Fund robotic prostate cancer surgery, say local patients
HAMILTON — Ontario patients are fighting for the province to fund robotic surgery to treat prostate cancer, which is currently paid for by donations at St. Joseph’s Healthcare in Hamilton.
The Ministry of Health says it hasn’t decided yet if it will follow a controversial recommendation against provincial funding made by the Ontario Health Technology Advisory Committee in July.
Patients were not consulted before the Health Quality Ontario committee gave its advice, and they want their voices heard.
“I’m so shocked that we’re not embracing this technology,” said Bill Faulkner, who had the surgery just over a year ago in Hamilton. “To go backwards is unthinkable.”
The men are speaking out about their concern after cabinet minister Liz Sandals sent an email to one of them suggesting the province supports the recommendation.
“The ministry agrees with OHTAC’s assessment that the use of robotic systems in prostatectomies should not receive a special, higher payment than use of the regular surgical approach,” states the email dated Sept. 20 to Glen Tolhurst from the Prostate Cancer Canada Network in Waterloo Wellington.
The Ministry of Health says “wires may have been crossed” and maintains it is still reviewing the advice.
A statement from Sandals’ spokesperson,
‘I’m so shocked that we’re not embracing this technology’ — Bill Faulkner, Waterloo
Matt Ostergard, on Sept 22 clarified “no decision has been made.” The ministry says it’s consulting Ontario’s surgical training programs and other stakeholders before coming to its own conclusion.
But patients want to know why the ministry isn’t asking them what value they place on a minimally invasive procedure with a shorter recovery time and less blood loss compared to the alternative open surgery, which has a much larger incision.
“Talk to us,” said John Baxter, a 57-yearold management consultant from Cambridge who had the surgery at St. Joseph’s just over a year ago. “The mental struggle we go through is so difficult. To add any other physical barriers to me is inhuman, and how do you quantify that. The government needs to go back, revisit this and talk to the people who it affects.”
Baxter was one of six men who have started a letter-writing campaign to tell MPPs about how they were up and walking within hours of their surgery, left the hospital after one night, experienced so little pain that some didn’t take any medication and were back at their jobs, working from home, in under a week.
“The worst part of the whole surgery was wearing a catheter for two weeks — that was more obtrusive and more painful than the surgery,” said Baxter. “Surgery is becoming less and less intrusive. Why would we digress and go back to a surgery that’s more intrusive and has the person incapacitated for a longer period of time?”
The committee chose not to include patient voices in its 172-page report.
“We concluded that direct patient engagement for this health technology assessment would provide limited value and impact to this project,” states the report.
Patients could not disagree more with the committee’s conclusion.
“Not dealing with the patients is a glaring omission,” said John Clark, a 73-yearold retired compliance manager from Cambridge who had the surgery in Toronto in February 2013. “It’s very discouraging to hear the recommendations especially because I have two sons. It’s distressing to hear we’ve decided to take steps backwards.”
Jim Oakley, who had the surgery in Hamilton in January, believes patient views could have made a big difference.
“I think they didn’t contact the patients because they didn’t want to hear the positive side,” said the retired technologist from Waterloo. “I think the report is incomplete.”
One of the reasons the report left patients out was the assumption that choice over surgery type “is often not within a patient’s control,” so there is uncertainty over how much “patient preference impacts.”
But all six men say their doctors gave them the options of radiation, open surgery or going to another centre for the robotic procedure, and left the decision in their hands. They describe taking great care to do their “due diligence” before making a choice.
“I didn’t know anything about prostate cancer or the prostate — I didn’t even know I had one,” said Walter Pfeifer, a retired tool and die maker from Kitchener who had the robotic surgery 10 months ago in Hamilton. “I talked to all the guys who had robotic surgery and I talked to the guys who had open surgery.”
They worry that choice will be taken from men in the future if hospitals have to continue to rely on donor dollars for robotic assisted prostatectomies instead of becoming OHIP funded as St. Joseph’s had hoped.
“I have two sons and now a grandson,” said Ken Steele, a 61-year-old accountant from Waterloo who had the surgery in Toronto in 2010. “Let’s not cut out the options.”
Karen Faulkner says she would sell the house if that’s what it took to get her Waterloo family robotic surgery.
“It’s such a scary thing,” said her 67-yearold husband Bill Faulkner. “I don’t care how tough you are. You and your family want the best treatment. I will not accept that they do not have the choices.”
The report concluded there is not enough evidence that the robotic procedure is better than traditional surgery for radical prostatectomy. It found no justification for the province to pay an extra $800,000 to $3.4 million a year for the technology.
“The cost of a longer recovery, the cost of people being out of business and the cost of a longer bed stay, where is that being generated into this cost?” said Baxter.
The men say the added “pain and suffering” that goes with a more invasive procedure has a cost that is not reflected in the recommendation.
“It’s the human side of it,” said 69-yearold Waterloo teacher George Malon. “That is so critical, the feedback from the patients.”
They talk about the added value of the technology attracting the best and brightest health-care workers to the province.
“By having the state of the art present in Ontario it is going to attract better and more physicians,” said Steele.
And they envision a future where doctors in Hamilton can use the technology to remotely operate on those who currently have trouble accessing the best care.
“How great would that be for people in remote areas,” said Faulkner. “People around the country don’t have access to these world-class surgeons.”
But their main motivation is standing up for the one in seven men who will develop prostate cancer and potentially want a less-invasive option.
“In my opinion, if the government of Ontario were to take this away, I think it would be a disservice to men,” said Baxter. “As a person who has gone through cancer, it never leaves me. I think about it every single day of my life. The surgery part of it had the least effect on me. It was the easiest experience.”
Why would we digress and go back to a surgery that’s more intrusive? JOHN BAXTER, CAMBRIDGE