Change of Address Changes Outlook for Brain Cancer Patient

March 21, 2010— -- For nearly a decade, Paula Oertel's brain tumor was kept at bay by a drug that was not approved to treat her condition.

Then Oertel did something she never imagined would jeopardize her good health.

She moved -- less than 30 miles -- from one county in Wisconsin to another.

That move triggered a review of her health insurance from Medicare, which eventually led to a loss of coverage, including the drug.

And the tumor returned within four months.

What happened to Oertel stunned her doctor, Dr. Mark Malkin. Nothing he learned in medical school prepared him for what now is too often a sad and frustrating part of his job as an oncologist: fighting Medicare and private insurance companies over life-or-death decisions.

Doctors aren't supposed to get emotionally involved in the cases of their patients, but tears well up in Malkin's eyes when he talks about Oertel, the 40-year-old Oshkosh woman he has been treating for several years.

"I wish Paula would have a second chance," he said, choking up.

Oertel and Malkin are facing an ailment no drug can cure: a complex health insurance system that can overwhelm a seriously ill patient unequipped to deal with its complicated rules.

In Washington today members of the House of Representatives are slated to meet for a showdown vote to decide the fate of the nation's latest attempt at healthcare reform.

But while politicians and pundits trade sound bites cases like Oertel's illustrate how important decisions made between doctors and patients can be overruled, leaving patients with no options and the likelihood of dying in a matter of months.

All over the country, oncologists are having to advocate more for their patients as a growing number of expensive drugs have come on the market in the last few years, said Allen Lichter, M.D. chief executive officer of the American Society of Clinical Oncology.

"It is part of the landscape now," Lichter said. "There is a great amount of effort (advocating for patients) today in oncology."

Oertel, a shy, single woman, said she has tried to remain upbeat throughout the ordeal, but the decision to deny coverage for the drug that was keeping her alive made her mad.

"My attitude was pretty optimistic, even now," she said.

Oertel's saga began 12 years ago, when she was 29.

She began having headaches, stiffness in the neck and then had a seizure. A CAT scan done at a hospital in Oshkosh revealed that she had a tumor on the left side of her brain. The tumor was a glioblastoma multiforme, the same kind that killed Massachusetts Sen. Edward Kennedy last year.

Glioblastoma is the most common primary malignant brain tumor in adults, affecting about 9,000 Americans a year. On average, survival is about 15 months.

Oertel went to Froedtert Hospital in Wauwatosa for surgery followed by radiation.

Within two months, the tumor had returned.

She had a second surgery and more radiation.

At the time there were no approved drugs for treating Oertel's cancer, but as a last resort doctors decided to try interferon beta, a drug approved to treat multiple sclerosis that also had shown promise in treating cancer, Malkin said.

At best, it was a long shot, but Oertel began injecting herself with interferon three times a week.

Within a few months something amazing happened: Oertel's tumor disappeared completely.

"It worked beautifully," said Malkin, chief of neuro-oncology at Froedtert Hospital. "Her tumor just went away. She went into remission and stayed in remission for nine years."