Woman Puts Bureaucracy In Remission Cancer Patient Forces Feds To Retreat In Coverage Fight
Kay Bishop is fighting breast cancer, and holding her own so far.
Bet on her to win. For a warm-up bout, she fought the federal bureaucracy to make it pay for her treatment and won.
The South Hill mother and wife of an Air Force retiree is getting a little better each day as she recovers from a cancer treatment known as high dose chemotherapy with peripheral stem cell rescue or HDC/PSCR.
That’s a long name for the expensive and complicated process that her cancer specialist, Dr. Andrew Hertler, says is the most promising way to treat the cancer that was ravaging Bishop’s body just a few months ago.
CHAMPUS the government agency that oversees health care for military spouses, dependents and retirees - called the treatment experimental and refused to pay for it. This spring, U.S. District Judge Alan McDonald disagreed, saying even by the agency’s own standards, the treatment can no longer be considered experimental.
A study published last fall reported a success rate of nearly 20 percent with the treatment. Conventional treatments, which CHAMPUS does cover, have a success rate of about 2 percent.
McDonald ordered the government to pay Bishop’s bills, which could total about $75,000.
Despite that ruling and two other losses in other federal courts, the agency will not routinely pay for other patients to receive the treatment, a CHAMPUS spokesman said last week.
Bishop, 57, and her attorney, Bill Etter, hope other women suffering from advanced breast cancer will be spared her bureaucratic battle.
CHAMPUS should approve the treatment for all its breast cancer patients whenever doctors think it is warranted, Etter said. Or Congress, which controls the huge medical care coordinator, should tell the agency to do so, he said.
Bishop fears many other women with breast cancer will be told the treatment isn’t covered and give up. “Many military dependents learn to behave themselves and do what they are told,” she said. “They probably have no idea they could fight this big thing called CHAMPUS.”
That acronym stands for Civilian Health and Medical Programs of Uniformed Services. The agency is not an insurance company. Rather, it contracts with private insurers and other medical providers to treat its clients in different communities.
But the rules for what is considered standard treatment are established by CHAMPUS, which refuses to pay for experimental or investigative procedures that are not generally accepted in the medical community.
“It’s still being investigated by the National Cancer Institute,” Dave Potts, a spokesman at the agency’s Denver headquarters, said of Bishop’s treatment.
Although HDC/PSCR is controversial in some medical circles, Hertler and other oncologists argue that it is an established and standard treatment for advanced breast cancer in the Northwest.
“I don’t consider the approach to be experimental,” said Bill Bensinger, an oncologist at the Fred Hutchinson Cancer Institute in Seattle. “The majority of insurance companies now recognize this procedure.”
HDC/PSCR is more effective than traditional therapies that rely solely on lower doses of chemotherapy, Bensinger said. It is also about half as expensive as combining high doses of chemotherapy with bone marrow transplants, another common procedure.
“There are fewer days in the hospital, fewer transfusions and fewer expensive antibiotics,” Bensinger said.
Bishop fought breast cancer once before. In 1984, she underwent a mastectomy and radiation therapy, and was free from cancer for 10 years.
But in February 1994, she had swollen lymph nodes in her neck. Doctors checked and discovered the cancer was back - possibly spawned by a single cell that survived the earlier radiation.
She was diagnosed with Stage IV metastatic breast cancer, which meant the disease was spreading throughout her body. Unchecked, the disease is fatal.
Doctors tried two different types of traditional chemotherapy. Neither worked.
“In the meantime, the cancer took off on a rampage,” Bishop said.
Chemotherapy is a tricky thing, Hertler explained.
Cancer is very sensitive to certain chemicals, and doubling the dose of a chemical can kill 10 times as many cancer cells. The problem is, those chemicals also kill good cells in the blood.
“You give as much chemotherapy as you can. But if you give too much, you kill the bone marrow and the patient dies.”
Hertler suggested HDC/PSCR as a last resort. It involved killing the cancer with high doses of chemotherapy that would bring Bishop close to death.
Her good cells, such as the red and white blood cells, would then be replaced by a transfusion of “stem cells” that had been taken from Bishop before the chemotherapy started.
Stem cells are the essence of blood cells, which the body turns into red or white cells or platelets, depending on what it needs. Stem cells naturally reside in bone marrow but doctors can coax them into the bloodstream with certain drugs and “harvest” them through a process similar to kidney dialysis. The blood is withdrawn, then spun in a centrifuge to separate the stem cells, which are frozen and stored. The rest of the blood is returned to the patient.
“In my own mind, I made the decision (to undergo the treatment) the first time we talked about it,” Bishop said. But when she and her husband, Hank, asked CHAMPUS if it would cover the procedure, the agency said no.
“I’m not sure whether shock or fear or terror came first, but within a minute, I went into a fighting mode,” Bishop said. “I said, ‘We’ll do it one way or another.’ I was willing to go into the poor house if necessary if Hank would go with me.”
The Bishops asked CHAMPUS to reconsider its refusal. Agency officials said they would study her case.
In December, she began making trips to the blood bank to have her stem cells harvested. The four-hour stays were timed so cells could be rushed to Spokane International Airport, placed on a plane to Seattle, then taken by taxi to the Fred Hutchinson Cancer Center, where they were frozen and stored.
In the meantime, Etter filed suit in U.S. District Court to force the government to pay Bishop’s bills.
The government and Etter agreed to speed up the process by submitting briefs and affidavits, rather than holding a trial.
On Feb. 5, with the case on McDonald’s desk, Kay Bishop entered Sacred Heart Medical Center to begin intensive chemotherapy. Eight days later, with her white blood cell count almost unmeasurable, doctors began the transfusions of stem cells that had been flown back from Fred Hutchinson.
While Bishop’s body struggled to rebuild its immune system, McDonald was reading a study that Etter had presented to show that HDC/ PSCR was not experimental.
One of the main objections by CHAMPUS was the lack of a well-documented study that compared patients who received the treatment with patients who received traditional chemotherapy.
CHAMPUS physicians said they diligently watched for such a report, and were sure none existed. But in October - before the agency had rejected Bishop’s request for the treatment - South African doctors had published a study showing substantial success with HDC/PSCR.
In light of the study, the agency’s denial “has no rational connection to the underlying facts,” McDonald wrote.
CHAMPUS used outdated studies to deny coverage, the judge noted - something that two other federal courts had already told the agency. McDonald ordered the agency to pay Bishop’s medical bills, and her attorney’s fees.
CHAMPUS has not appealed McDonald’s ruling, but it is contesting the two previous losses involving patients in Chicago and Norfolk, Va.
The government paid Bishop’s bills, but Potts said the agency still considers the treatment “investigational” and will not routinely pay for it.
Recuperating at home in front of a crackling fire last month, Bishop said she believes her victory is about more than just one person’s medical bills. She wants the federal government to fund the treatment for other cancer victims.
It’s too early to tell if Bishop will be among the 20 percent of patients who survive 10 years after receiving the treatment. As she regains her strength daily, she said she is grateful for each new day, for the chance to see her son graduate from high school this spring and to hold her first grandchild next month.
“It’s definitely worth it,” she said.
“There’s too much to live for. Whether it’s cancer or the government, you just have to fight for it.”
, DataTimes ILLUSTRATION: Color Photo