What's the real reason for resisting help for people with MS?

Paulo Zamboni must have been hanging out with the marketers too long when he coined that cursed phrase “liberation therapy” for a garden-variety angioplasty.

Maybe if the Italian doctor hadn’t made it all sound quite so fancy and amazing, we’d just be doing what we always do for people with blocked veins, giving them angioplasties to open things up.  Instead, we’re acting like it’s some unheard-of procedure and putting up a real fight to stop people with MS from trying it.

You probably know the story by now. Zamboni tried angioplasty on people with MS to test his theory that the devastating illness might be caused by blocked veins that affected blood flow in the brain. Patients responded in near-miraculous ways, and the “liberation therapy” was quickly news all over the world.

But even as people with MS grew hopeful at the news, a massive resistance was building among governments, doctors, MS support groups and virtually anyone else with a professional tie to the issue.

On the one hand, it’s understandable.

Zamboni didn’t do the double-blind, control-group kinds of studies that are required in countries like Canada.  His theory goes against everything we think we know about MS, challenging the common wisdom that it’s an incurable auto-immune disorder best managed through lifelong drug therapy.

On the other, what’s this wave of resistance really about? More than 35,000 angioplasties are performed in Canada every year, 99 per cent of them without incident. Other than touting it as a potential cure for MS, Zamboni isn’t advocating an unusual or dangerous procedure.

 So why are the MS professionals so resistant to even considering that people with MS might have blocked veins? Why are we forcing ill Canadians to travel to other countries on their own dime just to get a scan to confirm whether their veins might indeed be blocked? Why are we making it so hard for desperate people to hold onto hope of reclaiming at least a little mobility?

“Right now, it’s my only hope,” says Sharon Kristiansen, a Victoria woman who has lived with MS for 31 years. “Maybe it would mean that one day I could walk again. But if not that, then at least maybe I could get more feeling back in my fingertips. The slightest things make a difference.”

I’m not a conspiracy theorist, but the power of the pharmaceutical companies can’t be underestimated when trying to understand the resistance.

On average, people with MS use $20,000 to $40,000 worth of prescription drugs every year to control their symptoms. (Kristiansen’s annual drug costs are $25,000.) Onset is typically between ages 20 and 40. MS isn’t noted for shortening your lifespan, so many people live 40 to 60 years with the disease.

Close to three million people around the world have MS, including 55,000 Canadians. Based on my rudimentary math calculations, that means that just the current crop of Canadians with MS will use between $44 billion and $134 billion worth of prescription drugs over their combined lifetimes.

Assuming people in other countries are also paying at least $20,000 a year for drug therapy and living with MS for the same length of time, we’re talking a mind-blowing $2.4 trillion worldwide  just to treat the people who have the disease right now.

That’s a lot of sales at risk. I know that’s an ugly thing to say, but can we honestly feel confident that we’re exploring potential cures for MS when that much money is at stake?

Drug companies are very good at public relations, to the point that everyone from researchers to doctors to advocacy groups and “grassroots” health organizations ends up compromised. Case in point: The Multiple Sclerosis Society of Canada.

Kudos to the society for issuing its first-ever proposal call last fall for further research into Zamboni’s theory. That can’t have been an easy decision given that drug companies donate half a million dollars or more every year to the society.

Six drugs are approved for use in Canada for the treatment of MS. The manufacturers of five of them were listed as major donors in the MS Society’s 2008 and 2009 annual reports.

Just four donors in the country gave at the top level last year, with gifts of $100,000 or more. Two were drug companies.

Is any of that proof of something afoot? No. Zamboni’s theory challenges the status quo in all kinds of ways, and for all I know the resistance is simply about sound medical practise.

But for the first time ever, there’s a glimmer of real hope on the horizon for people with MS. I just find it odd that we’re putting so much effort into raining on their parade.

  

Why some of our biggest problems just drag on (and on)

My late father took to calling me “Little Miss Know-It-All” once I became a columnist. My mother still teases me about it.

It’s a funny thing, being an opinion writer. You have to be out there with something to say - otherwise, what’s the point? It seems I’m always weighing in on one thing or another, and never mind that I might not have known the first thing about the subject prior to that. 

I wish I really did know it all, because wouldn’t that just be the coolest thing? But what journalists are good at is identifying problems. That doesn’t mean we know how to solve them.

Still, you learn a lot after years of writing about problems.  The upside of journalism is getting to see big thinkers working together with the information, insight and team skills needed to solve a problem. The downside is realizing how often we get stuck, and how the ruts in the road just keep on getting deeper in the places where we’ve spun our wheels a hundred times before.

Every positive change - gay rights, fewer motor-vehicle deaths, lower dropout rates, higher birth weights, environmental protection, equality for women, on and on - came about because people who knew their stuff simply got to it and figured things out. We’re impressive problem-solvers when we want to be.

Yet other problems linger on. Why? In my opinion, it usually comes down to a lack of honesty within the process and conflicting interests. We talk about our commitment to the issue at hand, but not about the hidden agendas and politically influenced decision-making that derails any problem-solving process.

We do not badly in the first stage of problem-solving, where we’re gathering information. Think of all those fabulous reports that have come out of the many royal commissions, task forces and inquiries we’ve created to help us with stubborn, complex issues.

But so many of those recommendations never make it off the shelf. We appear genuine in our search for answers, but rarely are.

I was part of a corporate process years ago in which complex problems got addressed by bringing anyone with a piece of the issue into the same room to figure things out as a group. It’s amazing how quickly a problem can be resolved when everybody puts aside their own self-interest and works for the greater good.

But there’s the sticking point. If anybody is there for the wrong reason, or less than honest about adopting the solutions that emerge from the process, it all goes wrong pretty quickly. You need to be willing to compromise your own interests to solve a problem, and honest in talking about the challenges. Change can’t happen otherwise.

An example: We can’t possibly solve the problem of people with mental illness falling into homelessness until those with the power and the funding base to change that are honest about the level of service needed and the fact that we’re not even close to having enough.

We can’t wish everybody off our streets while at the same time slowing the building of subsidized housing across Canada to a trickle and gentrifying every neighbourhood to suit the middle-class.

We can’t address the crisis in our health, social and justice systems caused by drug addiction without acknowledging that we’ve stripped down services so aggressively in the last decade that treatment these days is readily available only if you’ve got  money to buy private care at $10,000-plus a month.

We can’t address the needs of the 35,000 British Columbians who live with mental handicaps while cutting and capping vital supports that were never generous in the first place. We can’t feel good about expanding disability services to include people with Fetal Alcohol Spectrum Disorder while at the same time cutting overall funding so that everybody will receive less help.

We can’t help people with brain injuries by scrapping a community program that used to help them make the transition from hospital to home, as we did two years ago. That not only exacerbated problems for that group, it complicated potential solutions around homelessness: Brain injury is a fact of life for more than half of the people living on our streets, and the reason why many are homeless in the first place.

We’ll solve our tough problems when we’re honest about them, and cognizant of the political spin and self-interest that undermines the process. 

I’d like to say the day is soon coming. But Little Miss Know-It-All isn’t at all sure about that.

There's a great new report out from the Vancouver Board of Trade and the Justice Institute that really puts some solid figures to the argument that an ounce of prevention is worth a pound of cure when it comes to social services to children and families.
We all know that - even government knows it. But the reality is that time and again we ignore the wisdom and scrap preventive services, leaving some future taxpayer to foot the bill for all the crisis costs that will come due once the child who didn't get the support they need grows up into the adult awash in poor health outcomes, criminal involvement and low productivity.
Read the report here. 

I can relate to that poor bus driver who got lost on the way to Bamfield with a busload of students. I've done that drive, and found myself wondering many times along the way which was the most likely outcome: That I would take a wrong turn and get lost forever on the winding gravel roads between Victoria and Bamfield, or be killed by one of the giganto super-size logging trucks whooshing past me.
Fortunately, I happened to pick up a mom-and-son hitchhiking duo a couple weeks ago on a drive back to Victoria from Courtenay, and they hailed from Bamfield. The son gave me very sound advice for staying on the straight and narrow while driving to Bamfield: Follow the power lines.
Either that or drive in sensible fashion to Port Alberni and take the Lady Rose steamboat in. Lovely way to see Bamfield.

Thank you, UBC researcher Kate Shannon, who wrote this piece for the Canadian Medical Association Journal this month. Note the tremendous surge in arrests for outdoor sex workers in Canada due to short-sighted changes in the communications law in the 1980s, and with zero improvement in the lives of sex workers despite a lot of talk around that time of how the new laws were going to "help" women. We can't let them add another bad, poorly considered law to the mix by toughening up sentences for keeping a common bawdyhouse.

From the September edition of the Canadian Medical Association Journal:

(All editorial matter in CMAJ represents the opinions of the authors and not necessarily those of the Can adian Medical Association.)

The hypocrisy of Canada’s prostitution legislation

Often described as the world’s oldest profession, the exchange of sex for money has always

existed and will continue to exist worldwide.

For many, the sex industry evokes a sense of moral unease, and divides feminists and society alike on whether it is an oppression and commodification of women, or a woman’s right and choice to sell her body. Canada’s federal legislation reflects this divide: The buying and selling of sex among consensual adults has always been legal, yet criminal code provisions on communicating, procuring, bawdy houses and living off the avails of prostitution make it virtually impossible to work legally in safer indoor settings.

Against this backdrop, the numbers of missing and murdered women continue to swell in Canadian cities and street-involved women engaged in sex work experience some of the worst health outcomes in our society, including drug-related harms, trauma, and HIV and other sexually transmitted infections.

Standardized mortality rates among female street-based sex workers are higher than any other population of women in North America, with homicide being the most common cause of death.

Sadly, there are multiple examples of convictions of serial murderers of sex workers over the last decade in North America and the United Kingdom, and ongoing concerns remain of potential

serial murderers in Edmonton, Winnipeg and along the “Highway of Tears” in Northern British Columbia. The recent convictions for the gruesome homicides of women on the streets of Vancouver and Seattle — the largest serial murders in Canadian and American history — should be a vivid and chilling reminder.

Importantly, growing peer-reviewed research published in some of the top medical journals now suggest that enforcement of criminal sanctions targeting sex work, including communicating

in public spaces, displaces sex workers to isolated alleys and industrial settings away from health and support services.

Enforced displacement and lack of access to safer indoor work environments independently increase sex workers’ risk of physical violence and rape, and reduces their ability to safely negotiate condom use with clients, thereby protecting themselves from sexually transmitted infections and unwanted pregnancies. Qualitative evidence further describes how criminal sanctions limiting sex workers’ ability to regulate safer industry practices (e.g., create unions,

safer indoor work spaces. etc.) compound health-related risks.

Globally, evidence-based public health research is being used in calls to remove criminal sanctions targeting sex work; one such call even came from the United Nations Secretary-General Ban Ki-moon. Yet in Canada this public health policy gap has been met with

scaled up enforcement-based efforts targeting sex workers and their clients.

According to the Canadian Centre for Justice Statistics, following the enactment of the 1985 ‘communicating code’legislation designed to remove the visible presence of sex work, annual prostitution arrests increased nearly 10-fold,

from 1, 255 arrests in 1985 to 10, 457 arrests in 1987. These rates have remained constant at about 10, 000 arrests per year, with 97 per cent occurring in Vancouver, Toronto and Montréal.

Despite three separate parliamentary sub-committees on prostitution since the

mid-1980s, sex workers and human rights experts are now being forced to

challenge the criminal sanctions through the courts, as a violation of the Charter of Rights and Freedom.

Now, as we wait for the Ontario Supreme Court decision on one challenge, the federal government has taken another backward step, this time by reclassifying the Criminal Code on

“keeping a bawdy house” (a place kept for the purpose prostitution) making it a

serious crime with a maximum sentence of five years imprisonment.6 This new

Criminal Code regulation, introduced without Parliamentary debate, is in blatant

disregard of the evidence and has the concerning risk of pushing sex workers

further underground and outside the public health umbrella.

In perhaps the saddest reflection of this public health policy gap, in 2008 sex workers in Edmonton began giving samples of their DNA to a community agency and RCMP network to ensure their bodies would be identified in case of future harm.

While rigorous evaluation of legal policy approaches to sex work remains critical, it is also time for government and policy makers to take into account the evidence of the failures of the criminalized approach to sex work on health and human rights in Canadian society.

Kate Shannon PhD

Assistant professor

Department of Medicine

University of British Columbia

Vancouver, BC

REFERENCES

1. Shannon K, Strathdee SA, Shoveller J, et al. Structural and environmental barriers to condom use negotiation with clients among female sex workers: Implications for HIV prevention strategies and policy. Am J Public Health 2009;99:659-65.

2. Shannon K, Kerr T, Strathdee SA, et al. Prevalence and structural correlates of gender-based violence in a prospective cohort of female sex workers. BMJ 2009;339: b2939.

3. Rekart ML. Sex-work harm reduction. Lancet 2005;366: 2123-34.

4. Goodyear M, Cusick L. Protection of sex workers. BMJ 2007;334:52-3.

5. Duchesne D. Street prostitution in Canada. Ottawa (ON): Statistics Canada; 2002. Cat. no. 85-002-XPE

6. Perreaux L. Tory legislation takes aim at brothels and bookies. The Globe and Mail [Toronto] 2010 Aug. 5. Sect A:6 DOI:10.1503/cmaj.100410

© 2010 Jupiterimages Corp.

Previously published at www.cmaj.ca

CMAJ • SEPTEMBER 7, 2010 • 182(12)

© 2010 Canadian Medical Association or its licensors