Paul Gothard is a music professor at Lake Erie College. He's a teacher, a composer and always busy. In his spare time, he lifts weights, works in the yard and he's never smoked.
So when the 61-year-old began having trouble breathing last year, he was shocked that doctors diagnosed him with lung cancer.
"This was unusual. 'Caught us all by surprise, including the aggressiveness of it, it turned out to be much more advanced than we had anticipated and more difficult to get under control," Gothard says
First, doctors at Case Comprehensive Cancer Center in Cleveland removed Gothard's right lung and prescribed traditional rounds of chemotherapy. That slowed the cancer but it didn't stop it.
By February of this year, Gothard's remaining lung - the left one - was filling with fluid and suffocating him. His doctor guesses he had only weeks to live. That's when Gothard's oncologist used genetic testing to determine the next round of therapy. They found a gene mutation that is associated with breast cancer - not lung cancer.
Running out of time, Gothard's doctor decided to try a drug known to work well for breast cancer patients who suffered the same specific genetic mutation.
"And it did what it needed to do to allow me these extra four months, allow me to feel good while being here," Gothard says.
Gothard's insurance company, though, has declined to pay for the treatment. Susan Pisano, a spokeswoman for the industry, says insurers have specific criteria to determine whether to pay, those include clinical trials and federal approval. Drugs prescribed based on a single genetic test often do not meet those standards.
"It's very important to have evidence that something is safe for a patient. Patient safety is really paramount," says Pisano, who is with the trade group America's Health Insurance Plans.
The insurance industry says treatment based on genetic testing can send costs "through the roof." And, those are concerns of employers, as well. According to a recent study by the Pharmacy Benefit Management Institute, only seven percent of employers currently provide coverage of genetic tests.
Doctor Stan Gerson understands this. He heads the Case Comprehensive Cancer Center and University Hospitals' Seidman Cancer Center where Gothard is being treated.
Gerson says the cost of cancer treatment can range from $3,000 to $20,000 a month. So… if insurance doesn't cover it, he says patients like Gothard are left with few options.
"Right now, the easiest way to have access is to pay for it all yourself because insurance carriers aren't really comfortable," Gerson says.
In June, Gerson invited cancer experts from around the country to Cleveland. They spent a day talking about the challenge of convincing insurers to pay for therapies based on genetic testing. The biggest obstacle they face is a lack of evidence. The National Cancer Institute confirms that it doesn't track patients - like Gothard - who are being treated because of genetic testing.
But Gerson and the cancer center are in a unique position to drive the conversation: They are one of 41 centers nationwide given top designation and funding from the National Cancer Institute.
NCI's latest grant to Case will fund the centers operations and, as a result, support Gerson's effort to establish a database that tracks genetic testing and cancer therapy. With the help of other cancer centers across the country, Gerson hopes to provide data that more insurers will find convincing.
As for Paul Gothard, the new treatment hasn't cured his cancer. He's in hospice care now and hopeful about genetic testing's future in targeting cancer treatments.
"I'm quite limited but I'm grateful. I know that the lung is pretty much consumed with tumor but I'm exchanging oxygen, the lung is still functioning on some limited level - enough to get me here," Gothard says.