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.
My former barber has crohns, I don’t see him anymore, he did not approve of my behaviour on ssri’s.
Nothing it seems, necessarily is, what it supposedly was ment to be.
Hello….
I had IRS for 20 years.. I would often have to put a towel in my mouth, so people would not hear me screaming while toileting…
I then came across NT-nourishing traditions….Weston Price…
I immediately stopped cooking with rancid oil, stopped most processed food, and moved over to the traditional diet of the centuries of our fore-fathers….I was never a junk foodie.. I also never consumed soft drink. My IBS disappeared overnight…. I now consume fresh fruit/vege every day before meals, to alkaline/prepare my gut for the coming acidic food..
I make my own kefir yoghurt, so nice and fresh and full of the good stuff… yoghurt in supermarkets has no goodies left in it, as it has been too long from making, to bottling, then consuming… I cook with butter and lamb fat, as one did for centuries….
After the 1950’s people were told that natural food was bad for one and to consume food nearly devoid of nutrition..
I have much more to say on the subject, and pharmaceuticals… They have left me in a bad state……I can get help(in USA), but the cost is totally prohibitive for a disability pensioner..I am finding more sites advocating real animal fats.. Even Doc Oz, a staunch LOW FAT devote, is now saying animal fats are ok..
Regards Ingrid from Australia
IBS is NOT the same as IBD.
You would never need humira for IBS.
Clearly YOUR issue was a bad diet not an autoimmune disease.
What you say here is as bad as the commercials for drugs!
I’m absolutely disgusted and offended that you not only try to compare your IBS to IBD, but that you then lie about using a drug for a condition you don’t have as though it’s valid evidence to dissuade people from a life saving medicine?
IBS is nothing like IBD, you ignorant sod. It is like comparing a random muscle cramp to muscle necrosis. Stop trying to make yourself out to be things you are not: informed or chronically ill.
Disgusting.
If love to hear more about humira causing cancer and if anything how much do you know about this? I have ankolosing spon and have refused humira although my sister also has Ak and took humira and now has stage 4 cancer. Please any further info on this would be great?
Untreated IBD can cause cancer as well. Any inflammation in the bowel can cause cancer.
A dear friend with Crohn’s/colitis is terminal as we speak due to having no treatment. He turned down Humira and is dying from the disease.
It’s written as a known side effect on the Drug insert
“Short- to intermediate-term treatment with biologics (e.g. up to 4 years) appears to be very safe with respect to lymphoma risk, especially with TNF-α inhibitors in which their potential risks appear to be well defined. Continued vigilance is warranted, however, in the appropriate patient, the risk-to-benefit profile of psoriasis treatment with respect to lymphoma risk appears highly favorable.”
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2768030/
I just had my 4 first injection 8 days ago…after having over 30 cm of bowel removed bag and stoma 8 months reversal 8 weeks ago…. no one told me …not one medical professional told me or warned me of the side effects….after reading different sites a d testimonies I gotta tell you….I’m scared of what it will do to me… .😔
I’ve been taking Humira for three years now with the only adverse side effect being bruising at the injection site.
This article is correct in the idea that if you only have mild symptoms it may not be worth the risk. However, it fails to address that Humira and biologics like it have been used and researched for almost 20 years, and that for those of us with severe symptoms these types of medications are the only ones that will give us some type of relief.
When I had concerns I went to my doctor with about 15 questions and she took the time to go through all of them so I had all the information and piece of mind. If your doctor isn’t willing to sit down and talk to you, I suggest finding a new doctor and not necessarily a new medication.
This article also makes Abbvie out to be a money hungry corporation. In reality, I have NEVER PAID A PENNY for my three years of biologics through their patience assistance program. They have paid for all my medications and they set you up with a nurse and pharmacists you can talk to about your worries, side effects, and assistance for taking you first injection.
Please don’t let biased articles such as this one scare you from getting your needed treatments.
I was starting to freak out after reading all the negatives about Humira. So glad I found uour comment! Just started Humira and feel horrible, but praying it works for a little while at least.
You have every right to freak out, Heather- this article is nothing compared to my actual experience on Humira. I’ve had Crohns for 23 years; for 10 of those years, I was in remission on Remicade- my life was perfectly normal and having Crohns wasnt something that I even thought about. Then, I was basically forced to start Humira bc they wouldn’t do my Remicade anymore.
In the 15 short weeks I was on Humira, my Crohn’s spread from the sigmoid only to affecting my entire large bowel, parts of small, and the esophagus. Since the 12th week of treatment through this day, I’ve been hospitalized 5 times. I now have Non-alcoholic fatty liver and have become Cachexic (wasting syndrome)- I hardly recognize the 100lb skeleton in the mirror. Additionally, while still being treated, several internal fistulas began to develop. Now, they have all connected in one way or another and have created a large phlegmon that ‘communicates’ throughout my presacral and pelvic spaces.
I’ve started Remicade again and the Crohns within my intestine has been under control, however, its too late for the extra-intestinal manifestations that occurred while on Humira. As a result, I’m having surgery in a week to do a diverting loop ostomy, and 3-4 months later, a second surgery to remove the rest of the large bowel and a full hysterectomy since the phlegmon involves the ovaries and tubes as well.
My advice? Get imaging done as often as possible if you’re still in pain. If you find yourself beginning to feel ‘paralyzed’ from the hips down at times, or heaviness in the legs when walking, tell your Dr immediately. Hopefully, it will work well for you! I just feel compelled to warn people due to the rapid progression in my disease state that I experienced and the inability to reverse it because of how quickly the damage was done. Good Luck!
I have not been diagnosed yet but 3 docs think I have chrones and my family dr wants me to try humeria and iam so leary on it cause iam on Skirizi for alot of the same symptoms socratic sparisis and inflammatory bowel .scare so .your opinion is great to hear..thanks
Thank you. I’m just starting humira for my psoriatic arthritis that isn’t responding as well to methotrexate alone. I can barely move my fingers and toes and my joints are always sore. If I don’t do something, my fingers will become permanently damaged and more unusable than they are now- as well as the rest of my joints. I get what the article is saying- that humira isn’t for those with managed symptom- but it is a bit over the top with the fear factor.
My psoriatic arthritis PsA and Psoriasis stopped responding well to Methotrexate, after 5 years of relief. I went off Methotrexate one month before recently starting Humira. In addition to PsA and Psoriasis, I have a unilateral autoimmune inner ear disease (AIED) that was responding positively to Methotrexate. I started Humira 1 month ago and am just through the initial loading phase (80mg, 40mg, 40mg) and I certainly am already getting relief from the joint pain. My Psoriasis is periodically flaring but both the Psoriasis and the PsA had stopped responding to Methotrexate, so I needed to change medicine. My dermatologist had been recommending a biologic for several years, but I was scared to start because of the fear factor. The AIED was still responding to the Methotrexate. The AIED is now also responding positively to Humira but is occasionally flaring (the feeling of fullness and constant ringing returns. It comes and goes.). I have permanent hearing loss in that ear and it’s not something to mess around with (AIED can lead to permanent vertigo). I don’t know what to do about the fear factor of Humira, but for right now, it is the right thing for me. My dermatologist’s PA said I would be in a wheelchair by age 50 if I don’t take treatment seriously. Best wishes to you.
My son had his 1 set of 4 injections for chrons. I’m in tears reading the dangerous side effects. We wasn’t told of them only that to ignore the long list as it’s the same as warnings on paracetomols, they have to list everything by law but not to worry. Well I am after reading real stories. I wished his funding for vandiblumab was approved as there are hardly any side effects. Need to chat to his doc tomorrow about this or I won’t settle. Cancer, nerve damage ect is not something to be taken lightly.
so i have crohns and arthritis both active inflammations and i take humaria every week. im only 15 so my dad has to help. humaira has basically helped give my teen years back. i used to be in and out of the hospital and ever since i started it i havent been admitted (its been 7 months) instead of needing the bathroom 7+ times i go maybe 2 or 3 and my range in motion in my joints is so much better too. personally i find it very useful
My son is 18 just diagnosed with crohn’s. Mild case no symptoms really and hasn’t started any meds yet. But the doctor is pushing to start him off on humira I don’t understand why he wants to use such an aggressive approach for a mild case. Can anyone help with this issue. Thanks