Small-town mayor feels ‘betrayed’
OHIP refuses to fund U.S.-based experimental cancer treatment
The mayor of an Ontario town says he’s been “sentenced to die” after the province declined to fund what he says would be a life-saving medical procedure in the U.S. to treat his pancreatic cancer.
“I feel absolutely betrayed,” Trent Hills Mayor Hector Macmillan told the Star on Thursday, adding that he will be appealing the decision by the Ministry of Health and Long-Term Care.
Macmillan was diagnosed with stage 4 pancreatic cancer in January. However, he claims a combination of chemotherapy and drinking an herbal elixir from Mexico has reduced the cancer to stage 3.
Through online research, Macmillan discovered a treatment called irreversible electroporation, also known as IRE or the brand name NanoKnife, intended for use on otherwise inoperable tumours. Needles are inserted into and around the tumour and short pulses of electricity are fired between the needles, destroying the tumour, but leaving the surrounding tissue unharmed.
The first NanoKnife surgery in Canada was performed at Toronto General Hospital in 2013; however, the NanoKnife has only been used on patients with stage 3 liver cancers, University Health Network spokesperson Gillian Howard said in an email. As well, she wrote, the treatment is still considered “experimental” for some stages and locations of tumours.
“We have not used the NanoKnife for pancreatic tumours and, to date, research has demonstrated that it is not effective for Stage Four cases,” Howard said, adding that there is interest in doing a clinical trial using NanoKnife to treat stage 3 and lower pancreatic cancers, but that fund- ing needs to be secured first.
Macmillan said he approached Toronto General and Dr. Robert Martin at the University of Louisville Hospital in Kentucky, a leader in NanoKnife surgeries. Toronto General turned him away, Macmillan said, but the University of Louisville Hospital assessed and deemed him suitable for surgery.
However, the total cost of medical treatment in Kentucky would top $320,000, Macmillan said — a price he can’t afford on his own.
His doctor put in a request to the ministry to cover the out-of-country care in May.
It was denied in a letter Macmillan got this month, which he provided to the Star.
The ministry rejected the request because, among other reasons, the “services for which funding is sought are experimental” and “not medically necessary.”
“At this time, no local clinical practice guideline is recommending the use of the requested service . . . in patients with stage IV pancreatic cancer,” the letter said. “A (2012 study) showed that the use of IRE in three patients with metastatic stage IV pancreatic cancer did not improve overall survival. In fact, ‘all three patients with metastatic disease at IRE died from progression of their disease.’ ”
It also suggests that palliative radiation therapy “may provide an equivalent local control.”
Macmillan said the ministry won’t acknowledge his claim that his cancer is now stage 3, which would make him a viable candidate for the NanoKnife, and that by denying to fund out-of-country care, has essentially handed him a death sentence.
“(My doctor said) I’ll be dead by Christmas. What will ultimately kill me will likely be the cancer will jump to my liver, and that could be happening as we speak,” he said.
Macmillan appealed to Health Minister Eric Hoskins during the Association of Municipalities Ontario annual conference earlier this month; a spokesperson for the minister’s office said Hoskins asked the ministry to review the decision, which found “that all appropriate processes were followed.”
Macmillan feels “absolutely betrayed.”
“I’ve supported our health-care system on so many levels, and to find out about the Ontario standard of care and how it works . . . It’s just shocking. What it comes down to is there’s a limit on how much they’ll spend on you . . . We all live inside (a) box and if you step outside that box, either by choice or by fate, you’ve got a problem on your hands and our government will do little to help you.”
Macmillan is appealing the decision and said he also plans to ask the Ontario Provincial Police to investigate the ministry to see if it’s been “deliberately rigging the application process for (out-of-country care) so that they don’t have to pay.”
In the meantime, local residents have set up a GoFundMe campaign and trust account to raise money to help cover the cost for Macmillan’s treatment, a gesture he described as “humbling” and “overwhelming.”
As of Thursday afternoon, the campaign had raised just over $19,000 out of a goal of $100,000; Macmillan said he’s “praying” for its success.
“I just hope that all Ontarians will be able to help me out. I’ll do everything I can to return the favour in the future if I survive . . . I really appreciate what they’re doing for me.”
Trent Hills is an amalgamated municipality in Northumberland County, which includes Campbellford.