Three weeks ago Johanna Ryan and Kim Witczak wrote a letter to Stacy London about Humira and AbbVie. They were hoping for a response but there has been none so far.
There’s something about Stacy
Stacy London of What Not to Wear fame has a lot going for her. She is a successful business woman, style guru and role model for women around the world. AbbVie must be delighted to have her partner with them in their campaign supporting psoriasis sufferers called Uncover Your Confidence.
“Through the Uncover Your Confidence campaign, I hope to inspire others living with psoriasis to be self-assured through their own personal style, stay positive and find the right dermatologist to help them manage their disease”
You see, AbbVie sell Humira.
The HumVie
Humira is a monoclonal antibody – one of the new biological agents that acts on the immune system. Its side effects can be so nasty it has a black box warning on it.
Despite this, it’s on its way to becoming the best-selling drug of all time. You don’t get to be a best-seller on this scale without pushing the marketing envelope way beyond those who are seriously enough ill to warrant taking risks with a dangerous drug. Without running a marketing campaign that is to old-style drug marketing as a HumVie is to one of the smaller European cars.
The company have already been warned by the FDA for promoting Humira for milder conditions and misleading about its safety. The marketing includes many emotive messages – with images suggesting children are repelled by a single patch of psoriasis.
The marketing of Humira shows how healthcare is being transformed into a Humiraverse, in which celebrities can have a part to play.
What’s a nice girl like you doing in a place like this
Companies often recruit celebrities to front disease awareness campaigns to increase sales of their drugs. It’s one thing to use celebrities to front fashion campaigns. Selling drugs is trickier.
Psoriasis is an unpleasant disease. My father had it till the day he died and I can remember the coal-tar, ultraviolet light treatments and endless steroids.
It would be great to have a magic wand to wave over all sufferers to cure it. But you wouldn’t knowingly take chemotherapy to treat a patch of scaly skin on your neck.
Humira is not a magic wand. Would someone who develops a cancer after taking it think it was worth it? What would Cynthia di Bartolo say?
You would be forgiven for thinking after seeing this campaign that Stacy had taken Humira and that’s why she looks great and seems to have no problem with psoriasis. But as she reports in her book, Stacy had a tonsillectomy at 17 which resolved her psoriasis.
“Not only did the operation clear up my skin,” she writes, “but I haven’t had an outbreak of psoriasis since.”
This is not a blame Stacy pitch. It’s almost impossible not to become part of the Humiraverse these days. As outlined elsewhere on this blog companies can even put lectures by me about the risks of suicide and homicide on SSRIs to good use to increase the sales of these same SSRIs.
But there is something we all can do that can make a difference – we can AbbVie. And no-one is better placed to do this than Stacy.
Stacy goes to London – or not
Whether part of their HumVie marketing campaign or not, AbbVie have taken an action against the European Medicines Agency, which is based in London. They are trying to block access to data on the side effects of Humira. If they win they will block access to all data on all drugs.
In a desperate effort to counteract this, a few of us have launched an AbbVie campaign several weeks ago.
One of the people who could give this campaign the profile it really needs is Stacy. She can support psoriasis sufferers as she has always done or can really do something significant for psoriasis sufferers and everyone else who is taking any medicine for any reason, by helping to make everyone aware of the risks AbbVie’s legal action poses to everyone. A letter from Stacy in support of the European Medicines Agency policy of open access to clinical trial data would be really powerful.
What not to eat
Stacy is famous for her What Not to Wear campaign – helping people to dress better to feel better about themselves.
Helping people use drugs better would improve the lives of millions. But we can’t use drugs better if we don’t have access to the basic information about them.
Many drugs can cause skin problems – which can be devastating. Stacy could look at the RxISK skin zone. Here you can find a collection of drugs that cause skin problems as side effects. Many people are not aware of this and they can have devastating consequences. Stacy has outlined in her book just how devastating the harmful effects of steroids were on her skin – because she hadn’t been given the right information.
Johanna and Kim wrote to Stacy on July 26th. No response. Keep checking here. We’ll keep you posted.
Illustration: Humira: Yes, “death” is a possible side effect, © 2013 created by Billiam James
The more I see of AbbVie’s “psoriasis awareness” campaign, the more I’m struck with the mind games they’re playing. On the one hand, they tell us we’re wrong to think of psoriasis as a “mere rash” that’s primarily a beauty question – it’s a serious disease. On the other hand, they zero in on the self-esteem issues and resulting depression that plague many patients, especially women … because of the social stigma.
So it is looks, after all, they want us to focus on. And wrapping this up in a feel-good “anti-stigma” message from Stacy London is the perfect soft sell.
What to do about all that stigma and shame? Is AbbVie running ads to tell the public that no, psoriasis isn’t contagious, or a sign of poor hygiene? Are they really helping women with the disease feel good about their whole selves? Nope. In their ads, attractive young people are out living their lives when suddenly someone looks askance at the scaly red patch on their arm or neck, and they feel ashamed.
http://www.ispot.tv/ad/7Vpq/humira-niece
That’s when they make the decision to talk to their doctor – and get some medicine that will “work inside their body” to clear up their skin so others will accept them! The litany of scary side effects like TB, fungal infections and cancer is overwhelmed by the soft-focus video stream of the patient’s happy new life.
If this is an anti-stigma campaign, I’d hate to see what stigmatizing looks like …
Thank you David Healy for helping to uncover the misselling of pharmaceutical drugs and enabling the public to become aware of just how much the industry continues to underplay the serious side effects of today’s prescribed drugs.
At the moment I am on Tocilizumab – similar to Humira, in that it’s an immunosuppressant biologic used to treat moderate to severe RA. Unfortunately it suits me best to take it at the moment as I have severe RA. While I still struggle with a certain degree of pain and many symptoms associated with Rheumatoid, before treatment I was in extreme pain and physically very limited. Due to this my mental health also significantly deteriorated, and I was at greater risk of serious complications resulting from this disease ( there are many ). However, I am all to aware of the serious risks to these drugs… I have to contend with many side effects but luckily they all seem to be on the minor end of the scale but definitely not pleasant nonetheless! I am just looking forward to the day researchers come up with less toxic treatments for such diseases. I am also hoping that, at some point in the not too distant future, I come off all drug treatments for a time so as I can have a family, when and if I decide to. However, I am aware this will be a particular challenge not only for me but also for those treating me due to having such an aggressive form of RA. I guess that’s all the more reason to look after myself to a greater degree than I have been.
The decision to take such medications is very personal one, which you are only likely to encounter if you have a serious autoimmune illness. However, I would certainly say that unless you have moderate to severe illness, then the risks may just outweigh any benefit…It’s definitely not a decision to be taken lightly.
It is vital that people are made aware of just exactly what it is they are taking or being offered as a potential treatment. Drug companies and prescribers should always explain the possibility of any side effects, especially if they may be serious and/or detrimental to quality of life.
Having to be on such harsh drugs is also a further reason for me not taking a mood stabiliser at this time ~ maybe not so logical but it’s just too much! The decision to go back on an antidepressant was bad enough but one that I have come to terms with at this juncture. It may not be the best or even a recommended treatment for Bipolar but it is one which I am currently content with for myself. And yet another reason to take care of myself more thoroughly and holistically.
Humira
Almost killed me
Should not be on market
I will be seeing Stacy London in a little over a week…should I ask her? I see this post is a couple years old.
Yes please do
Would be wonderful
DH
I was diagnosed with Psoriasis and Psoriatic arthritis in the Spring of 2015. The first doctor told me that I would be in a wheel chair in six months. I decided, with the drs encouragement to get a second opinion. Which was the same diagnosis as the first doctor. I like my current dr. I told him I was not intested in any biologic, that was the last and I mean las choice.My sedimentation rate and c reactive protien was quite good for someone on no precscriptions. My skin was fairly clear too. During 2016 did the sulphasalizine and mtx. Sed Rate started bouncing around, again dr had the Humira talk with me. I refused again. Told him was not interested in Humira or any other biologic. Two weeks ago had more blood work done. I changed somethings. I told him I felt great. Took more blood test results , my sedimentation rate 10 and my c reactive protein down to 11.8. Both 60 plus percent decreases. HE STILL WANTED ME TO GO ON HUMIRA. ARE YOU KIDDING ME. I KNOW PEOPLE WHO CAN NOT GET BELOW 55 AND 30 on a sed rate and c reactive protein ON HUMIRA. He said their was a small change in a couple of toes. I asked him if it was big change or little change. I asked him on a scale of 1 to 10. Was it a 2 or 10? He said it was a 2. My doc works for a large state university system. Maybe Abbvie has given out some free samples to university. Hmmmm. Amazing I make great numbers almost normal , in fact my sedmination rate is below normal. Geez. Some of these drs have been brain washed by pharma
Hi ,I was wondering if anyone has a positive reaction to humira? I’ve had arthritis in my back , hips , knees and feet for over 20 years , didn’t know for sure it was connected to the psoriasis until today. which isn’t horrible , mostly on legs ,hips . I don’t have a spleen so most rhuematologists didn’t wasn’t to start me on any of these drugs. there are however , times way intense , like screaming in a pillow kind of pain that makes my heart race because of the pain, it’s getting worse so a dr said humira was the best answer. I have had to take narcotic pain meds for the pain and I had hoped that possibly the humira would relieve the inflammation and pain as I have also been on 6 Aleve a day for years an now have ulcers in my esophpgus and stomache. I don’t have many options anymore. I hoped maybe someone reading this may have lost a spleen but did well on humira. Thanks
Hey Laura, I saw your post,,,I have crohns and no spleen,,, my Dr. has been trying to get me to take humira for a while now but I am very hesitant, I was wondering if anything had changed with your situation since your post,,,I have not found alot of information about our particular situation,,,why would I want to take something that is going to affect my immunity when it’s already compromised?
My healthy 27 year old son died off the side effects of HUMIRA. A horrible, devastating death. If anyone wants more information, I will share. Don’t take the BLACK BOX DRUG!
So so sorry to hear this… I have been taking humira for 4 months… if you feel able to share any info, without causing you to much trauma I would be grateful to hear. Many thanks
My 8 year old daughter has had arthritis since2. She’s had uveitis since 2014, and now has cystoid macular edema and could go blind in her right eye. We’ve tried everything she’s gluten free also. But now she’s on methotrexate and Humira. But her joints are getting worse. Nurse practioner said she’s sure they’re keeping her flare up at bay. WhTs your suggestion?
Please share about your sons deatj due to Humira.
Hi Marlin, I’m so very sorry for what happened to your son & what you have to go through every day. I’m also sorry to bother you but I’m a 32 yr old male who has a rare disease. CRMO Is the term used for what I have. I’ve been on Humira for about 16ish years now. It helps better than any thing b4 with my excruciating bone pain but I’ve had so so many different side effects with Humira over the years. I come across your comment and would like to know about your son if you’re ok with discussion on his condition and use of Humira to treat it. GodBless Marlin & always remember that your son is in a better place no longer suffering. I believe that You’re son is with God & God is with you always & That you will be together again! Thank You Marlin..
According to the Fda Adverse event database Humira caused 1844 deaths in 2017. Simple math tells you that 5 people a day in the United States.
Update I hit a 3 on sed rate and 6.8 on the c reactive protein without any biologics. Only 3 cheap prescriptions and I can get rid of at least one of the presciptions.Biologics are an expensive dangerous short term solution.
Hey RM
How would you like to share your secret?
I have just been put forward for a randomized double blind test featuring both Secukinumab and/or Adalimumab
After a bit of research I am going to decline but I also want to get off Methotrexate because it makes me so ill even though it kinda works ……I think
Cheers
Daryl
According to the data on the Federal Adverse Events Reporting System (FAERS) available on the FDA website, fis.fda.gov, Humira is currently associated with 12,052 deaths.
Given that the death rate with Humira is so high, and the fact that the market is currently flooded with alternative immunosuppressive medications for autoimmune diseases that are less dangerous to patients (Stelara, Entyvio, etc.) I cannot understand why there is not currently an intensive post-market surveillance effort on the part of the FDA.
I was diagnosed with Ulcerative Colitis in the fall of 2016. I went through several meds trying to get it under control. At the end of June 2017 my GI put me on Humira. He indicated that the major side effect was a type of cancer but it was very rare. Long story short on August 28th I was admitted to hospital with what they thought was double pneumonia. The next day I was on life support and transferred to another hospital because they said I was dying and nothing else they could do for me. I was still on life support and transferred to yet another hospital and put on ECMO along with the ventilator. After 5 weeks of being in a coma and on life support I started showing improvement which continued. After a couple more weeks was transferred to a rehab facility where I had to learn to walk again and everything else. I had some sort of fungal pneumonia from Humira and came very close to dying
I have severe RA. Do I want to be on Humira? No…but it has given me my life back and has up until this point slowed down the joint deterioration in my feet and hand. I think folks are missing that when these drugs are in trial phase ANY side effect needs to be reported, even a sneeze and there is anecdotal evidence to suggest that some folks were predisposed to certain cancers and illnesses with or without biological. It is a risk, but for many of us that small risk is undermined by the benefits
My best friend just died of different infections at age 45. It was never narrowed down completely. She was in the hospital for a month and her entire body shut down. The doctor’s said she was the sickest patient they had in our state and couldn’t treat her nor did they have answers to how this could happen. She was on Humira for her PsA. Beware.