A mayor asks the Health Minister: 'Are you really just going to let me die?'

Trent Hills Mayor Hector Macmillan is seen in a photo he posted on his website. It was taken when he relationship with the Liberal government was happier, at a funding announcement in 2012.

Trent Hills Mayor Hector Macmillan had an unusual question for Health Minister Eric Hoskins this week: “Are you really just going to let me die?”

Macmillan put the question to Hoskins at the annual Association of Municipalities of Ontario (AMO) conference, where local leaders have the chance to ask a panel of Ontario government ministers any questions they want. The question-and-answer session is colloquially known as the “bear pit.” One assumes that’s because the ministers feel like they’ve been thrown into a pit of bears — bears that are mayors and reeves with tough questions, usually about electricity rates, local roads and policing costs.

But Macmillan has been diagnosed with stage four pancreatic cancer and that’s what he decided to ask about.

“As of yesterday afternoon, I have joined the ranks of many Ontarians who are being murdered by the MOHLTC [Ministry of Health and Long-Term Care] and Cancer [Care] Ontario, who offer no solutions for pancreatic cancer except palliative chemo,” he began.

Macmillan said there’s a promising treatment but it isn’t yet being done in Ontario. He can’t wait, and OHIP won’t pay to send him out of the country to get it, because it remains an “experimental” procedure.

“It’s only considered ‘experimental’ in Ontario because you don’t want to pay for it, or pay for my and others' out-of-country surgery in Kentucky,” he told Hoskins. “My doctors have told me I will be dead by Christmas, this coming Christmas without it. Minister, why are you killing us? And are you really just going to let me die?”

Macmillan’s a well-known local politician around Trent Hills, a municipality located between Peterborough and Belleville. He was first elected mayor of the town 12,600 in 2003. His father, Hector Sr., was mayor of the Town of Campbellford from 1982 until he died in office in 1990. His grandfather served on the town council for 25 years.

Macmillan recently sold the gas bar he ran for more than 20 years, and purchased a bowling alley. He most recently made local news for posing for a photo for an article about a barbershop opening in Campbellford.

He was more than happy to talk to QP Briefing about why he accused the Ministry of Health of murdering him, because there are things he wants people to know.

Macmillan was experiencing pain, which led to a diagnosis of pancreatitis; after two CT scans, doctors uncovered a tumour in his pancreas earlier this year, he said.

“That was bad news, because everyone knows that if you have pancreatic cancer, that’s not a good thing.”

According to Pancreatic Cancer Canada, 92 per cent of patients die within five years of their diagnosis, and 75 per cent of patients die within the first year.

Macmillan began doing some research on his own and pushing the doctors he saw for answers. That led him to learn about irreversible electroporation (IRE) with the Nanoknife System. It’s a surgery that can kill cancerous cells with short pulses of electrical currents. It’s been shown, according to a study published last year, to nearly double the overall survival of patients with locally advanced pancreatic cancer.

But it isn’t used for pancreatic cancer in Ontario, and it wasn’t presented to Macmillan as option by his doctors.  “They don’t talk to you about IRE, they only tell you about palliative chemo, chemo until you die.”

Macmillan learned that Toronto's University Health Network has a Nanoknife System and uses it to treat liver cancer. The hospital is interested in developing a protocol for its use on pancreatic cancer, but it is not finalized yet. A spokesperson for the hospital confirmed this.

“The big machine turns so slow," Macmillan said, “and meanwhile I’m dying, and so are others.”

Macmillan met with two specialists at the hospital to see if they’d sign off on him having the procedure — if not at their hospital, then in the U.S. In Ontario, patients require support from a specialist for out-of-country procedures to be approved.

One of specialists he saw was Dr. Steven Gallinger, head of the hepatobiliary and pancreatic surgical oncology program.

“Basically, what Dr. Gallinger said was you’re not going get a surgery in Toronto, you’re not going to get a surgery in Kingston,” according to Macmillan. “He said, ‘You’re not going to get a surgery in North America, you’re done.’

“My sister is 70 years old and she’s a tough woman — she’s a downtown Toronto real estate broker — and he made her cry,” he said. Another doctor at the hospital gave him the same answer.

So, Macmillan flew to Kentucky on his own and met a surgeon with expertise in using the Nanoknife for pancreatic cancer, Dr. Robert Martin, who said Macmillan was a candidate for surgery. “He said, ‘You want that tumour out, we’d have it for you by Wednesday,’ ” Macmillan said.

Martin gave him a life expectancy of five years if he gets the surgery, Macmillan said. “Those are pretty good odds, considering I’d been given Christmas.”

However, the surgery comes with a cost of up to US $250,000, he said. The surgery itself is only $12,700, but the hospital stay costs $115,000, and follow-up care can run up the expense, Macmillan said.

On the morning of the AMO conference, Macmillan had received a call that his application to OHIP for the out-of-country medical treatment had been denied. So that’s what prompted him ask the minister why he’s “killing” him.

But the story is a little more complicated: For one, Macmillan had esophageal cancer five years ago, which has complicated his diagnosis. But more importantly, when, or if, the University Health Network develops its protocol for Nanoknife surgery on pancreatic cancer, it will likely exclude patients such as Macmillan.

Gillian Howard, vice president of public affairs and communications at the University Health Network, said that, while there’s interest within the hospital for developing this protocol, it’s only for pancreatic cancer cases of stage three or less, as there is research that demonstrates it is not useful for stage four tumours. The study that found it could double survival, for example, examined only stage three — or locally advanced tumours.

The lymph nodes in Macmillan’s chest were affected and his cancer is stage four. (Macmillan says the cancer is now gone from his lymph nodes, and credits an alternative medicine he bought in Mexico. However, his doctors say it’s because of the chemotherapy he’s undergone.)

In any case, Macmillan sees his chances of survival as much higher with the tumour in his pancreas gone. “I use a firefighter’s analogy – why don’t we put the fire out first, and the hotspots later,” he said.

At the AMO conference, Hoskins answered his question. He expressed compassion for Macmillan. He said, that despite being a doctor himself, he relies on specialists to make the policy decisions on what health care procedures the province will pay for, at home and abroad.

“The difficulty that we face is we live in a society where we both want to give opportunities to individuals like yourself, particularly lifesaving opportunities, but at the same time we want to base our decisions on best practices and science and evidence,” Hoskins said. “So I endeavour to, in that regard, let the experts make the decision on all our behalf. And it’s regrettably often a decision that patients can’t fathom, and I fully understand why that is.”

Hoskins committed himself to finding out why that decision was made and said he’s deeply troubled by it, and sorrowed by Macmillan's experience with the health care system. However, he reiterated that it’s a decision that rests with specialists.

By law, the approval process isn’t political and it can’t be overturned by the Minister of Health, Hoskins’ office said in a statement. “Our government works hard to ensure that Ontarians get access to the care they need here in Ontario. We rely on the medical expertise of our doctors to recommend the best course of care for patients,” the statement says. “Out-of-country care cannot be provided without a physicians’ signature and support from an Ontario specialist.”

Macmillan isn't satisfied by the answers he’s gotten anywhere in Ontario. He sees the doctors as saying, “Nope, can’t do it, the policy is written.”

“Well, as you know, I’m in the business of writing policies and I’ve literally seen where a policy is written one day and it’s out of date the next, because somebody hasn’t thought of something,” he said.

Despite his experience so far, Macmillan wants people to know they can have hope and take action on their own health. “Challenge the experts, challenge your doctor, don’t take no for the answer,” he said. His next step is to try find the money to pay for the treatment himself, or to head to Mexico for alternative treatment.

He also wants revenge upon the system.

“If the province of Ontario is not going to fund me, it may take my last dying grasp, but I’m going to take this government down,” he said. “Because it’s time. They’ve messed with our hydro system, they’ve messed with everything. But now they’re messing with our health-care system and it’s the last straw.”