Caitlin Cronenberg’s pop-up photo exhibit exposes truths about MS

The dream-like images were commissioned by a PR firm that represents Novartis Canada, makers of a controversial MS drug

by Anne Kingston

CNW Group/Novartis Pharmaceuticals Canada Inc.

Caitlin Cronenberg is a young photographer who has made a name for herself chronicling fashion and celebrity—as well as the cinematic process of her filmmaker father, David Cronenberg. So a press release issued last week headlined “Caitlin Cronenberg Exposes the Reality of Young Women Living with MS” appeared to signal a bold—even brave–departure for her. Multiple sclerosis, or MS, is a chronic degenerative condition that can lead to paralysis, depression, and blindness. It’s a mysterious condition; progression varies radically; its cause is unknown. Nobody even knows how many Canadians have it: the much-repeated statistic of 50,000 to 75,000 people is out of date, an MS Society of Canada spokesperson told me months ago.

It doesn’t lend to easy imagery. So I wondered: Is Cronenberg now delving into the dark, uncomfortable territory annexed so well by her dad?

But the “reality” that Cronenberg’s one-night exhibit, DREAM/AWAKE, exposes is less about MS than about how a pharmaceutical giant can create buzz amid advertising restrictions—in this case, by linking a fashionable female photographer to a prescription drug targeted at young women. That’s whom multiple sclerosis strikes most—three times more frequently than men.

Cronenberg was hired for the gig a few months ago by Weber Shandwick, the PR firm that represents Novartis Canada, a sub of the US $46-billion Swiss pharmaceutical giant Novartis AG. “They told me they came up with the idea for the installation with me in mind,” Cronenberg told me in a telephone interview. She was flattered.  She also has family friends afflicted with MS, she says. A former neighbour she’s fond of is now wheelchair-bound.

Cronenberg was given “total artistic freedom” on the project, she says, although the client provided three women to be photographed, all of whom were diagnosed with MS in their 20s or 30s, when the condition often strikes. Rebecca Webster of Weber Shandwick explains the women were chosen after they were “nominated by their treating neurologists who felt strongly that this project was important to raise awareness about MS, especially among women.”

The three had had success taking Novartis’s Gilenya, a $31,000-a-year oral MS pill approved by Health Canada in March 2011 (until then, MS drugs had to be injected). Gilenya isn’t explicitly mentioned in the press release. But as it happens, one of the women, Himani Ediriweera participated in Gilenya’s clinical trials and was quoted enthusing about the drug in a 2011 press release.

CNW Group/Novartis Pharmaceuticals Canada Inc.

Cronenberg says she based 12 photographs on the women’s stories. The resulting staged tableaux exude a dreamy, unworldly vibe that make no reference to illness—one woman appears to be in a childhood bedroom; another stands next to a red BMW and a toy sailboat; a third is in a shadowy room festooned with pages of paper. The press release describes the photographs in dramatic, yet upbeat terms: “The images demonstrate the feelings of loss—of body, family, opportunity or work–and how each woman has reclaimed her life through treatment and become a figure of inspiration for young women fighting the disease.”

The exhibit of Cronenberg’s photographs was a one-night pop-up event on May 30, “World MS Day,” staged at a Toronto gallery that rents out to corporations wanting to imbue an event with arty patina (Loblaw Companies launched a new packaged food line there last year). Webster describes the affair as “invitation-only for media and influential people.”  Cronenberg donated the work to a silent auction with proceeds going to the MS Society of Canada. “Several thousands of dollars were raised,” says Webster, declining to be more specific.

The show was marketed as bringing “awareness” to MS—and received media attention as a result, including Cronenberg being interviewed on the CBC. The line between “awareness” and “promotion,” however, is fragile, given Health Canada’s strict regulations governing direct-to-consumer advertising of prescription drugs. Regulations allow drug companies to use a brand name but not talk about what a drug does. Direct to consumer information—those public awareness ads on TV discussing a specific condition—has to be balanced and can’t use brand names.

But social networking has created new grey areas. Cronenberg’s photographs themselves contain no branding, no mention of Gilenya or Novartis—though the exhibit and press release mentioned the company and there are now plentiful linkages between Cronenberg, the MS Society of Canada, Novartis and Gilenya exist online. (Health Canada is investigating the exhibit to see “if it was promotional in nature,” a spokeswoman told me.) Where the hopeful claim that “each woman has reclaimed her life though treatment” in art show PR fits into the rigid regulatory equation is new territory.

What also doesn’t have to be mentioned in the press release for the exhibit—because the photographs are technically part of an art exhibit and not a commercial—is “side effects.” And in Gilenya’s case, 84 people died during its worldwide clinical trials, though some of those deaths were not directly linked to the drug. Instances of adverse effects are so high that neurologists must monitor people closely for six hours after the first dose. In February, 2012, Health Canada put Gilenya under review, though the drug still can be prescribed. Concerns were raised after 11 new deaths (a number that has since risen to 15) were linked to it (none were in Canada but there were more than 50 averse-effect reports).

One woman with MS expresses conflicted feelings about the exhibit. “Positive images are a great thing,” says Chrystal Gomes, 46, who was diagnosed with MS when she was 28 and has never taken MS drugs. She “loved” Cronenberg’s pictures but dislikes the drug sponsorship—and the message: It makes me mad,” Gomes says.  It gives the impression that MS patients need drug treatment to reclaim their lives, which is so wrong.”

Cronenberg knows the exhibit isn’t photo-journalism:  “I would never say this is a general statement about MS,” she says. “To look at it, you wouldn’t even think this is about MS. I wanted it to be uplifting.” She knows the subjects influenced content: “I was so lucky because women I was working with had happy endings to their stories; if someone had appeared in a wheelchair, I would have made her story different to make sure it was properly presented.”

Of course, a company selling a MS drug won’t want to be associated with imagery referencing the harrowing truths of the condition. (For a more candid portrayal, see these self-portraits by Patricia Lay-Dorsey.)

The exhibit shows how social networking is reframing the way we see illness and disease—and how drugs may be stealthily marketed. It’s also another reminder of how women remain the primary target of Big Pharma marketing, as discussed in the important book Push to Prescribe. While MS is too complicated a condition to summon the pretty, sanitized “pinkwashing” that now surrounds breast-cancer, the move to frame it as a “women’s” disease portends similar campaigns.

The drug company-doctor network the exhibit reveals is also concerning. That neurologists are providing patients for a Pharma-sponsored “awareness” campaign that doesn’t add one whit of “awareness” should raise red flags—and a passel of questions.

CNW Group/Novartis Pharmaceuticals Canada Inc.

 




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Caitlin Cronenberg’s pop-up photo exhibit exposes truths about MS

  1. Had the author done some research, 2 of those deaths during trials were in connection to the drug itself. The others were from car accidents, suicides, etc. Many of them had never even taken a single dose of the drug. Also, in regards to the following, “Instances of adverse effects are so high that neurologists must monitor people closely for six hours after the first dose.”: actually, it’s the severity of the potential adverse reaction, not the high frequency that causes the need for observation. The adverse advent is brachycardia, which could be potentially serious. It, however, doesn’t happen all that frequently.
    Something else I’d like to draw attention to is the use of the phrase “wheelchair bound”. It’s highly offensive to most who use a wheelchair. Make no mistake, I’m not a fan of this drug or the company’s tactics ( I receive at least 10 promotional postcards or letters from them a week) and I do question the practices displayed in this event, but it’s hard to take an article seriously when you can’t get past inaccuracies and offensive terms.

    • Always interested in feedback, but don’t want to spiral into semantics. Please elucidate how best to describe someone who has to use a wheelchair in one hyphenated compound adjective.

      • My daughter likes the term wheelchair user, because it is an active way of describing people in wheelchairs.

  2. RIGHT ON Chrystal Gomes! This article is very disturbing on how a drug company blatantly glorifies MS. Thank God Anne Kingston did point out the TRUE FACTS on this controversial drug. Too bad most will gloss by the links to avoid the reality. I just wish we did have all the truths when these drugs are released … but we are finding out via the Internet how facts are skewed and blindly accepted by Joe Public as gospel.

  3. It’s not the young women who need their awareness raised, it is society as a whole. Young women will find out soon enough if they have MS, forward warning will not help them avoid it. What is needed is a general understanding of what this disease does to people and some really wideranging research into the cause or causes. I have recently had a conversation with a Canadian doctor who has MS himself who told me that because MS struck women more often than men there was no feeling of urgency or relevance in the male dominated science community to do the research necessary to obtain some answers. Until eyes are openend to theories other than the auto-immune one beloved of the pharmaceutical industry answers are unlikely to come quickly.

    • If we follow your logic, we should know by now the cause and the cure for prostate cancer and there would be no more deaths associated with Duchenne’s muscular dystrophy. Unfortunately, those diseases are still responsible of numerous deaths among men. The Canadian doctor you are referring to is certainly Dr Bill Code who you interviewed 3 weeks ago. Stating that MS is not considered in research because of sex discrimination is completely silly and unacceptable. I challenge Dr Code to say that publically. We will see afterwards what will happen with his credibility…

      • I don’t think that my logic has much to do with MS research being stuck in a one way street and no one is doing research in any other possibility. Why is that? My logic has nothing to do with cancer research at all. Cancer is a collection of different conditions which are difficult to compare in terms of gendre. If you want to make a comparison maybe we should look at the number of deaths from some of these diseases, if they can be compared at all… MD deaths 0.365 per 100,000 (mostly men) versus MS deaths 1.09 per 100,000 (2/3 women) a year. And in cancer prostrate versus breast the figures are roughly the same men 21 and women 24 per 100,000. I can’t tell how much funding goes into these different diseases, without doing a dissertation, but cancer has a much higher profile in terms of research than neurological diseases and whatever the reasons something must change, not only about the money put into it but also about the direction which it takes.

  4. I guess “real” pictures of how MS affects people aren’t “pretty” enough for an art show. Maybe a photojournalist could show the “truth”–swollen/purple feet, distorted/rigid limbs, soiled underwear, crossed eyes from double-vision, a person struggling to get off the floor after falling–these are only a few of the REAL images of MS. It’s no wonder the majority of the public have no idea how horrendous MS can be when they’re given the impression it just involves standing (without falling in the water, no less) and watching a toy boat floating. But I guess nobody wants to see the agony!

    • Hi Lori, I have thought the same thing as you, not only about these pictures but also about the recent advertising campaign of beautiful people with wires rounds their heads like champagne corks… Art does not have to be pretty… There are ways of showing the pain and disability in photographs, without the glamour and although not a professional I am willing to take some arty photographs of people with MS (without revealing their identity) to show what happens to people suffering from this dreadful condition… Any volunteers? Anywhere in the South of England.

    • Well said Lori. My 24 years of MS is anything but glorious. People do not see the reality because I can’t show them. Being house bound, no drivers license or the motivation to show how I realy am. Discrimination is what I have experienced when I do get a chance to be in the public eye (once a month if I am lucky). Ask my husband who witnesses every day how it really is. The only thing he does not see is a clearly is my constant pain. I can provide my pictures of the reality … but no doubt it will be ignored as this condition is by most.

  5. Novartis has co-opted Caitlen Cronenberg for their own agenda. Total artistic freedom is not artistic freedom when it comes with conditions.
    KD, I fail to see how the reference, “wheel-chair bound”, is offensive to those in them or anyone else.
    The author, Anne Kingston has done research and kept abreast of issues more than most journalists when writing about people with MS, the MS Society, and drug companies. She has given a fair account of this situation.

  6. Obviously, the quote in this article isn’t
    all that I said when Anne Kingston told me about what I feel is a bogus “MS
    awareness” stunt. Thankfully, Anne
    didn’t include my rantings, and instead stated her more important facts that
    show certain groups cozily hooked up once again, with MSers just a pawn in
    their.self-serving game.

    Yes, I do love positive images, and hang
    onto them as a lifeline because they serve me well. Eighteen years ago, I suffered my first major
    attack and was hospitalized for a month-and-a-half, during which time I was
    diagnosed with MS. At that time, I knew
    nothing about MS or even what the initials stood for. A very dark picture was immediately given of
    what my life with MS was going to be like from that second onwards, and how I
    should basically prepare for the worst.
    Modifications to my home were recommended, and I was given a list of suppliers
    selling assistive devices, etc. I was
    told I could no longer pursue a career in hotel and convention management
    because of the stress, long hours and shift work. I was told I must avoid stress, fatigue,
    heat, etc., etc., because they could cause a relapse. And just to drum it in further, my seated
    neurologist held his hand way above his head and said, “Before MS, you could
    reach this high.” Then he lowered his
    hand to just above his ankle and said, “Now, you can only reach this
    high.”

    I lost the following
    four relatively good years to depression, despair and fear because of that very
    dark picture – the only picture presented to me at a time when I was most
    vulnerable. And I did experience more
    health problems in those four years.
    Thankfully, a series of personal-enrichment courses steered me in the
    right direction, making me realize that perspective does make a huge difference
    to our being (definitely to my own being).
    Yes, MS still cruelly had its way with me and my health, but my
    new-found positive and hopeful perspective helped me to cope better (emotionally)
    than before, and I was able to fight back harder.

    While I love
    positive images of hope because I believe strongly in the mind-body connection
    and know first-hand that our thoughts can have an impact on our physical
    health, well-being and quality of life, it is true – a series of photos portraying
    MSers in ALL stages of this disease would have reflected a real and honest
    campaign for raising awareness of this horrid disease, because Msers in ALL
    stages of this disease are fighting a mighty and daily battle to reclaim their
    lives from MS. But this wasn’t the
    pharmaceutical company’s aim, obviously.

    Real awareness would surely include representation of the varied stages
    of an illness, not just carefully selected ones intended to trumpet a
    sponsoring company’s treatment, whether overtly or covertly. If the point of this exhibit was to showcase
    MS and raise awareness of young women living with MS who have reclaimed their
    lives through treatment, then MSers in different stages of this disease should
    have been featured, with press releases highlighting the various means through
    which they have reclaimed their lives.

    A deliberately shameful tactic, for the neurologists to select MS
    patients who were on the very drug treatment created by the pharmaceutical
    company sponsoring this exhibit. How
    misleading that the neurologists didn’t pick any MSers who reclaimed their
    lives following the non-drug treatment of venoplasty for CCSVI….or MSers who
    reclaimed their lives after dumping their dire-prognosis-thumping
    neurologists who told them repeatedly that an MS diagnosis meant they
    couldn’t live a normal life unless, of course, they began a drug treatment
    that “may” help…or MSers who reclaimed their lives through other non-drug
    means, etc…

    I was relieved to read that someone from Health Canada is
    investigating whether this exhibit is “promotional in
    nature”…which it most certainly is, and I hope that HC will see this
    and do something to prevent further shameless promotions such as this.

    No disrespect meant for the featured patients, I am happy they are
    doing well, and I thank them for putting themselves “out there” for
    MS awareness. BTW, I would be delighted that they are doing well because of a
    drug treatment or a non-drug treatment etc., etc….whatever works for them. For me, hope and the impetus to reclaim my
    life never came in the form of an MS drug treatment, but I recognize that
    some say that it did for them, and I am happy for them.

    But this “MS Awareness” campaign has to be seen for what it really is
    – a disturbing ruse. Many thanks to
    Anne Kingston for exposing the truths about who some of our specialists are
    really interested in serving, and their heavily pharma-influenced
    “care” over our illness. Thankfully,
    the Macleans’ article raises awareness into the duplicity and collusion that
    these groups are engaged in.

    The gross reality, which a photo could not capture, is: MS is a devil
    on its own that fights us daily for more control of our being, but we have
    just as huge a battle trying to reclaim our lives from the various groups who
    think they own all things MS – including us, the patients with this
    label.

  7. As usual, Kingston’s work is inflammatory and full of conspiracy theory overtones. It’s no wonder I dropped Macleans as a credible source of interesting news quite some time ago. This magazine has become a tabloid.

    • Journalism tries to illuminate, to make us ask, “what is our reality?”. This article did just that. What is not interesting about this article? Art, people afflicted with MS, sponsorship of an art show by a drug company, and their associated relationships was interesting to you as you were compelled to comment on it. Your reality suggests the association is a conspiracy theory. You say the article is inflammatory as if that is a bad thing. If you think there is a conspiracy theory involved, you might want to further investigate for yourself. Journalism wrestles with issues of the day, elucidates social conditions, and facilitates us in finding solutions to challenges and ideas.

      • Actually, your assumption of my interest (or lack) in this is incorrect. Kingston’s style interests me in her consistent use of subtext without pointing directly to facts and sources (some might say brilliant writing device). This is deliberate: making accusations (tabloid style) while conveniently using subtext to avoid being called out to point directly to the facts (often because there are very few to point to). Just track her entire Macleans history and you can draw your own opinion, just like I draw mine.

  8. luckily have never ever had any drugs ever to slow MS down and proof that drugs must all be bad have lived many years no drugs and friends who have had any have died one being a best friend leaving 3 small children

    • A recent scientific article concerning the survival rate after 21 years in the first study looking at Betaseron in MS prove the contrary. MSers who were randomly assigned in the Betaseron group have a significant reduction of mortality compared to the group who were on placebo. In fact, being treated with Betaseron reduce the risk of mortality by 46% compare to those who were in the placebo group. http://www.ncbi.nlm.nih.gov/pubmed/22496198

        • This paper is based on simple facts: the difference in mortality numbers after 21 years depending if you have been treated or not early with interferons. They have been able to identify 98% of the initial persons who were part of the study. Nobody can play with these simple numbers!

          • The injections are toxins that have never proven to slow or stop progression. MS has never been proven to be an autoimmune disease, because it’s only ever been a theory. How can they make drugs for a theory? They do and make billions of dollars from it. At best it may help by 30% with symptoms which is the same as a placebo effect.
            Betaferon Side Effects: are similar to those of other interferon-based therapies with the exception of Avonex, which doesn’t cause as many injection-site reactions.
            •Flu-like Symptoms: The most important side effect is the flu-like symptoms, which are experienced by about 76% of patients. These include fever, chills, sweating, muscle aches and fatigue, which last for 24 to 36 hours. This side effect is usually the worst after the first injection and progressively lessens with each injection, so that most people do experience it or it is tolerable after six months. It can also be reduced by starting with a low dose and increasing to a full dose gradually, over several weeks. Taking ibuprofen or acetaminophen a couple hours before and after can help with some of these side effects.
            •Red spots: These usually occur at the site of injections (in 85% of patients), which may last several weeks. These can break down into sores (injection-site necrosis) in 4% of cases.
            •Liver Damage: Hepatic injury including elevated serum hepatic enzyme levels and hepatitis has been reported. Regular monitoring is required to prevent such damage from occurring or progressing.
            •Blood Counts: Betaseron can cause a decrease in the numbers of red and white blood cells, as well as a reduction in the number of platelets in the blood.
            •Depression: Betaseron should be used with caution in patients with depression.

            Yes, perhaps less deaths but at what cost? Poor quality of life.
            Drugs = multi-billion dollar pharmaceutical companies.

            Granted, there are many drugs that provide relief for many illnesses. However for relief from symptoms for MS, the interferons are useless.
            As for the study, below are some sites that indicate how the drug companies manipulate to insure their greed is sustained. Serono’s settlement to pay 44.3 million to settle a case is just a drop in the bucket for them. Drug companies are making huge profits off of MS patients. It is a disease with no known cause and no cure. Serono who makes the interferon Rebif costs $18,000.00+ a year for a patient. The new oral drugs cost even more and are responsible for many deaths (Gilenya – 84 deaths; Tysabri – 212 PML cases and 46 deaths).

            Big Pharma Marketing to Medical Students by Len Saputo, MD

            http://tv.naturalnews.com/v.asp?v=54A480C956FCCA62B5B7E1C505325CD2

            Ghostwriters
            http://www.cbsnews.com/8301-505123_162-42844622/inside-pfizers-ghostwriting-shop-friendly-drug-studies-for-just-1000/

            Pharmaceutical Giant, Serono, Agrees to Pay $44.3 Million to Settle False Claims Act Case

            http://www.justice.gov/opa/pr/2011/May/11-civ-565.html

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