Too Rare To Cover?

BREMEN — Jake Sahlhoff, 26, of Bremen, is currently undergoing treatment for a rare and aggressive form of eye cancer at the Bascom-Palmer Eye Insititute at the University of Miami, Fla.
Besides the stress that comes with being sick and far from home, Sahlhoff is also concerned with one important thing — how to pay for his treatment.
Sahlhoff’s health insurance plan, through his job at Gurley Leep, is not covering the procedure.
“We left for Florida Aug. 5, and headed in for the first round of chemo Aug. 20,” said Jake’s sister-in-law Amber Sahlhoff. “That morning, at 7:30 a.m., the doctor got an email from the insurance company saying that they were denying the treatment, that the treatment is not the standard of care.”
Gurley Leep has a self-funded health plan for its employees, administrated by North America Administrators, a company based in Nashville, Tenn. Phone calls and an email from the Pilot News to the company went unanswered this week, and Gurley Leep’s attorney, Michael Nader, said via email that he cannot discuss Jake’s case with the media due to HIPAA.
Jake is being cared for at Bascom-Palmer by Dr. Pasquale Benedetto.
Dr. Benedetto plans to remove the cancer in Jake’s eye by delivering chemotherapy right to the tumor, then conducting surgery to remove the tumor.
Dr. Benedetto said that Jake’s disease is so rare that there is no “standard of care.”
Bascom-Palmer has been named the number one facility in opthalmology in the country by the U.S. News and World Report for nine years in a row, which is part of the reason the Sahlhoff family chose the hospital for Jake.
Only 19 total patients with Jake’s disease have been treated at Bascom-Palmer.
“Jake has a very rare tumor of the lacrimal gland,” said Dr. Benedetto. “Myself and (another opthamologist) developed a program to give chemotherapy through an artery. (The patient) gets a very high concentration of the drug, and they get this treatment twice or three times before going into surgery.”
By treating Jake’s tumor in this way, rather than cutting out the tumor immediately, Dr. Benedetto said that Jake has a higher chance of survival.
“We think this is a highly-beneficial treatment, and many other ophthalmologists in the country have sent their patients here for this treatment,” said Dr. Benedetto. “We’ve never had an insurance company deny coverage, including for one patient from the Canadian health system who came here for the treatment.”
Insurance companies that have covered the treatment include Aetna, Cigna, and Blue Cross, according to Dr. Benedetto.
He also said that Medicare and Medicaid have also covered the treatment.
“I sent (North America Administrators) copies of our article on the treatment, a list of insurance companies that have covered it, and I’ve spoken to two medical directors,” said Dr. Benedetto. “The real issue is, what is the best treatment for this kid, who is young and has a long life ahead of him — unless this cancer kills him. It seems unreasonable to consign the patient to the ‘standard of care’ when there really isn’t a standard of care.”
Dr. Benedetto continued, “To me, it’s just arrogant for any insurance company to…tell the number one eye hospital in America that we don’t know what we are doing. Jake is in limbo here, and we don’t have very many options.”
Jake began treatment this week, and his girlfriend Ashlee Jennings said that the two doses of chemotherapy have already exhausted him.
“He’s okay,” said Jennings Friday. “He hasn’t eaten much of anything, and the right side of his face looks like he was hit with a Wiffle bat, because of the swelling. The doctors say that the swelling is a good sign, though, because that means he is taking the chemo really well.”
Jake’s family is paying cash for the procedure.
“The kid is getting the treatment, at his own cost,” said Dr. Benedetto. “(The family) paid cash to get the treatment. Where they are getting it or how, I don’t know. I’m being forced to make limitations because of the cost, and that’s just unfair.”
Jill Manges, Sahlhoff’s attorney, said that the family plans to file suit against North America Administrators.
“(North America Administrators) is saying that what Dr. Benedetto is doing is experimental, and it’s not,” said Manges. “Dr. Benedetto has been doing this treatment for 25 years. I think (the company) is looking for some loophole to not pay, because it’s going to cost thousands and thousands of dollars. They’ve started the treatment, but with money that the family scraped together. They shouldn’t have to do that when Jake (was paying for health insurance coverage).”
The Sahlhoff family has started a Facebook page to garner support for Jake called “Jake — Faith, Focus, and Finish.” Friends, family, and anyone interested in Jake’s situation can visit the page for regular updates.
They’ve also organized a dinner fundraiser for Saturday, September 29 at Bremen Missionary Church. The dinner is from 5 to 9 p.m., and tickets are $10. Visit the Facebook page, for more information.