Original Source
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Insurer said no, so cancer patient pays for experimental treatment

Victoria Colliver, Chronicle Staff Writer

Saturday, December 15, 2007
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Evanthia Pappas, a Bay Area prosecutor diagnosed on her 37th birthday with a rare, aggressive form of breast cancer, has been offered hope in the form of a clinical trial.
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But this hope, presented by oncologists who specialize in her disease at the University of Texas' famed M.D. Anderson Cancer Center in Houston, comes at a high price: $235,000.
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This particular clinical trial is one of a number of investigational therapies that are unfunded, meaning that it is not sponsored by a drug company, the federal government or any other source that would cover the cost of the treatment. Pappas' health care provider, Kaiser Permanente, has declined to pay for her involvement in the trial.
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The case also raises a larger ethical concern: Should patients have to foot the bill to test an unproven therapy? It also demonstrates an uncomfortable reality in health care - that money can make the difference between life and death.
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Regardless of the answers, Pappas, a Mill Valley resident and Sonoma County deputy district attorney, is scrambling to collect funds, already amassing more than $100,000 from her own savings along with donations from friends, colleagues, family members, the Greek community and even total strangers.
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"If I have a chance to eradicate this cancer, they'll get their $235,000," Pappas said, determined to have a shot at what she and her doctors believe is not only her best chance at survival, but a possible cure.
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Pappas has stage 4 inflammatory breast cancer, an aggressive and insidious disease that spreads quickly and is often difficult to detect.
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Initially, M.D. Anderson's financial officials told Pappas she would have to pay the entire cost of the trial before she could begin. But the hospital gave the green light last week after receiving numerous calls from family, friends and political leaders and after a Chronicle reporter started inquiring about her dilemma. She is scheduled to undergo treatment this month.
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This case is unusual because most patients who put themselves at risk by becoming human trial subjects do not have to pay for their treatment. The vast majority of clinical trials are sponsored by the federal government, private industry - typically a company hoping to get federal approval for a drug or device - or a combination of sources, including grants.
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In this trial, Pappas' doctors at M.D. Anderson are relying on already-approved drugs combined with a stem cell transplant in hopes of preventing her body from developing new cancer cells.
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The grueling procedure - which involves collecting a patient's stem cells, administering extremely high doses of chemotherapy and then reintroducing the cells into the body through bone-marrow or stem cell transplantation - is more expensive than an average trial because it involves a costly procedure with high-priced drugs and requires two to three weeks of hospitalization.
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Adding to the controversy, bone marrow transplantation for breast cancer patients fell out of favor in the late 1990s after studies showed it did not prove beneficial. Pappas' doctors, however, are testing their theory that the procedure might be successful among a select group of patients.
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Barbara Brenner, executive director of Breast Cancer Action, said it's appalling that M.D. Anderson would require Pappas to pay for the privilege of becoming a human guinea pig.
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"They're holding out in front of her something that might help ... but saying, 'You can't have this unless you pay hundreds of thousands of dollars,' " she said.
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But M.D. Anderson officials say the hospital can't absorb the costs if no funding is available.
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"What's really being bought in this situation is hope," said Dr. Ronald Walters, vice president of medical operations and a breast medical oncologist at M.D. Anderson. "Is $250,000 worth hope?"
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A native of San Francisco, Pappas graduated from Lowell High school and UC Davis, then earned her law degree at Golden Gate University Law School. "Prosecute the cancer and put it away for life. That's been my motto from day one," said Pappas, who served as a San Francisco County deputy district attorney for six years before joining Sonoma County's special victims unit last year, where she helps survivors of domestic and sexual abuse. She is also an instructor with the California District Attorneys Association.
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Pappas' personal nightmare started in November 2006 when she went in for her biannual ultrasound. She took that extra precaution because her mother had died of breast cancer less than three years earlier, placing her at high risk for the disease.
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She became nervous when the ultrasound technician at Kaiser's San Francisco hospital took longer than expected and made a comment suggesting something had changed.
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"I asked for a biopsy, and they didn't do it," Pappas said, adding she was never informed about inflammatory breast cancer and its symptoms. "Four and a half months later, I have stage 4 cancer."
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Kaiser officials have defended the health maintenance organization's decisions, describing her care as "appropriate and consistent with standard practice given her family history."
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"Ms. Pappas was receiving regular imaging studies and follow-up, none of which indicated a reason for a biopsy, including the mammogram and ultrasound done in November 2006," the HMO said in a statement.
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Inflammatory breast cancer, which accounts for about 2 or 3 percent of all breast cancers, can be difficult to detect because it doesn't form the kind of solid tumors mammography is designed to capture.
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Patients often come to their doctors with red, swollen or tender breasts, symptoms that sometimes are misdiagnosed as an infection. By the time Pappas had such symptoms, the disease had metastasized to her pelvis, femur, ribs and back. Caught at stage 4, the disease generally is not considered curable, doctors say.
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Since her diagnosis, Pappas has undergone 17 doses of chemotherapy. Dissatisfied with her experience at Kaiser, she sought the expertise of inflammatory breast cancer specialists at M.D. Anderson who recommended a mastectomy followed by radiation. Pappas said she sought another opinion from a UCSF oncologist who concurred with M.D. Anderson's approach.
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Only after Pappas underwent a mastectomy in October did doctors mention the possibility of participating in the bone-marrow transplant trial. Her strong response to chemotherapy put her in remission - meaning there is no evidence of cancer in her body - but her doctors fear she won't stay cancer-free for very long because of the aggressive nature of the disease.
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Pappas' oncologist and an inflammatory breast cancer specialist at M.D. Anderson, Dr. Massimo Cristofanilli, said the magic words: His goal, he said, was not simply to keep Pappas alive as long as possible - he was going for a cure.
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Cristofanilli said Pappas has other treatment options, including radiation and chemotherapy, but that he believes the trial would give her the best shot at preventing a recurrence. "If you do have a chance to cure somebody with this, I think that would be her," he said of his strong-willed patient.
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But stem cell transplantation with high-dose chemotherapy has a long and controversial history among breast cancer patients.
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Doctors used the procedure with late-stage breast cancer patients in the 1980s and early '90s as a last resort to save lives. At that time, many insurers were vilified for refusing to cover the cost of the treatment, deeming it unproven and potentially harmful. But, bowing to pressure, most insurers eventually acquiesced.
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The treatment fell out of favor in 1999, when the National Cancer Institute and the American Society of Clinical Oncology released results of four randomized studies that showed bone marrow transplants did not prolong the lives of women with metastatic breast cancer compared with those who underwent conventional chemotherapy.
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Those results were confirmed on Thursday when M.D. Anderson researchers released a review of 15 randomized high-dose chemotherapy studies conducted worldwide between 1988 and 2002 that found it did not benefit long-term survival rates. In denying Pappas' request, Kaiser relied on that published data showing the procedure not only failed to benefit patients, but that it could potentially be harmful.
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Despite the mounting evidence, Cristofanilli said he believes some patients might defy those odds. He said the trial will test whether carefully chosen patients - those with certain diagnoses who are strong and have demonstrated good response to chemotherapy - could benefit more than weakened patients who underwent the arduous therapy without success.
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The trial has only been going on for about a year and involves just a handful of patients with different types of cancers, Cristofanilli said.
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Dr. John Park, attending medical oncologist at UCSF, said the hypothesis is a reasonable theory to test, but that he would have difficulty recommending it to his breast cancer patients given the history of bone marrow transplantation.
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"It's been completely out of favor for 10 years, but there's a little glimmering of hope around the edges that, in special cases, it may be useful," he said. "This may be one of those cases."
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But Park noted it's extremely unusual for a hospital to require a patient to pay large sums of money to participate in a trial. "Usually if patients have to bear some costs, they are relatively small," he said, adding that insurers generally cover the routine costs of care associated with a trial.
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Because Kaiser won't cover the costs, Pappas is uninsured from M.D. Anderson's perspective.
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"Normal policy for an uninsured patient is to ask for payment in advance of service. The patient is able to pay a significant portion of that, but simply ran out of funds," said John Tietjen, M.D. Anderson's vice president of patient financial services.
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Tietjen said the hospital made an exception in her case because Pappas has so many people and different organizations working on her behalf.
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A fundraiser for Pappas held in June by members of the San Francisco district attorney's and public defender's offices, along with the support of police officers and judges, raised more than $20,000 in one evening. Fundraising has been conducted by Sonoma County prosecutors, who raised almost $10,000, as well as the national Greek Orthodox archdiocese and members of Pappas' extensive Greek community. Friends from Lowell High School in San Francisco and UC Davis are also collecting funds.
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Pappas, who already has begun the preparations and tests for the procedure, is scheduled to receive the transplant around Christmas.
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Her medical costs are expected to far exceed the $235,000 M.D. Anderson cites as Pappas' transplant expenses.
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San Francisco District Attorney Kamala Harris said Pappas' former co-workers are doing all they can to help.
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"This is also a statement about what we need to do about health care in this country," Harris said. "She already has to suffer the physical and emotional toll in terms of her illness, and has to suffer the anxiety about whether she can pay for the treatment she needs."
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San Francisco resident Jim Lucas, who is active on the boards of many Bay Area Greek organizations, recently publicized Pappas' plight on a large listserv he manages for local Greek events. He said he did not know how much has been raised, but described the response as tremendous.
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"Ever since I sent that to my distribution list I have been getting e-mails that have these very, very long threads from some places I don't even know. They say, 'How can we help? What can we do?' " he said. "There are probably people that know about her worldwide."
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Pappas said she feels simultaneously overwhelmed and self-conscious about all the attention, but hopes she can also help educate people about inflammatory breast cancer.

Her father and friends have traveled to Texas to be with her, but Pappas, who is single, often finds herself facing nerve-racking tests and doctor appointments on her own. She said she draws strength from God, her friends and family, and the belief that she will soon be back in the Bay Area doing what she loves. "I just want to get back to being a prosecutor," Pappas said. "I just want to get back to my victims and do what I love. That's my way of giving back. I feel helpless I can't do what my passion is."
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What is inflammatory breast cancer?

Inflammatory breast cancer, or IBC, is an aggressive form of the disease that accounts for 1 to 5 percent of all breast cancers in the United States. -- IBC is called "inflammatory" because instead of forming distinct tumors, the cancer cells block the lymph vessels in the skin, causing the breast to become red and swollen.
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-- Symptoms may include warmness, swelling, tenderness, skin changes and nipple inversion, though not everyone has these signs. Typically symptoms tend to appear quickly, within weeks or months.

-- Patients with IBC tend to be younger than non-inflammatory breast cancer patients.

-- The five-year survival rate is between 25 and 50 percent, significantly lower than the five-year survival rate for those with the non-inflammatory form of breast cancer.
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Source: National Cancer Institute

Want to help?

People wishing to make a donation can write a check to the Evanthia Pappas Transplant Fund (S-5 Account).

Checks should be mailed to the San Francisco Police Credit Union, 2550 Irving St., San Francisco, CA 94122.
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E-mail Victoria Colliver at

This article appeared on page A - 1 of the San Francisco Chronicle