Even a hero such as Sen. John McCain will need uncommon luck to match the fight a Wisconsin woman put up against the same kind of aggressive brain tumor he is now battling.
On average, people diagnosed with glioblastoma multiforme survive 15 months. Paula Oertel went nine years without a recurrence.
“That in itself is remarkable,” her physician, Dr. Mark Malkin, told The Daily Beast.
Paula might have continued to keep the cancer at bay and might even still be alive today were it not for a bureaucratic double twist in her medical benefits such as no member of Congress would ever suffer.
But Paula was just a 29-year-old trainee nurse who had been working at an Alzheimer’s facility. She had been taking care of a patient when she suffered the seizure that led to the discovery of a brain tumor.
She underwent surgery and radiation and qualified for Medicaid as she began taking interferon beta three times a week for a three-week period, followed by one week off, followed by another three weeks. She continued the routine for year after miraculous year, undergoing scans every three months that showed her cancer remained in full remission.
Malkin later noted that spontaneous remission simply does not happen with glioblastomas. He figured that interferon was the only explanation.
Paula was still cancer-free when she went with her sister, Terrie Oertel, into a Walgreens in Oshkosh to refill her interferon prescription as often before.
“They said, ‘No, it’s not approved,’” Terrie recalled to The Daily Beast. “We were like, ‘What do you mean it’s not approved?’”
The next day, they went to the local Social Security office and were directed from one person to another. They were finally told that when Paula moved a few miles from one neighboring county to another—Fond du Lac to Winnebago—her Social Security disability status and the accompanying Medicaid coverage had become subject to review.
“Then they tell you it’s going to take two months to get approved again,” the sister recalled. “We were like, ‘We don’t have two months.’”
Two months became five before her insurance was reinstated.
And then came a second twist.
Interferon had never been approved for use against glioblastoma and it had been OK’d for Paula only because there had been no alternative. Two new drugs, Temodar and Avastin, had since been approved. Both were considerably more expensive, at more than $25,000 a month compared to $8,000 for interferon. Neither was anywhere near as effective as interferon.
Paula began to experience increasing weakness on her right side. A scan confirmed that the cancer had returned.
Paula’s doctor, Malkin, made urgent pleas to a host of elected officials, saying that her only chance of survival was to get interferon approved again. Malkin emailed then Rep. Thomas Petri.
“I have been practicing neuro-oncology for more than 20 years, yet decisions I wish to make on behalf of my patients are second-guessed or outright denied by representatives of insurance carriers who cannot even pronounce the name of the tumor I am treating,” the doctor told the congressman.
Malkin went on, “My staff and I spend hundreds of wasted hours trying to obtain authorizations and appealing wrong decisions when we could be treating patients.”
The Journal-Sentinel then ran a powerful story detailing Paula’s plight. Presto! The interferon was approved within 24 hours.
But by that time, the tumor had taken a deadly hold. Paula nonetheless fought on and was able to meet her sister’s baby son.
“She got to be an aunt,” Terrie told The Daily Beast.
Two months later, in August of 2009, Paula underwent another brain surgery. She died the following August in an Oshkosh nursing facility, having survived 12 years when she would have been expected to live less than two. She was 41.
“It was a long-fought battle,” Terrie told The Daily Beast.
Terrie wondered aloud if her sister might still be around if she had been able to keep taking the interferon.
“Who knows what would have happened?” Terrie asked.
Malkin felt certain that the interruption of the interferon treatments was responsible for the return of the cancer and therefore Paula’s death
“I have absolutely no doubt about that,” Malkin told The Daily Beast. “I have absolutely no doubt.”
Five months before Paula’s death, then-President Obama had signed the Affordable Care Act into law.
“I’m a fan,” Malkin told The Daily Beast. “In many ways, it’s better than what we had.”
But Malkin and his staff continued to spend too many wasted hours getting authorizations and appealing wrong decisions. The problems accompanied him as he moved to Richmond to become the director of the new Neuro-Oncology Program at Virginia Commonwealth University. His nurse and his nurse practitioner spend seemingly endless hours on the phone with representatives of insurance companies, justifying treatments that have already been approved by the FDA.
“It’s a travesty,” Malkin said.
A nurse had to make almost daily phone calls for a month to get an insurance company’s approval to administer a particular drug to a patient with a brain tumor.
“[The nurse] has better things to do in clinic than this,” Malkin said. “If she’s doing this, she can’t be in clinic evaluating patients… being there to hold a hand. It’s just wrong.”
Malkin is periodically required to speak on the phone with a fellow doctor for a “peer to peer” review of a treatment.
“You’re not getting on the phone with a neuro-oncologist,” Malkin reported. “You’re getting on the phone with maybe a retired ophthalmologist who is trying to get some money in retirement.”
He noted, “I didn’t go to medical school to do this, but that is our life every day.”
For all the troubles those with private insurance have getting treatments approved, a study released last August of 13,600 glioblastoma patients between 2007 and 2012 found that uninsured patients have a tougher time with the disease itself; they tend to have a larger tumor at the time of diagnosis and subsequently a briefer survival time. The same was true to only a slightly lesser extent among those on Medicaid.
“We were expecting that the uninsured would do worse than insured patients, but we didn't expect that Medicaid patients would do significantly worse than [privately insured] patients,” a co-author of the study, Dr. Wuyang Yang of Johns Hopkins University School of Medicine told a reporter.
Part of the problem with Medicaid may be regulations such as seem to have killed Paula Oertel. There are no doubt many more tales concerning not just folks on Medicaid but also the uninsured, even under the Affordable Care Act.
Malkin says that one group is immune from such troubles. Those are the folks wealthy enough simply to pay out of pocket for whatever is needed.
“That’s the 1 percent,” Malkin observes.
Even before his own diagnosis, the ever-feisty Sen. McCain would surely have been among the first to applaud Paula Oertel’s valiant fight and to condemn the unconscionable bureaucratic double twist that sabotaged her.
At the start of the week, just before news broke of his own glioblastoma diagnosis, McCain called on his fellow Republicans to go beyond just trashing the Affordable Care Act and replacing it with Trumpcare as presently conceived.
“One of the major problems with Obamacare was that it was written on a strict party-line basis and driven through Congress without a single Republican vote. As this law continues to crumble in Arizona and states across the country, we must not repeat the original mistakes that led to Obamacare’s failure,” he said in a statement. “The Congress must now return to regular order, hold hearings, receive input from members of both parties, and heed the recommendations of our nation’s governors so that we can produce a bill that finally provides Americans with access to quality and affordable health care.”
McCain did not go so far as to say that every American should receive health care such as the 1 percent—and members of Congress—receive.
But that should be our goal if we want to make America greater than ever before, as great as it should be.
Call it Paulacare.