Medical care's state of denial

Karen Vinci

In December 2006, when Karen Vinci’s bile-duct cancer recurred, she was told surgery wasn’t an option because of the location of the tumor.

Instead, a group of doctors at UCSF recommended what they considered the Alamo woman’s only option: five weeks of external-beam radiation followed by noninvasive radiosurgery that used a robotic device called CyberKnife, which attacks the tumor with high doses of targeted radiation.

Vinci’s insurer, Blue Shield, approved all the treatments she needed in preparation for the therapy, including the implantation of gold seeds in the tumor. But about two weeks into the radiation treatments in March 2007, Blue Shield reneged on the rest of the radiation as well her CyberKnife procedures.

So Vinci’s husband pulled out a checkbook and paid UCSF $10,000 of the $60,000 treatment to make sure his wife’s care was not delayed or canceled.

“I had no choice. It was either die or give them money,” said Vinci, 57.

Blue Shield had labeled the treatment, which received FDA approval in 2001 for treatment of nonoperable tumors in all parts of the body, “experimental.” CyberKnife’s manufacturer, Accuray Inc., said the federal government’s Medicare program covers the treatment, which has been used on more than 40,000 patients.

Vinci, with the help of her husband and a patient advocate at UCSF, immediately filed a grievance to have a doctor within the insurance company review her case. After that was denied, Vinci went to the insurer’s second-level appeal, a three-party panel, which sided with the company.

When Vinci requested an expedited independent medical review of her case through the Department of Managed Health Care, she got the answer she wanted. The state’s reviewers overturned Blue Shield’s decision, and the hospital promptly refunded the Vincis’ money.

Vinci, who is now cancer-free, still does not understand the denial, especially because the treatment was expected to give her a full recovery.

“It was just devastating to know that money was an issue when it comes to your life,” she said.

Richard Reynolds

Richard Reynolds’ health insurer, Blue Shield of California, paid for virtually everything – surgery, chemotherapy, radiation and medication – after the Berkeley man was diagnosed last year with a rare form of cancer.

When his tumor failed to show on a standard CT scan, his doctors recommended a more sensitive and expensive imaging technique called a PET scan. But his medical group and insurer, having denied an earlier PET scan request, again balked, labeling the tool “experimental” or “investigational” for his diagnosis.

Reynolds managed to get the scan covered when his surgeon appealed directly to high-ranking Blue Shield executives. But a follow-up scan requested several months later was still denied.

Fearing a delay in care, Reynolds shelled out $2,200 in March for the scan at a private PET imaging center. CT scans cost about half the price of PET scans.

Reynolds was mystified by Blue Shield’s position. “They’ve paid for all kinds of specialists. They’ve put out hundreds and thousands of dollars. But with this one thing – the PET scan – they’ve drawn this bizarre line in the sand,” said Reynolds, 64, communications director at Mother Jones magazine.

His doctor recently submitted a fourth request for an upcoming PET scan, which also was denied.

Reynolds, whose appeals were initially denied through Blue Shield’s internal grievance process, submitted a request for an independent medical review through the state Department of Managed Health Care. But when a reporter told Blue Shield officials about the issue – even without identifying the patient or his diagnosis – they tracked down Reynolds’ case and resolved the problem.

Blue Shield’s medical director, Dr. Alan Sokolow, said his company should have covered the test, but found itself in the difficult terrain of trying to apply standardized protocols to a rare condition.

“We try very hard to be consistent and be fair and correct in our decision making. But this is why we have an appeal process,” he said. “Sometimes, we don’t always make the correct decision.”

Peter Isgro

When antiques store owner Peter Isgro was diagnosed with late-stage colon cancer, he was told he had just months to live. That was more than two years ago.

For those two additional years, the 61-year-old Santa Cruz resident credits a different oncologist who put him on an intense chemotherapy regimen – a multidrug concoction of older and cutting-edge therapies that costs about $10,000 every other week.

It was a treatment that gave Isgro the ability to continue working four days a week, allowed him to travel to Europe and kept him alive.

But after scans showed his tumors were growing, his insurer, Anthem Blue Cross, discontinued coverage of the more expensive drugs in his chemotherapy regimen. Since their use was stopped in early May, Isgro’s disease, according to his oncologist, has “exploded.”

“Clearly, we were keeping a lid on it. It was progressing very slowly and, when we stopped the drugs, it progressed very quickly,” said Dr. James Cohen of Los Gatos, adding that all of the drugs he had been combining are approved by the U.S. Food and Drug Administration for colon cancer.

Cohen said no amount or combination of medication would cure Isgro. Rather, he hoped to give him a better quality of life as well as more time.

Two appeals to the state Department of Managed Health Care have gone in favor of the insurer. In the most recent decision, issued June 12, two of the three reviewers concluded that the requested therapy would not be more beneficial than the standard, less expensive treatment the insurance company approved.

Isgro believes his insurer simply doesn’t want to spend any more money to keep him alive. And he’s angry.

“If my name was Kennedy, do you think they’d try to deny me?” he said, referring to Sen. Edward Kennedy, who recently underwent surgery for brain cancer.

Isgro, who has found an attorney to represent him at no cost, is considering his options. He recently resumed the more expensive treatments with the help of his sister, who paid more than $4,000 out of pocket. He also is contacting the pharmaceutical companies that make his drugs to see if they will help pay for his therapy.

“What good does it do to have any kind of national health care plan or state health care plan if your doctor, your primary doctor, does not have the right to prescribe the medications he feels are best for you?” he said. “That’s not health care.”

What to do if you are denied medical care

If your health insurance carrier is refusing to approve treatment recommended by your doctor, you have a number of options. First, contact your health plan. You probably will have to go through the plan’s internal grievance process first. If time is of the essence, ask for an expedited review through the state.

Tips to help you get the care you need:

— Review your health plan policy. Many are available online.

— Make sure your doctor is aware of your problem. Sometimes the initial denial comes from the medical group, which is charged with managing costs. In any case, your doctor’s support is important.

— Request the reason for the denial in writing. Take detailed notes of all conversations, including the date and time of the call and the name of the person you speak with. Save copies of all paperwork, and keep these records in chronological order.

— Act soon. If you wait longer than six months, you could lose the right to file a complaint, ask for an independent medical review (also called an IMR), or take other action against your health plan such as arbitration or a lawsuit. An IMR decision is binding on the health plan, but not the patient.

Source: Department of Managed Health Care; Kaiser Family Foundation; Healthcare Liaison Inc.; Chronicle research