The time has come for a movement using a partnership model that combines the diverse but complementary perspectives and ideas of healthcare professionals, patient representatives, and consumer advocates. It’s no longer enough just to work in our individual silos. A partnership model based on mutual respect and collaboration can enable questions and concerns to be raised in different voices for different audiences.  New strategies emerge when we come together collectively.

Selling Sickness 2013 was designed using the partnership model starting with the co-organizers.  Leonore and I (KW) came from widely different backgrounds, careers, and perspectives.  At first out of necessity (no one else was available) but soon out of choice (the complementarity was phenomenally creative) we learned to listen to each other while being willing “try on” the other person’s ideas without judgement. Together we hashed things out, compromised, took turns leading and following and our planning kept getting better.

Next we built support for the conference by recruiting a balanced range of co-sponsors that represented healthcare professionals, consumer organizations, healthcare journalists, and reformers.  Each of these constituencies has a stake in the selling of sickness conversation and we wanted an equal distribution. Even our call-to-action statement was developed collectively by a diverse group from around the world representing the various stakeholders.

The partnership model seems to be gaining momentum.  A perfect example is “Choosing Wisely,” designed by the American Board of Internal Medicine together with Consumer Reports.  Last week, I attended a social media workshop in Washington that Consumer Reports’ Choosing Wisely team put together.  The groups at the workshop included ABIM, AARP, National Partnership for Women and Families, academics, consumers, as well as two health benefits business groups.  Though everyone represented their individual organizations, we came together collectively to discuss social media strategies to help tell the Choosing Wisely story to a bigger audience. There were moments of synergy that I have come to recognize as true partnership. More are needed.

Much lip service is currently given to the idea of “partnering” between industry and government, academia and industry, and consumers and industry. But these partnerships often lack true collaboration and mutual respect because one agenda dominates. We want to model collaboration where no one agenda dominates – rather, an agenda emerges from the partnership itself. Maybe it’s a paradigm shift in healthcare reform. At the very least it’s a breath of honest fresh air.

The focus of the Call is twofold: first, to identify, in dramatic language, all the many aspects of disease-mongering that have alarmed us. And second, to offer a list of specific reforms that can make a difference in the state of medical science and health care.

While most responses to the Call have been positive, it’s been interesting to note some hesitancy to sign due to the energetic language used in the Call. One group wrote us, “There was unanimous support for the bulleted list of objectives.  But there was hesitancy about the provocative tone of the preamble.  In aggregate, words like “corrupt,” “untrustworthy,” “deceptive,” “demand”, “corrode,” “hoodwink,” “biased,” “alarmed” etc. create a tone of angry defiance that went farther than [our] group was comfortable endorsing.” It is understandable that some groups would find the preamble (the first part, the one that identifies the panorama of disease-mongering) a bit strong! But, ironically, it is that very strength, that energy born of outrage and betrayal, that has fueled Selling Sickness this far.

A movement is an umbrella for individuals and groups to walk together despite their differences. The Call to Action on Selling Sickness is one element in a new social movement to reform medical science and health care and we welcome fellow travelers, whatever their chosen phraseology might be.

This is frightening news for patients. If our doctors are being kept in the dark about harmful side effects, who can we trust? Clearly, this study is revealing and we need a better system for educating our doctors. They shouldn’t be educated by the pharmaceutical sales reps who have financial gain in promoting the benefits of their products. Maybe it’s time for academic detailing? I (KW) have personally been involved in testifying on the state level in Minnesota and Wisconsin promoting academic detailing legislation.

Just yesterday I saw a TV commercial promoting Cymbalta for lower back pain.  Its advertising message was “Imagine a day with less pain.” The only thing I could imagine was the # of people flocking to their doctors offices asking about this drug. I wonder, however, how many will be told that Cymbalta is actually an antidepressant that carries a serious black box warning for suicidality and other psychiatric side effects. According to this study, it’s very unlikely that the sales reps offered up this information to the doctors.

Who pays the price for this lack of disclosure? We do. If the doctors are unaware of the potential harms from the drugs they prescribe, patients inevitably suffer the consequences.

It’s time for a new system. Patients and doctors deserve better.

• A new website called “Your Voice, Your Wish”
  
• A 5 minute no-narration video that shows many ISSWSH members saying women and sex are a great pair (on the site and also on YouTube)
• an online petition to support the campaign that promises signatures “will be shared, on behalf of the ISSWSH as we continue to work for the further development of the field of female sexuality and advocate for solutions to address this important, and often disregarded, issue for women”

Coming off the heels of organizing our Selling Sickness 2013 conference, it was a relief to be able to participate and network and not have to worry about the A/V working or running out of coffee.  At this meeting, I met several new people from PCORI and AHRQ. I had a productive conversation with a woman responsible for the AHRQ’s program of free pamphlets including an introduction to comparative effectiveness research and best ways to treat specific diseases. I called to her attention that the depression pamphlet didn’t include anything about serious drug side effects or black box requirements.  She said she would take this information back to her editors.  These sorts of conversations can happen when people from various perspectives come together.

With several conferences coming up such as Pharmed Out, Preventing Overdiagnosis, and NPA’s national meeting, I began thinking about how they all fit together like pieces of a puzzle.  It’s clear that the issues raised at the various conferences are serious and widespread.  Taking a collaborative approach and moving the conversation outside the typical audiences will be essential for meaningful change.  There are many interesting perspectives coming from consumers, patients, researchers, as well as the worlds of bioethics, government, and the law, and even aspects of the drug, device, insurance and advertising industries. It will take more than just the like-minded preaching to each other to fix the current paradigm.

The keynote at AWP had been given by Ouyporn Khuankaew, a Thai Buddhist feminist activist. Its focus was “how feminist activists can collaboratively work together in crossing borders (of culture, location, language, race, class, sexuality, religion, etc.) through the partnership model.” I was enormously moved to realize that Kim and I had enacted this model as if we had been working from a blueprint.

• lengthy deep listening, not just talking
• sharing and working together, not just helping and giving
• being a witness to suffering, not just trying to fix
• asking questions not offering solutions
• connecting with others, not working in splendid isolation
• approaching each topic with an open mnd (a beggar’s bowl), accepting any possibility for learning

It’s a bit of a shock to think that we had engaged for 18 months in a spiritual practice, but I know that what we accomplished was important and any lens that gives us new understanding is worthwhile.
Trying to turn the tanker of disease-mongering, as we often said to each other, will require a fresh approach and a fresh toolkit, and in talking about it this morning in Salt Lake City, I began to think that what we could now call our “partnership model” might just be the right ticket!

• Attended by around 225 advocates, academics, journalists, health care providers, legislators, students, lawyers, librarians, writers
• From Russia, Finland, Germany, Scotland, France, UK, New Zealand, Australia, and half the provinces in Canada, not to mention coast to coast US
• Participants and speakers paid their own travel, registration and expenses so we could keep the registration fee low and still pay for costly hotel AV and lunches, coffee breaks with brownies, fresh fruit and nuts, and a boxed lunch that came in a bag
• The presentations were of high quality and diversely arranged so everyone could connect the dots in the slippery landscape of selling sickness and disease mongering
• Email comments to me include “historical and of immeasurable benefit,” “transformative experience – I found new language for vague ideas,” “recharged is putting it mildly” and lots more – thanks so much for getting in touch

What’s on our to-do list?

• We will upload as many of the talks as we can in the next few weeks
• We are working to put the CALL TO ACTION on an interactive website for additional signers (many attendees signed using a beautiful cobalt blue pen!)
• We are drafting an editorial that the BMJ will consider about the conference and the issues that will link to the CALL; PLoS will further distribute the CALL
• We are compiling the list of all attendees for further collaboration

As more than one person said to us at the end, “the struggle goes on.”

You can google “lymphomaniac” and see how widespread, from dance parties to T-shirts, are the uses of humor to take control back from a state of illness. Patients and activists everywhere arm themselves with ridicule and farce, satire and slapstick — humor is a core tactic of activists. You may be outnumbered, outspent, and outlobbied, and have a grim prognosis medically or politically, but you’ll live to fight another day if you’ve got a wicked sense of humor. Think Yes Men, think SNL spoofs, think Colbert. God bless Stephen Colbert.

“Humor as protest works when it’s fueled by truth, anger and wit,” said someone, and the Selling Sickness movement for medical and scientific reform has no shortage of truth, anger and wit in its ranks.

Our Thursday night conference session is a program curator Amber Hui calls “Selling Sickness Popcorn Showcase.” We plan 90 minutes of illumination and entertainment via diverse YouTube animations, excerpts from plays and feature film trailers, spoof drug ads and infomercials, documentaries, and singalongs. Humor builds solidarity as it releases frustration, and walking just up to the line of being offensive  is exciting. Let’s celebrate the fact that there is more than one way to skin a cat and that the arts have an important part in our struggle.

Oh, by the way, the Hyatt charges $6 per attendee for the popcorn, and that’s no joke.

Read more:

http://www.care2.com/causes/humor-and-activism-why-didn-t-the-groupon-ads-work.html

Don’t be surprised! Be prepared for typical charges leveled at critics such as:

• Critics don’t speak for all (or any) patients (or women or old people or children or…)
• Science is on our side
• Most reputable doctors are on our side
• Critics want to deny people medicines they want and need
• If tests and drugs are so dangerous we would know by now
• The FDA approval process is tested, tried and true
• A muzzled industry harms the health of the public
• Industry and researchers need to partner for better healthcare
• Industry and patients need to partner for better healthcare
• Industry and government need to partner for better healthcare

Have rebuttal arguments and fact sheets prepared, e.g.,:

• Research overwhelmingly shows the destructive interference of commercial factors on research, publishing, and “patient” groups
• Advertising is not and never has been about education, it’s about persuasion
• Statistics can be and often are manipulated to prove whatever
• Partnerships are imbalanced when one of the partners has all the money
• Drug side effects are responsible for more harms than people realize
• Medicalization is a strategy to convert ordinary problems into health risks that require lifelong monitoring and treatment
• Follow the money