracy, who stood 6 feet 1 inch and weighed about 220 pounds, had been taking antibiotics for what everyone thought was a minor urinary tract infection, but nobody ever suspected cancer. He was a union carpenter in Kansas City and helped build convention centers, hotels, and other commercial buildings. He rarely ever missed a day of work.

Julie had been working since 1997 as the department assistant to the director of critical care at St. Joseph Medical Center, one of the main hospitals in Kansas City. The family received their health insurance through her, since carpentry work was sometimes sporadic and he didn’t always get the minimum number of work hours he needed to hold onto health coverage.   

The couple had been sweethearts since their senior year at Bishop Hogan High School in Kansas City, where they’d both grown up. They’d gotten married, settled down, had a son, and bought a home. When Tracy got sick, Julie had actually been preparing to start nursing school. Now Tracy had renal cell carcinoma.

The doctors immediately operated and removed the cancer from Tracy’s kidney. “They got all they could see, but unfortunately some was in the lymph nodes,” remembers Pierce. “And the doctors said we ‘needed to get on top of this.’”

The first runaround with their insurance came when the couple tried to consult a Kansas University Medical Center oncologist recommended by a doctor at Julie’s hospital. She learned that the medical center was not an in-network hospital. But when she and Tracy made the trip to another oncologist in Missouri that their insurance supposedly would accept, they were rejected again. Since they had made the long drive, they paid the $325 of pocket. Eventually, they ended up with a Kansas University Medical Center oncologist, Dr. Peter Van Veldhuizen, the very same center their insurance originally said was not in their network.

Van Veldhuizen – the Pierces affectionately called him “Dr. Van” – prescribed the cancer drug Tarceva for Tracy, but their insurer denied it. He did receive approval for an interleukin infusion in September 2004, but a variety of other drugs and treatments Dr. Van tried to get preauthorized through the Pierces’ insurance wouldn’t pass muster with the insurance company.

Pierce was livid. She had faithfully paid $405 every paycheck for health insurance and now it was doing Tracy no good.

Meanwhile, Pierce said that Tracy was getting no real cancer treatment and was on Oxycontin and Dilaudid for his worsening pain. CAT scans showed his cancer had spread to his liver, lungs, adrenal gland, renal cavity, and brain. “He’s getting nothing,” she said. “We were wasting time.”  

The Pierces appealed every denial multiple times, but only received multiple denials to their appeals. Running out of options, Dr. Van suggested in April 2005 that Tracy receive a bone marrow transplant to save his life. At first their insurance denied the authorization they needed to test whether Tracy’s two half brothers could be donors, but eventually granted permission for the work ups to be done. When the results came back that Tracy’s youngest brother was a perfect match, Pierce said that was the first time she had seen Tracy really happy in more than a year.

“We were ecstatic,” recalled Pierce. “When we kept getting denied, he would just go into like a depression, thinking, ‘Why me? I’m a good person. Isn’t my life valuable to anybody?’”

Their joy over the bone marrow prospects was short lived, however. After Dr. Van put in the paperwork to get the transplant approved, the insurance company denied it.

Around this time, Pierce said she received a letter that read that her employer, St. Joseph Medical Center, had denied the claim – which confused her because she had always thought their claims and appeals were being rejected by some faceless powers-that-be with her insurance company and swept into a giant bureaucratic black hole. She had never been able to figure out where the buck really stopped. After some digging, she learned that since her employer’s health insurance plan was self-funded, it was actually her hospital’s board of trustees that had final say on claims and appeals.

Coventry Health Care of Kansas said it is merely a third-party service provider that administers the health insurance plan of Carondelet Health, of which St. Joseph Medical Center is part, and referred questions to Carondelet. According to Larry Wheeler of Coventry’s communications department, the hospital system defines its own benefit guidelines and reviews and decides all appeals.

Carondelet refused to answer questions about Tracy's case.

The Pierces immediately sought to plead their case to the board, a meeting they got on May 11, 2005. They brought along their 27-page appeal letter from Dr. Van and argued with the group, but to no avail. The board would not budge. Pierce said she stormed out of the room that day, convinced that the board would have decided differently if it weren’t for elitism and racism against Tracy, a black man.

They briefly entertained the idea of paying for the transplant surgery out of their own pocket, but Kansas University Medical Center needed $250,000 up front to even consider it. That kind of money was out of their reach.

According to Pierce, when Tracy’s cancer spread to his brain, he did receive radiation for seven days but by then, everything was too little, too late. When Tracy went into the hospital after Christmas 2005, Dr. Van told Pierce there was nothing else they could do and that they should prepare for Tracy’s death within three weeks.

“Then I’m taking him home,” Pierce remembered saying. The insurance company did approve hospice care, and for the next couple of weeks, Pierce’s sole mission was to stay with Tracy in their bedroom and make sure he felt as little pain as possible. Even that was a challenge.

On Jan. 12, they submitted a request for morphine lozenges, since Tracy couldn’t swallow very well and the idea was that he could suck on them. The approval finally came six days later. But Tracy couldn’t take them because he died that day, Jan. 18.

“They kept telling us that he was going to die,” said Pierce. “But I didn’t really do anything to get ready. That was like admitting he was going to die.”

After her husband’s death, Pierce went into deep shock and basically secluded herself in the house for almost a year. She reduced her work hours to the bare minimum to – What else? – keep health insurance for herself and Little Tracy.

In March 2006, Jim Flink, the Channel 9 news reporter who had followed their case from the beginning, called to say that the filmmaker Michael Moore was interested in speaking to her for a documentary he was making on the health insurance industry. She agreed, and the film crew came out to Kansas and spent the whole day taping. After they left, she said they would call about once a month to check in with her, but for the next year, she and her son were alone with their grief.

She didn’t leave the house except for work and to visit Tracy’s grave at the cemetery. She didn’t answer the phone. She’d come home and go to the bedroom and just lie there. Little Tracy would retreat into his bedroom and play video games.

What finally pushed Pierce and her son out of their self-imposed isolation was the release of Moore’s movie, SiCKO. They flew to New York City for the premiere, testified before Congress, and met other people who had been treated badly by the health insurance industry. Pierce found new inspiration and strength to fight as a healthcare advocate.

“I wasn’t alone anymore,” she said. “I was with people who knew what I was going through. I felt like we had a purpose and what we were doing was right.”

Pierce started living again. She still works at her hospital job, but also travels around the country to speak about her husband’s struggle to get medical care. Another SiCKO patient, Donna Smith, started a group called American Patients for Universal Health Care, and Pierce sits as vice chair. She said she even started driving the pearl white Cadillac de Ville that she insisted Tracy splurge on when he realized he couldn’t work anymore. For more than a year after Tracy died, she had made payments on the car, but couldn’t bear to drive it.

Besides fighting for the health of all Americans, Pierce is still fighting for those she loves dearest. Little Tracy has a 50-50 chance that he carries the gene that caused his father’s illness, so Pierce would like to get him tested. When her son was just a child, he actually had kidney stones and required an MRI and ultrasound of his kidneys. Doctors had asked his parents at the time whether the boy had any family history of kidney disease, and they had replied no. But given Tracy’s cancer, Pierce worries about her son’s future. “I would like to know,” she said.

Not surprisingly, the two-part test is not covered by Pierce’s insurance. It costs $1000, but they must travel to Maryland because the test can only be done at the Johns Hopkins medical system. The total outlay would cost thousands of dollars which Pierce can’t afford. Fortunately, when Pierce attended the 2007 CNA/NNOC House of Delegates in September, nurses one night collected more than $6000 in donations for Little Tracy to get tested. “I was so overwhelmed that in one hour, a roomful of women and men who don’t know me would give that much money to get my son tested,” said Pierce. A week after the conference, she had already contacted Johns Hopkins to fill out the paperwork to set up the test.           

Pierce is also looking into finding an attorney to represent Tracy’s case in the hopes of holding someone with the hospital or insurance company accountable.

“They killed my husband,” she said. “I promised him that I would not let this go.” 

Lucia Hwang is editor of Registered Nurse.

Update: The day before Thanksgiving, the Pierces received Tracy Jr.'s test results from Johns Hopkins. Tracy Jr. does not have the gene that caused his father's fatal cancer.