Please Don’t Empower Me Anymore

Editorial Note: This is the second part of a Motivational Interviewing series crafted by Johanna Ryan and Ken Spriggs.

Do you know the locations of all the best bathrooms?
Do you often take a seat near the exit, just in case?
Do you excuse yourself often to use the bathroom?
Do you ever skip meals, or avoid certain foods, to avoid multiple bathroom trips?

Those are questions from the Crohn’s Workaround Quiz, developed by AbbVie to promote its blockbuster biologic drug, Humira, for Crohn’s Disease. I took the quiz online, and passed with flying colors.

That’s odd, because I don’t have Crohn’s Disease, thank goodness. I’ve got a much less serious condition called Irritable Bowel Syndrome. It can give you many of the same symptoms as a mild case of Crohn’s disease (mainly abdominal cramps and diarrhea), but without the structural damage to your intestines seen in Crohn’s and its cousin, Ulcerative Colitis.

So I was surprised to find myself aceing the Quiz—and warming up to this website that “understood” how frustrating my little gut troubles could be. Maybe I should… Ask My Doctor? She knows about my symptoms, of course, but maybe she just isn’t taking them seriously enough. Maybe I’m not either. Maybe I should at least sign up for more information. What’s the harm in that?

In touch with me

Welcome to the dark side of Pharma marketing – and its favorite new persuasive technique, Motivational Interviewing.

The Workaround Quiz was put together by a team at Intouch Solutions, a Chicago ad agency. They didn’t know squat about Crohn’s disease, but clearly they knew plenty about Motivational Interviewing – and their Quiz won them an AdStars Award from Pharmaceutical Executive magazine. Here’s how they did it:

The first step was to convene a focus group of people with Crohn’s and listen closely to them. That’s how the ad agency learned about all those coping tactics, from knowing where to find a reliable bathroom, to knowing when to pass up the pizza. They then realized they had a problem: “The patients initially believe these behaviors mean they are managing their Crohn’s disease well.” In other words, they’re satisfied with their current setup – maybe even proud of their ability to cope. This was bad news for AbbVie.

To sell Humira, the ad team would have to “help them realize” how big an impact these tactics were having on their daily lives – and that really effective treatment ought to make them unnecessary. “We work on pushing them to desire a change in treatment, because now they’re expecting a little bit more, and then we follow that with explaining how Humira could be the solution,” Marty Caniff of Intouch explained. “And then we drive them to the doctor.” In classic M/I fashion, she was leading them in the direction AbbVie wanted them to go, while letting them feel it was their own idea.

In the best of all possible Humiraverses

What’s the problem? Humira, like other new biologic drugs, has a lot of hazards. It’s a TNF inhibitor – a powerful immune suppressant that can leave you vulnerable to a host of illnesses you would otherwise be able to fight off, from tuberculosis and pneumonia to serious fungal infections. “TNF” stands for Tumor Necrosis Factor, which also helps your body combat the growth of cancerous cells. In rare cases, inhibiting TNF can lead to cancer, as it did for this woman who took it for psoriasis.

That’s why the official FDA label for Humira warns doctors that it is only for “adult patients with moderately to severely active Crohn’s disease who have had an inadequate response to conventional therapy.” These patients have often been hospitalized for internal bleeding, had surgery to remove parts of their intestines, and tried multiple drugs without much success.

The problems described in the Workaround Quiz don’t resemble those experiences any more than a bad cold resembles pneumonia. They’re typical of mild or episodic Crohn’s, for which there are plenty of safer options. For patients like these, the FDA says, Humira is clearly not worth the risks. It also may not be worth the $1,500 – $2,500 per month cost of treatment, which has patients emptying their savings accounts and battling their insurance companies.

For AbbVie, on the other hand, every new Humira user is a new revenue stream worth thousands of dollars a year. Worldwide sales of Humira topped $10 billion in 2013, keeping it in place as the best-selling drug in the world. They recognize the key to its growth is “an ever-expanding list of indications” that go far beyond its origins as a drug for severe rheumatoid arthritis. Part of that is investing close to $200 million per year in consumer advertising.

Ask your doctor

That’s where “driving them to the doctor” comes in. The brochures I got from AbbVie urged me to take my Crohn’s disease seriously, even if I only had symptoms “every once in awhile,” and to ask my doctor about Humira. They also featured a Doctor Discussion Guide to help me prepare for my next appointment. If that doesn’t do the trick, AbbVie will even provide me with my own personal Patient Advocate who can teach me how to “communicate effectively with my doctor.” My newfound discontent with the status quo won’t go very far unless I can convince my doctor of my need for “change.”

In effect, now that they’ve used Motivational Interviewing on me, they’re teaching me how to use it on my doctor. Among the details I should be ready to share, they say, are the frequency and severity of my abdominal cramps and my exact number of “soft or loose stools” per day. I’m not likely to know that those are the lead questions on the two most common rating scales (CDAI and HBI) used by doctors to classify Crohn’s as mild, moderate or severe. But my doctor may – and AbbVie certainly does. They’ll make sure that I’m talking her language, without even realizing it – telling her what she needs to hear in order to feel comfortable moving me from “mild” to “moderate,” and writing me that Humira script.

In other words, they’ve talked both of us into doing exactly what the FDA wanted to prevent: using a very expensive and risky treatment when there were plenty of safer options. It would be illegal for an AbbVie sales rep to give my doctor that advice. But if it comes to her as her own idea (or better yet, from “really listening” to her patient), all’s well. Doctors are permitted to prescribe drugs off-label for any purpose they think is sound. They can even prescribe Humira for a stubborn case of Irritable Bowel Syndrome – and I’m willing to bet it has happened.

Before rushing to judgment on this Crohn’s Workaround campaign, though, I wanted to hear from someone who actually knows what moderate-to-severe Crohn’s Disease is like. So I asked Ken Spriggs for his thoughts.

Ken is a patient activist who blogs at diyehr.com. He’s had Crohn’s Disease since his teens. In recent years he’s gotten it under control without medication. He eats an anti-inflammatory diet and lives a low stress lifestyle. He sent me this satirical take on the Crohn’s Workaround quiz:

The great Humira workaround quiz

• Are you looking to experience your first Anaphylactic Reaction?
• Do you look forward to autoimmune hepatitis?
• Would you like to re-experience an old infection?
• Do you think having mysterious Lupus-like symptoms sounds interesting?
• Are you looking to acquire pneumonia?
• Do you know what “Neutropenia” means?
• Would you like night sweats to keep you up at night?

If you answered NO to any of these questions then THINK TWICE before you “discuss Crohn’s treatment goals with your doctor and ask about HUMIRA.”

Ken mentioned that he’d taken the Crohn’s Workaround Quiz twice – once answering honestly, and once answering No to every question. He got the same answer: It may be time to rethink your expectations. Print out this Quiz and share it with your doctor.

“Having been diagnosed with moderate/severe Crohn’s, I’m the exact person they’re marketing to, and I’m insulted,” Ken added. “The most repulsive thing about AbbVie’s Crohn’s quiz is how it villainizes the common management techniques that patients use. It’s an exceptionally predatory marking practice. The side effects of Humira can be deadly, but knowing where the closest bathrooms are is just common sense. I’d much rather cope with minor inconveniences than subject myself to the unnecessary risks of drug side effects.”

Teenagers and brands

AbbVie’s pitch definitely backfired with Ken Spriggs, and I can see why. Then again, Ken is a grown man who’s been dealing with Crohn’s for almost twenty years. Many Crohn’s patients are first diagnosed as teenagers. It’s a time of life when keeping up with your peers means a lot. For a college kid, it’s easy to imagine the lure of being able to drink beer, eat buffalo wings and take your good health for granted just like your buddies do – without all those lame Workarounds.

That’s an unsettling thought. The extensive Black Box Warning on Humira’s label includes this:

Lymphoma and other malignancies, some fatal, have been reported in children and adolescent patients treated with TNF blockers including HUMIRA. Post-marketing cases of hepatosplenic T-cell lymphoma, a rare type of T-cell lymphoma, have been reported in patients treated with TNF blockers including HUMIRA. These cases have had a very aggressive disease course and have been fatal. The majority of reported TNF blocker cases have occurred in patients with Crohn’s disease or ulcerative colitis, and the majority were in adolescent and young adult males.

For a few severely ill young men, those risks may be worth taking. But for those who “believe they are managing their disease well,” like the patients who inspired the Workaround Quiz, AbbVie’s suggestion that they need to “rethink their expectations” and consider upping their game could be disastrous.

Come in the puppet will see you now

It’s the very opposite of the health-promotion philosophy that gave birth to Motivational Interviewing. That could be seen as a bit manipulative, perhaps – but if it manipulated people into taking better care of themselves, how bad could it be? Many people are happy to hire a professional manipulator, whether a therapist, a Weight Watchers program or a fitness coach, to help them stay on track with an important personal goal.

In this case, however, AbbVie has set the goal: to get you on Humira, just as Ford’s goal is to get you in a shiny new truck. Maybe a new truck is just what you need. Or maybe you have no earthly use for one, and buying it will break your budget and trigger a big fight with your spouse. It’s all the same to Ford. Most of us realize this, and can keep our heads when an ad campaign suggests that driving a big red truck is the only patriotic, or smart, or macho thing to do.

In the same way, getting on Humira could be a wonderful idea for some, a tremendous waste of money for others – and a personal disaster for more than a few of us. But when we enter the world of healthcare, we tend to trust that the conversation will take place on a higher ethical plane than we’d find in an auto dealer’s showroom. It ain’t necessarily so.