There were the angry letters and phone calls. There were patients who told him he was fired, and others who accused him of conspiring with drug companies to keep them ill in the name of profit. There was the vitriol being poured into online forums, where he was called a pompous windbag with the bedside manner of Adolf Hitler, a pill pusher and, even, the “King of all Turds”.
He had spent a quarter century searching for a cure for multiple sclerosis, spurred on by being a daily witness to the fear and pain of his patients, but when Freedman urged caution over a proposed new theory of the debilitating disease — something he says he did in the best interest of patients — he was labelled a villain.
“What did we do — other than point out the obvious careful approach to treatment — to warrant this kind of aggressiveness from their part?” asks Freedman, director of the Multiple Sclerosis Research Unit at the Ottawa Hospital. “What have we done to lose that trust? I think we have worked very hard to gain that trust through our meticulous research, our careful approach, our conservative and inquisitive nature, our demand for high standards.”
Neurologists across the country are similarly stunned by the backlash from patients furious with their doctors for not wholeheartedly supporting the theory, developed by Italian researcher Dr. Paolo Zamboni, that clogged veins in the neck and chest trigger the disease.
The doctors say this kind of patient mobilization and hostile response is unprecedented in their field, and they are disappointed their healthy skepticism has been so wrongly interpreted as conspiracy and stubborn arrogance.
Many of these doctors have, until now, avoided speaking publicly about what it has been like to struggle with a small but vocal group of patients who are intent on ignoring and lambasting their best advice. They have agreed to share their thoughts with the Star so they can explain where they are coming from, and give voice to the quieter majority of patients who agree with their cautious approach.
“I guess I wonder if some of us are feeling that we are being penalized for being honest about skepticism, to let people know that yes, this is interesting, but gosh, there isn’t a heck of a lot of evidence to support it,” says Dr. Anthony Traboulsee, a neurologist at the UBC Hospital MS Clinic. “Maybe it’s not the cure and people don’t want to hear that messaging.”
Zamboni postulated that clogged veins — a condition he named chronic cerebrospinal venous insufficiency (CCSVI) — could trigger MS by causing iron to flow up to the brain.
The former vascular surgeon published results in 2009 that suggested a relatively simple procedure to unclog veins, called venous angioplasty, or the so-called “liberation” procedure, held promise to relieve debilitating symptoms.
Months after a national television broadcast and subsequent newspaper headlines spread the word of the theory and liberation treatment, patients began travelling to overseas clinics and paying doctors thousands of dollars to open up their veins.
The CCSVI theory was bolstered by patients who returned home saying they had less pain, more movement and felt better than they had in years. Those who listened to them with great hope have become increasingly frustrated the treatment is unavailable in Canada.
Through online social networking and protesting with placards calling on the federal health minister to resign, they have been demanding everything from a quicker timeline for clinical trials to immediate access to the procedure for anyone who wants it.
“They keep throwing this in our faces: ‘well, it hasn’t been proven. We don’t know if it’s safe yet. We don’t know what the long-term effects are,’” says Andrew Katz, 51, a financial adviser in Ottawa who emceed a patient demonstration on Parliament Hill on Monday from his wheelchair. “Well, we know what the long-term effects are. We’re going to wind up in a wheelchair and we’re going to deteriorate and potentially (die). We know that. That’s a given. That’s a fact, so all of this ‘we need to look after you and that’s why we’re not going to help you’, it doesn’t make sense to me.”
Many were bitterly disappointed when the federal government decided to hold off on funding pan-Canadian therapeutic clinical trials of the liberation treatment after accepting the recommendations of an expert panel convened by the Canadian Institutes of Health Research and the MS Society of Canada that going ahead now would be scientifically and ethically inadvisable.
Doctors were not the only ones feeling the pressure from the angry crowds.
“It was a politically tough decision, but at the end of the day, the minister took the advice of the medical community as she has before,” says Tim Vail, director of communications for Health Minister Leona Aglukkaq.
Freedman was one of the first — and some say the most vocal — Canadian neurologists to voice doubts about Zamboni’s theory, but he says he and his colleagues, although concerned about the safety and efficacy of the treatment, at first believed the plethora of news stories would help the community by bringing MS into the public eye.
That initial enthusiasm, he says, vanished as MS experts watched the breathless reporting feed the outcry for liberation treatment, overpowering their reasoned caution.
“(The) media have actually showed some interest and some compassion for a number of patients that claim they were doing better on the therapy. I think that is fair,” says Dr. Alexandre Prat, a neurologist who directs the Neuroimmunology Laboratory at the University of Montreal Hospital Centre. “The problem is that there are a number of scientific truths that have been presented and that do not support the claims of these Italian scientists and (these have) not been very well presented by the media.”
Prat acknowledged that just as journalists have the responsibility to accurately interpret and convey information — which can be a challenge when it comes to reporting on health and science — so do doctors have a role to effectively communicate their knowledge.
“Everyone is to blame in this story, I think, except the patient. The patients are actually looking for hope.”
That hope has not even been officially dashed, although the medical community has its doubts.
The federal government has said it will support clinical trials if a scientific working group, set up to monitor $2.4 million worth of diagnostic studies into CCSVI sponsored by the MS Society of Canada and its American counterpart, decides they are worth it.
“I guess we have no choice, do we? I mean, there is so much push and pressure,” Dr. Peter Stys, a professor of clinical neuroscience and an MS researcher at the University of Calgary says of the money being poured into CCSVI research at record speed. Stys does not deal directly with MS patients but he does research the disease. “I think if this issue went through (the) normal, regular, sober, peer-review process, it wouldn’t go nearly as far . . . (as) it has at the moment, because the science is just not there.”
Freedman, who has refused to speak to the media for months, says he and his colleagues believe a vocal faction of patients have taken over the message.
“Does the community really want this? Is that what all MS patients want? Because the overwhelming majority of patients I see are too afraid to say anything,” Freedman says. “It is a minority, but they are loud.”
They are so loud they have been shouting down their fellow patients.
Richard Oakey, a 45-year-old Toronto man in the coffee import and export business went to India last May. He ended up not being treated because the imaging performed on him showed his veins were not blocked. He has avoided sharing his experience with other patients.
“People have become vigilantes and (are) bashing doctors and bashing the health care system and bashing the MS Society,” Oakey says. “You know, I’m fully prepared for the hate mail, so to speak.”
Dr. Katherine Knox at the University of Saskatchewan says, as all her colleagues told the Star, that she takes the time to explain her concerns with the experimental treatment — including the risk of blood clots and that a stent in the jugular vein could travel to the heart as it did for one patient in California — and that some say they plan to wait for more research, while others are willing to take the risk.
Knox too has come across things written about her online.
“Many are frustrated,” she wrote in an email. “I wish I could do better for them.”
Katz, the vocal MS patient who has been organizing others through a website he co-founded that demands testing and treatment for all Canadians, shares the frustration of his fellow patients but disagrees with the personal attacks.
“I don’t condone that at all,” Katz says of the online slander spewed against Freedman, who happens to be his doctor too. “I mean, that’s ridiculous. The guy is a freaking neurologist, you know. He spent his life studying this stuff and for anybody to demean him in any sort of way is ridiculous as far as I’m concerned . . .
“It does give you an indication of how high the emotions are around this topic,” he says.
Katz says he did not tell Freedman when he travelled to India in June for the treatment (like Oakey, his testing showed he did not have blocked veins and so it never happened), and was not planning on telling him about his upcoming trip to New York to try again.
“You can’t blame a patient for looking out for No. 1,” Katz says. “You can’t, and you can’t hold anything against the neurologists for defending their position, when they have spent 40 years studying this disease.”
Traboulsee, who took over as president of the Canadian Network of Multiple Sclerosis Clinics from Freedman in June, says he hopes the liberation treatment controversy will not permanently divide the community.
“I think people should have their opinions on this topic and certainly will have their passions, but it would be a mistake to let this specific issue divide us, to let it polarize people, because the motivation on all sides is the same motivation: we want what is better for people,” Traboulsee says.
Freedman, who chose to specialize in MS after a friend with the disease asked him to find a cure, talks openly about his general disappointment with what has happened in the last year. He says he is upset about the anger directed at him and worried the field won’t recover from the turmoil and will split. He also says he doesn’t blame patients, that he understands their desperation.
“There are enough patients who are feeling fairly happy with the care they are getting — yesterday I had somebody give me a hug — I feel good about what I’m doing.”