Update 8/28/2012: A Facebook Page supporting Jake as he goes through his treatment is up and running. Also there is a dinner fundraiser set up for Jake and his family on Sunday September, 29th at the Bremen Missionary Church from 5PM-9PM. Tickets are $10. Visit the Facebook page for more information and to see updates on Jake's progress.
(South Bend, IN 8/27/2012) -- From his Florida hotel room, about 13,000 miles from home in Bremen, Jake Sahlhoff tells us he's trying to stay positive. "Right now I'm not in too severe of physical pain," he says. "I'm a little bit just more kind of distraught, in a state of a little bit of panic because my insurance company has backed out at this point."
The 26-year-old was having problems with his eye. Three months ago he says doctors diagnosed with a rare form of eye cancer. They told him he had a tumor in his lacrimal gland.
"It doesn't get any more serious than this," Sahlhoff says. "I've almost had to kind of flip a switch and turn it off a little bit and distance myself from it because it makes your head spin."
Sahlhoff is getting treatment at the University of Miami's Bascom-Palmer Eye Institute, which is ranked as the number one eye hospital in the country by U.S. News and World Report.
He's under the care of Oncologist Dr. Pasquale Benedetto. "We decided his whole treatment and then his insurance company balked at covering this treatment plan because they said it was not standard of care," says Dr. Benedetto. He says what the insurance company is considering "standard" is to go in and remove the tumor right away. Dr. Benedetto says his experience shows it's better to first put a catheter in, send chemo directly to the tumor, attack the tumor and then remove it after it shrinks.
"For me, for the insurance company working with the number one eye hospital in the country, working with extremely rare disease, that we don't know what we're doing and that they know better is outrageous," Dr. Benedetto says.
Dr. Benedetto says the list of insurance companies that have approved similar procedures includes "Aetna, Cigna, Blue Cross of several places, Medicare and Medicaid." He says he's provided Sahlhoff's provider, North America Administrators, with data and a study he's written supporting the benefits of the procedure, but so far the company hasn't budged.
"There are only eight patients and every one of those was alive more than ten years. That compares to a group of patients treated with quote 'standard treatment,' which the number of patients alive at ten years is under 30 percent," he says.
We asked North America Administrators how it makes a decision whether to approve a treatment like the one Dr. Benedetto is recommending for Sahlhoff.
"We have no comment," a company spokesperson told us by email.
Sahlhoff is going forward with the procedure anyway. He was admitted to the hospital Monday afternoon. While he says he is not getting financial support from his insurance company, he is getting encouragement from folks back home.
"It's amazing," he says. "My dad says he's got people coming up to him everywhere he goes whether it's the gas station, anywhere he goes people are just coming up to him telling him they're praying."
