Audio By Carbonatix
part 1 of 2
Last spring, when Barbara Tepe walked out of her California home, slipped into the car next to her husband and began driving to Colorado, it was not the beginning of a pleasure outing. It was a journey to stay alive.
Six months earlier Tepe had been diagnosed with breast cancer. Although she quickly underwent a radical mastectomy and aggressive chemotherapy, her cancer continued to grow, spreading into her chest. A half-dozen physicians in California recommended she receive a bone marrow transplant to stop the advancing disease.
But when Tepe asked her insurance company to pay for the $150,000 procedure, it refused. In February 1993 she hired a lawyer and filed a request in Denver District Court asking the judge to force Blue Cross/Blue Shield of Colorado to pay. On March 1 the judge ordered the company to write the check. So Tepe, whose Colorado relatives had agreed to help her through her recovery, headed to the University of Colorado medical center in Denver.
The two-month transplant procedure didn’t stick. Soon after Tepe returned home to California, her cancer reappeared. By August 1993 she’d had enough of the constant nausea and the aches that wouldn’t pass, and she stopped the toxic treatments.
“She decided she just wanted to have some good time before she passed away,” says her husband, Lester, an Air Force engineer. Barbara died one year ago last month. She was 52 years old.
So far, Eileen Larsen has been luckier. Diagnosed with ovarian cancer in May 1993, Larsen underwent seven treatments of chemotherapy. During the final one, her doctor told her that her body couldn’t handle the toxic drugs again without help. So at the end of last year she flew from her home in Billings, Montana, to CU’s medical center, where she was told she was a perfect candidate for a bone marrow transplant.
Like Tepe, Larsen was rejected by Blue Cross/ Blue Shield when she asked the company to cover the treatment. Like Tepe, Larsen, with the assistance of an attorney and a lawsuit, convinced the company to pay. Six months ago she received the transplant. Since then, she says, “I get pretty good news every time I go to the doctor.” With her cancer receding, Larsen has returned to her job with the Social Security Administration.
Despite the drastically different conclusions to their stories, Larsen and Tepe still have something in common. Although Blue Cross eventually agreed to pay for each woman’s bone marrow transplant, the insurance company has quietly returned through the courts to try to repossess the money.
“Even if I win, I’ve gone through a certain amount of expense,” says Larsen. “But to lose it and then look at that bill would be a frightening thing. Because there’s no way I could come up with that money.”
A year and a half ago a flurry of lawsuits in Colorado and across the country stoked a debate over whether insurance companies should pay for a promising yet expensive treatment for breast and ovarian cancers. In the suits, women claimed their insurers were denying them a chance at life by refusing to pay the six-figure cost of a procedure called high-dose chemotherapy/autologous bone marrow transplants.
Most of the companies responded that there was no hard and fast evidence proving the treatment was effective, and many labeled it experimental. Insurers often refuse to pay for medical procedures they determine to be of unproven effectiveness.
By this summer it seemed as though the issue was resolved. In the vast majority of the lawsuits, judges had sided with the women and against the insurers. And two months ago, after a day of emotional hearings arranged by Representative Pat Schroeder, the federal government agreed to include the treatment in its standard insurance coverage contract with Blue Cross/Blue Shield (both Larsen and Tepe were covered under the federal plan).
Yet the philosophical fires that kindled the controversy still glow. Several insurance companies, HMOs and self-insured corporations continue to routinely deny coverage for the treatment. Bone marrow transplants for breast and ovarian cancers still rouse high passions and low politics over whether judges have any place forcing insurers and hospitals to pay huge sums of money for a treatment that may or may not work.
The fight also raises uncomfortable questions about how well the medical community evaluates new treatments for deadly –and emotionally charged–diseases. Five years ago, under intense public pressure from AIDS activists, desperate physicians and government regulatory agencies quickly lined up behind a relatively untested drug called AZT as a treatment for HIV-positive patients. Last year, after hundreds of millions of dollars had been spent on AZT, a large European study cast serious doubts on the drug’s effectiveness.
Similarly, some insurance representatives say they have been prematurely pressured into paying for bone marrow transplants for breast cancer patients. Why is it, they ask, that such transplants have been used for more than a decade–but that comprehensive clinical trials designed to clearly test their effectiveness are beginning only now?
Perhaps the biggest illusion that the battle is over is borne by the women who have won recent legal battles. In at least four Colorado cases, insurance companies have agreed to pay for a bone marrow transplant but later appealed–or reserved the right to appeal–the case. If the companies win, the patients, or their survivors, could be forced to repay the huge medical fees.
Particularly bizarre are the cases of women like Tepe and Larsen. Both were covered under the federal employees’ health-insurance policy when they were denied treatment. Although Blue Cross technically was their insurer, the company says it simply was enforcing a policy written by a federal agency, the Office of Personnel Management.
In the strange world of contract law, that means the federal government also is paying for Blue Cross’s ongoing legal crusades in various appeals courts. So, even though the OPM recently agreed to cover its employees’ bone marrow transplants for breast and ovarian cancers, the same agency continues to dip into its taxpayer-funded budget to cover the hundreds of thousands of dollars needed to continue fighting Tepe and Larsen over the same procedure.
Should Barbara Tepe’s case be reversed, the $100,000-plus in fees would be the burden of the husband and family that survive her. That prospect, says Lester Tepe, leads him to relive his wife’s disease every day. “This whole thing is kind of a nightmare,” he says.
As it is used to describe treatments for many cancers, the phrase “bone marrow transplant” is a misnomer. The procedure is more an extension of traditional chemotherapy, with an important modification. Think of it as spraying a flower garden with a deadly herbicide to get rid of the weeds, but first collecting seeds so the flowers can be replanted afterward.
The highly toxic nature of chemotherapy drugs prevents oncologists from using them in higher–perhaps more effective–doses. To get around this, doctors discovered they could first remove some of the patient’s bone marrow and freeze it. After extremely high doses of chemotherapy are delivered, the patient’s own marrow is reintroduced and begins producing healthy blood. Because the marrow is the patient’s own, it is not strictly a transplant and thus is described as “autologous.”
If medical procedures inspired evangelists, Roy Jones would qualify as one for bone marrow transplants. Jones, who earned both a medical degree and a Ph.D., trained at Duke University and later worked in New York City. Five years ago he moved west to start the University of Colorado’s Bone Marrow Transplant Program.
Jones is a tall, blond man with a Brando profile and intense pale-blue eyes. During a recent interview he leans back casually in a chair in his cramped and paper-scattered office and drains a Diet Pepsi. He wears a shirt and tie, but not formally. His wife, Elizabeth Shpall, also a physician, is the associate director of the clinic.
Unlike many other physicians and scientists, who cautiously qualify their words at every turn, Jones is fully prepared to divide his world into good guys and bad guys. This is how it shakes out: He is a good guy. Insurance companies that won’t pay for his treatments are the opposite.
“All we’re asking for from the insurance companies is that they behave rationally,” he says. “And they’re not.” He adds: “The insurance companies don’t want [bone marrow transplants] to work. If we can prove it works, then they won’t have a reason not to pay for it.”
To Jones, of course, there is not even a question of how well the procedure works, particularly for breast and ovarian cancers. He is a fast-forward tape recorder of impressive numbers.
Of women with Stage IV metastatic breast cancer (cancer that is advanced and has spread) who are treated with traditional chemotherapy, he says, only 2 percent can expect to be alive and free of cancer five years later. By comparison, the same women treated with high-dose chemo and a bone marrow transplant would have a one-in-five chance of living for five years.
For women with less-advanced cancer who receive the transplant treatment, he adds, the odds of living skyrocket. Jones claims that 80 percent of them will survive cancer-free for at least five years. With traditional chemo, he says, their chances of living beyond the five-year mark are only about 30 percent.
Despite such positive results, Jones says, it’s easy to see why an insurance company wouldn’t want to pay for the treatment. Not surprisingly, he says, it boils down to money.
“If one in nine women are going to get breast cancer, and maybe one in ten of those are good candidates for this treatment, which costs $100,000, you can do the math,” he says. (Earlier this year, the insurance industry did do the math. Lobbyists helped shoot down a bill in the Colorado House that would have required coverage of most bone marrow transplants for breast cancer by predicting that in 1995 alone the added costs to Colorado insurers would be $25 million to $50 million.)
Jones argues that such bottom-line thinking is the only way to explain the seeming nonsensical coverage policies of some insurers in the past. Many insurance companies have covered bone marrow transplants for non-tumor cancers, such as leukemia, for years. Other health plans–the federal government’s employee plan, for instance–cover bone marrow transplants for testicular cancer, which involves a relatively rare tumor.
The same plan did not cover breast cancer–even though Jones says research showing the effectiveness of the procedure on testicular cancer is minuscule compared with the voluminous information compiled about how well it works on breast cancer.
There are other insurance inconsistencies that rankle Jones and his colleagues. Dr. Scott Bearman, one of Jones’s associates at the CU center, points out that insurance companies will cover traditional chemotherapy–whose costs can easily climb into the tens, or even hundreds, of thousands of dollars–without blinking an eye.
Not only is chemotherapy an unruly witches’ brew of drugs whose combinations and dosages are constantly changing, but what Jones and Bearman do is, in fact, primarily chemotherapy. Removing and then reintroducing the bone marrow accounts for less than 10 percent of the cost of the entire procedure, Bearman says.
Like many evangelists, Jones has chosen to step outside the cloister and insert himself into the messy realm of real life to proselytize. As a result, he spends many days each year traveling about the country trying to convince people of the soundness of bone marrow transplants. This past summer he testified compellingly at Schroeder’s congressional hearing. But his highest-profile trip occurred last winter.
That’s when Jones traveled to Riverside County, California, to perform as a star witness in the trial of a woman named Nelene Fox. Fox had been denied a bone marrow transplant for her breast cancer by Health Net, a large HMO, which contended that the treatment was experimental and thus not covered.
Fox died at age forty, before her case came to trial. In December a jury found that Health Net had acted inappropriately in denying her the treatment and awarded her family a staggering $89 million. This past spring Health Net negotiated an undisclosed settlement with the family.
In Colorado, at least a half-dozen lawsuits have been filed by women against their insurance companies. They have sought coverage for bone marrow transplants for either ovarian or breast cancers. Most of the lawsuits have turned on the finer points of contract law–whether the women’s health-insurance policies clearly stated that a bone marrow transplant was covered.
So far, all of the lawsuits have been decided in favor of the women. Despite the stress of the prolonged legal battles, several of the breast cancer patients have come out ahead. Donna Rogers is one of them.
Like many other people in Colorado, Rogers leads an active life. Last month she finished a road race in Denver’s City Park in 45 minutes, better than she had anticipated. Three months earlier she traveled to Washington, D.C., for several days.
She recently has returned to work at the Resolution Trust Corporation in downtown Denver. At a recent interview her face was blushed with good health, and she explained that her metal crutches, which she uses while a metal pin in her hip takes, will be gone soon.
Things didn’t always look so promising for Rogers. In 1990 doctors discovered a lump in her left breast. Although a series of treatments seemed to have worked, a nagging pain in Rogers’s hip confirmed a cancer survivor’s worst fears. In the summer of 1992 her physicians told her the cancer had metastasized to her left hip.
She recalls, “My doctor said, `You can take chemo until your death, in 24 months, or you can have a bone marrow transplant.’ I wasn’t ready to die. My mother had died of colon cancer. I was with her during her last six months of life, and I just was not going to go through that again.”
When her insurance company refused to pay for the transplant, Rogers hired a lawyer and filed a lawsuit. In the spring of 1993 the company, Blue Cross/Blue Shield, agreed to a settlement deal.
Today, eighteen months–and $267,000 in medical bills–later, “I don’t think you’d know I was ever sick,” she says proudly. Adds Susan Kudla, a local attorney who has assisted Rogers in her legal battles, “You can’t look at someone like Donna Rogers and say that this treatment is experimental.”
For other women, a victory in court is not necessarily a guarantee of life. Although they don’t know each other well, Donna Rogers probably owes some of her life to Cynthia Snow, an Aurora schoolteacher.
Snow was first diagnosed with breast cancer in 1989. When she asked her insurance company, CompreCare, to pay for a bone marrow transplant, it refused. Subsequent traditional chemo treatments seemed to work. In August 1992, however, Snow suffered a recurrence.
Once again, CompreCare turned down her request to pay for the bone marrow transplant. This time around, Snow hired a lawyer. At the end of 1992 the insurance company beat her to the legal punch, filing a lawsuit that attempted to prevent Snow from forcing it to pay. Snow countersued.
In what has become an important legal ruling, a Denver District Court judge decided in Snow’s favor, and CompreCare coughed up the money. Snow received her high-dose chemotherapy/bone marrow transplant treatment at Presbyterian-St. Luke’s Medical Center in the spring of 1993.
Unlike Rogers, Snow’s prognosis is not promising. This past July her doctor informed her that she had suffered another recurrence. “I’m taking drugs now that basically are keeping the wolves away from my door for a while and [that] keep me comfortable,” she says. Her doctor has acknowledged that she will probably die in the first half of next year. Snow is 43 years old.
“I really believe that CompreCare let me down and gave me a death sentence,” she says. “If I’d had a bone marrow transplant in 1989, I am 100 percent certain I’d have been cured and living.”
end of part 1
