MEDICAL MAZE - Legal Loophole Ensnares Breast-Cancer Patients

Shirley Loewe Chooses
The Wrong Clinic
And Starts Long Ordeal

By JOHN CARREYROU
September 13, 2007

LONGVIEW, Texas -- In June 2003, Shirley Loewe went to Good Shepherd Medical Center here with a softball-size lump in her breast and was diagnosed with a rare form of breast cancer. She didn't know it, but she had just made a big mistake.

Ms. Loewe was uninsured. Under federal law, she could have gotten Medicaid coverage -- and saved herself a lot of hardship -- if she'd gone to a different clinic less than a half-mile away. But by walking through Good Shepherd's doors, Ms. Loewe unwittingly let that opportunity slip and embarked on a four-year journey through the Byzantine U.S. health-care system.

It was an odyssey that would take her to five hospitals, two clinics, two charitable organizations and two nursing homes in two states. She was denied assistance or care at least six times along the way, for reasons that ranged from not being poor enough to not being sick enough.

Ms. Loewe eventually got treatment, but at personal cost and great aggravation. To qualify for charity assistance, she had to reduce her $15,000-a-year income as a hairdresser by cutting back on her working hours and giving up her home. Later, she lucked into first-class care thanks to a serendipitous encounter at a Little League game.

Ms. Loewe is one of thousands of women who get caught in a loophole in the Breast and Cervical Cancer Prevention and Treatment Act each year. Under the little-known law passed by Congress in 2000, uninsured women under age 65 who are diagnosed with breast or cervical cancer can have their treatment covered by Medicaid, the government-funded health program for the poor, even if they don't meet all of its eligibility criteria.

But the law gives states an escape hatch. Rather than provide coverage to all comers, states can choose to cover only those diagnosed at clinics that get funding from a federal cancer-detection program. Texas chose the more restrictive option.

After cancer activist groups lobbied its legislature, Texas recently changed its version of the law to cover women diagnosed by any health provider starting Sept. 1. But 21 states continue to exclude patients diagnosed outside the federal cancer-detection program.

Niko Ferguson sits with her mother, Shirley Loewe.

The Treatment Act loophole is just one of a number of cracks in the patchwork of laws and regulations that govern the U.S. health-care system. Crafted by lawmakers to save money, these coverage gaps can turn the quest for care into a daunting obstacle course for the country's 45 million uninsured when serious illness strikes. Perhaps nowhere is the problem as stark as in Texas, where one in four residents lacks health insurance -- the highest proportion of uninsured in the nation.

A California native, Ms. Loewe was a free spirit. In the 1970s, she lived in a cabin in the Sierra Nevada mountains with her husband and her two children, a boy and a girl. Tragedy befell the family when the boy died from croup, a respiratory illness that afflicts young children. Ms. Loewe later divorced and moved to East Texas, settling in this small, working-class city. She worked long hours at Today's Cuts, a local hair salon, to make ends meet. Like many uninsured Americans, she went without health insurance because her employer didn't offer any and she couldn't afford it on her own.

Fear and Denial

Ms. Loewe first noticed a nickel-sized mass in her left breast in early 2003, according to her medical records. But she was distracted by the death of her father that spring. Her lack of insurance, combined with the fear and denial experienced by many cancer patients, also made her put off a doctor visit. By the time she showed up in late June at the emergency room at Good Shepherd, one of two hospitals in Longview, the mass had grown to nearly four inches in diameter.

Ms. Loewe earned too much to get Medicaid in Texas the regular way, but she would have qualified for it under the Treatment Act had she been diagnosed by the Wellness Center, a nearby clinic that participates in the federal cancer-detection program. Good Shepherd could have referred her there, but instead it sent her to Byron Cook, a staff surgeon. Dr. Cook diagnosed Ms. Loewe with inflammatory breast cancer, a rare and aggressive cancer that is often fatal, and referred her to a local oncology clinic, the Longview Cancer Center.

A Good Shepherd executive says the hospital didn't know about the Treatment Act. A spokesman for the Texas Department of State Health Services says it relies on participating clinics to get the word out. "I don't want to get into a game of finger-pointing because that's not useful to anyone," the Texas spokesman says.

TEXAS' NEW LEGISLATION

"A woman who received a breast or cervical cancer screen service under Title XV of the Public Health Service Act and who otherwise meets the eligibility requirements for medical assistance for treatment of breast or cervical cancer as provided by Subsection (y) is eligible for medical assistance under that subsection, regardless of whether federal Medicaid matching funds are available for that medical assistance. A screening service of a type that is within the scope of screening services under that title is considered to be provided under that title regardless of whether the service was provided by a provider who receives or uses funds under that title."

-- Texas Bill No. 1696, which took effect Sept. 1, 2007

Michelle Trich, the Wellness Center's executive director, says the clinic does community outreach, but doesn't know of any specific effort to get neighboring Good Shepherd to refer patients to the clinic.

With no means to pay for medical bills, Ms. Loewe went to her county's indigent clinic. The only assets she listed were $40 in cash and $60 in a checking account, but her application was rejected. Her most recent paycheck showed she had earned $7,096.02 in the first 5½ months of the year. That translated into an annual income far higher than the $8,980-a-year limit imposed by the county's charity guidelines for a single adult.

So Ms. Loewe cut back her hours to reduce her income. No longer able to afford her rent of $400 a month, she moved out of her apartment and rented a travel trailer from a friend for $200 a month.

Meanwhile, Lewis Duncan, an oncologist at the Longview Cancer Center, started Ms. Loewe on a classic treatment regimen of chemotherapy drugs, provided free by the drug makers' patient-assistance programs. On Aug. 4, 2003, she reapplied for charity assistance at the county clinic. With her lower wages, Ms. Loewe was approved, and the county began to pay for her treatment.

The county also agreed to pay for an antidepressant. Family members say Ms. Loewe felt helpless and afraid. Her daughter, Niko Ferguson, who lives in Denver, says her mother would often cry when they talked on the phone.

Ms. Loewe's sister, Tonna Day, who lives in the neighboring town of Gladewater, says Ms. Loewe desperately wanted to be treated at the M.D. Anderson Cancer Center, the world-renowned cancer hospital in Houston. Mrs. Day says Ms. Loewe thought she would stand a better chance there.

She may have been right. Last year, M.D. Anderson opened the world's first dedicated clinic for inflammatory breast cancer. The hospital's five-year survival rate for the disease is over 40%. The national five-year survival rate is a little above 30%.

Ms. Loewe called M.D. Anderson but was told she needed a referral from her oncologist. She asked Dr. Duncan for the referral, but he refused, Mrs. Day says.

Dr. Duncan says he knew from experience that M.D. Anderson didn't take charity-case referrals unless the patient's diagnosis was unusual and the treatment couldn't be handled locally. Contacting it about Ms. Loewe "would have been a waste of time," he says.

A spokesman for M.D. Anderson says the cancer hospital does accept in-state referrals of charity cases regardless of the type of diagnosis. Had Ms. Loewe been covered by Medicaid, she would have stood an even better chance of admission; M.D. Anderson treats Medicaid patients no differently than those who are covered by private insurance.

Frustrated and confused, Ms. Loewe searched on the Internet and contacted an advocacy group called Native American Cancer Research, which fights cancer among Indian tribes. From her mother Ms. Loewe had inherited membership in the Oklahoma-based Chickasaw tribe.

Linda Burhansstipanov, NACR's president, says she first tried to requalify Ms. Loewe for Medicaid through the Treatment Act by suggesting she get screened at a program clinic for cervical cancer. But the effort was rejected by the Texas health department. The department spokesman says that would be tantamount to Medicaid fraud.

Later, as NACR was trying other avenues of help, Ms. Loewe phoned in tears because the county indigent clinic suspended its assistance, alleging she had ramped up her working hours, Ms. Burhansstipanov says. NACR intervened and got her reinstated. A supervisor at the county clinic says there's no record of Ms. Loewe being dropped from the county welfare rolls during that time.

Mrs. Day recalls visiting her sister around this time and being shocked by Ms. Loewe's living conditions. The 24-foot trailer was leaking gas and Ms. Loewe was complaining about a violent headache, which Mrs. Day figured was caused by the leak. "I told her: 'For Pete's sake, come live with us,' " Mrs. Day remembers. At first, Ms. Loewe wouldn't hear of it. But she wept, relented and moved in with her sister and brother-in-law that night.

After four months of chemotherapy, Ms. Loewe's tumor had shrunk by half but wouldn't get any smaller. Her doctors decided it was time for a mastectomy. Dr. Cook's office repeatedly asked Ms. Loewe how the operation would be paid for, according to Mrs. Day and Ms. Burhansstipanov. He finally scheduled the surgery in early November 2003 after receiving a consent fax from the county saying it would cover the costs.

Ms. Loewe's daughter, Mrs. Ferguson, flew in from Colorado to be with her mother for the operation. Mrs. Ferguson, who works as a nurse, noticed her mother and the surgeon weren't getting along, and became alarmed when Dr. Cook referred to removing the wrong breast the day before the surgery.

Dr. Cook says he doesn't remember the incident. He says Ms. Loewe got first-rate care and that she simply waited too long before getting the lump in her breast checked out. "She didn't exactly seek what you call early attention," he says.

The surgery went smoothly. Ms. Loewe underwent radiation therapy for five months until April 2004, when she went into remission. She returned to work full-time at Today's Cuts and moved back into an apartment next to the one she had once lived in.

The reprieve was short-lived. Three months later, Mrs. Ferguson noticed her mother was having trouble talking when they were on the phone. Mrs. Day took her sister back to Good Shepherd. The news wasn't good: Ms. Loewe's cancer had returned and metastasized to the brain, where it had spawned a tumor. The hospital gave Ms. Loewe only a few months to live.

Convinced Ms. Loewe wasn't receiving top-quality care, Mrs. Ferguson decided to bring her mother to Denver. Ms. Loewe moved in with her daughter's family in a Denver suburb. She slept on a donated mattress on the floor of her grandson's room.

But the move brought new complications. Ms. Loewe applied for Medicaid coverage in Colorado, but she was told the process could take as long as a year because she needed to establish residency in the state, her daughter and Ms. Burhansstipanov say.

A spokeswoman for the Colorado Department of Healthcare Policy and Financing, which administers the state's Medicaid program, says she has no idea why Ms. Loewe was told that. States are required by federal law to act on a patient's application within 45 days and there is no time delay to establish residency.

THE BREAST AND CERVICAL CANCER PREVENTION AND TREATMENT ACT OF 2000

Passed by Congress on Oct. 24, 2000, the law was intended to provide Medicaid coverage to uninsured women with breast or cervical cancer who didn't meet all of Medicaid's eligibility criteria, such as income limits. (Read the law.)

Congress gave states the option to implement the law either generously or more restrictively. Under the generous but more costly option, states can grant Medicaid coverage to all comers regardless of where their cancer is diagnosed. Under the more restrictive option, they can deny coverage to women diagnosed outside a federal cancer-detection program. Twenty-two states chose to do the latter. One of them, Texas, switched to the more generous option Sept. 1.

Created in 1990, the federal cancer-detection program, known as the National Breast and Cervical Cancer Early Detection Program, is funded by the Centers for Disease Control and Prevention and administered by state health departments. Its reach is limited: The $190 million annual budget is enough to serve only 15% of uninsured women eligible for breast-cancer screening; and its services are available only through participating health providers.

There are about 200 such providers across Texas. In Longview, the participating provider is the Wellness Center. The clinic is located less than half a mile from Good Shepherd Medical Center, the hospital where Shirley Loewe was diagnosed with breast cancer in June 2003.

Under Texas' original version of the law, patients like Ms. Loewe had to have at least part of their cancer diagnosis performed, or paid for, by a participating clinic to qualify for Medicaid coverage. Because she was diagnosed at Good Shepherd and not the nearby Wellness Center, Ms. Loewe couldn't qualify. Getting re-screened at the Wellness Center after already being diagnosed somewhere else would have been considered Medicaid fraud.

Through her contacts in the Denver medical community, Mrs. Ferguson found a neurosurgeon, J.D. Day, who was willing to operate on her mother free. But the hospital where Dr. Day performed his surgeries, Swedish Medical Center, refused to make its facilities available unless Ms. Loewe or her family paid $90,000 up front, Mrs. Ferguson says. Mrs. Ferguson and her husband, who is also a nurse, had only a few thousand dollars in the bank.

Dr. Day, who is now an associate professor of neurosurgery at the University of Texas Health Science Center at San Antonio, confirms Mrs. Ferguson's account. A spokeswoman at Swedish Medical Center says the hospital has no record of Ms. Loewe seeking admission. "It's not consistent with the way we handle these cases every day," she says.

Dr. Day's office referred Mrs. Ferguson to the Colorado Neurological Institute, a charity organization for patients with brain illnesses that has a partnership with Swedish Medical Center. While talking on the phone to a social worker at the institute, Mrs. Ferguson remembers expressing frustration over her mother's situation. She says the social worker replied: "People die every day waiting for the system to catch up. Why is your mother any different?" Mrs. Ferguson says she broke down in tears.

Luanne Williams, the institute's executive director, says what the social worker told Mrs. Ferguson is "unfortunately a true statement, but I agree that it was an insensitive thing to say to a person in that situation."

Mrs. Ferguson next tried the Denver Health Medical Center, a county hospital that provides charity care to numerous uninsured patients. She was told that her mother couldn't qualify for indigent care there because her house was located in a different county.

Mrs. Ferguson then contacted the University of Colorado Hospital and argued that her mother's case was an emergency. She says the university hospital told her it was under no obligation to admit Ms. Loewe because her brain tumor resulted from a pre-existing condition -- breast cancer -- and therefore didn't qualify as an "emergency medical condition."

Unwilling to take no for an answer, Mrs. Ferguson recalls putting the following scenario to the hospital: What if her mother stopped taking her antiseizure medication and went into a coma? Wouldn't it have to treat her then? Mrs. Ferguson says the hospital replied that in such a scenario, it would stabilize Ms. Loewe and then discharge her.

A spokeswoman at the University of Colorado Hospital says illnesses like cancer aren't considered emergency conditions under the strict sense of federal statutes against patient-dumping. "We frankly do not have the financial resources to provide care to medically indigent patients whose conditions are not immediately life- or limb-threatening," she added in an emailed statement.

Mrs. Ferguson, who is personally opposed to universal health care because she thinks it would lower the quality of care, was discouraged. "I remember thinking: 'How can they let her die just because she doesn't have health insurance in this state?' " she says.

In early August, Mrs. Ferguson brought Ms. Loewe, who could no longer be left alone, to one of her son's Little League games. The mother of a teammate, Kelly Fulton, noticed Ms. Loewe on the sidelines. Mrs. Fulton was the former administrative director of a neurosurgery group at another Denver hospital, St. Anthony Central. Her husband, Matt Fulton, used to be the hospital's chief executive officer.

The Fultons put Mrs. Ferguson in touch with John Nichols, a neurosurgeon at St. Anthony Central. Dr. Nichols agreed to see Ms. Loewe right away. His prognosis was much more upbeat than the one she had been given in Texas. And unlike Swedish Medical Center, St. Anthony agreed to take Ms. Loewe on free. On Aug. 17, Dr. Nichols operated on her and removed most of the tumor.

On Oct. 13, 2004, nearly three months after she applied, Colorado granted Ms. Loewe Medicaid coverage and covered the costs of the surgery retroactively. The following month, she returned to St. Anthony for treatment under a Gamma Knife, a machine that emits powerful gamma rays, to dissolve what was left of the tumor. The procedure was a success.

Over the following 18 months, Ms. Loewe had several recurrences of cancer in her chest, but she went into remission after more rounds of chemotherapy and radiation. In May 2006, body and brain scans came back clear. Once unable to talk, Ms. Loewe fully recovered her speech and was able to function autonomously.

Tired of the cold Rocky Mountain weather and missing her friends, Ms. Loewe persuaded her daughter to let her move back to Texas. She rented an apartment in Gladewater near her sister's house and went back to work at Today's Cuts. Ms. Loewe's daughter bought her a used Chevy Cavalier. Ms. Loewe reapplied for Medicaid coverage in Texas and this time got it promptly. Life went back to normal.

But last spring, the cancer came back with a vengeance. An MRI showed numerous tumors in Ms. Loewe's brain, and she went into steep neurological decline. This time no surgery would make a difference.

Battle With Bureaucracy

Ms. Loewe's battle with the health-care bureaucracy wasn't quite over, though. She underwent radiation in Tyler, Texas, to ease her pain and after 21 days was transferred to a Gladewater nursing home. Medicaid covered the Gladewater nursing home but wouldn't pay for Tyler. Medicare, the federal program for the elderly that also provides coverage to disabled people, would pay for only the first 20 days in Tyler. Mrs. Loewe's daughter wound up paying for the extra day -- $124. (Medicaid eventually reimbursed her for most of it).

On a late June morning, Ms. Loewe lay in bed, emaciated and writhing in pain. Her left arm and hand were swollen to three times their size from lymphedema, a side effect of her breast surgery. Embarrassed by her appearance, she hid the huge black scar left on the top of her head by her brain surgery under a grey beret.

She reacted little when told that her ordeal could have been avoided had she gone to a different clinic back in 2003. "It's very complicated when you don't have health insurance," she whispered. "I really don't understand it much."

Ms. Loewe died on June 25 at age 55. Her daughter sold her car to pay for her cremation.

Write to John Carreyrou at john.carreyrou@wsj.com