So I was meant to write a summary of SXSW but I wanted to write about a post I saw today on J&J’s Facebook about autoimmune diseases (and in case you can’t be bothered to scroll through Facebook here the post on the J&J blog). There were a couple of things that struck me.
First the volume of engagement the post caused. It was not just a few standalone comments but people were in active discussion with each other. I have rarely seen that level of open, heartfelt conversation around a pharma post. The discussion also really resonated with me, as an autoimmune patient. The post was sharing the story of three autoimmune patients who overcame the struggles of their disease to get their lives back on track. Of course the thing that helped them all was pharmaceutical products and whilst no brand names were mentioned it is not a huge stretch of the imagination to realise they were talking about J&J products.
Whilst a few people were positive about the post, and how inspiring it was to see patients fight their disease and be able to overcome it and lead a relatively normal life, others had a very different point of view. What they pointed out that actually many patients do not have the option of “overcoming” their disease and leading a normal life. For many patients with an autoimmune disease there is no adequate treatment and daily life is a constant struggle.
In fact one lady pointed out that these types of articles actually can have an adverse effect on patients as friends and family share them to show that other patients have managed … so why can’t you? It can help foster the issue that many patients have were friends and family just do not get the struggle and perceive the disease to be something you can “get over” or something that is more in a patients head than being really that bad.
As an autoimmune patient myself I can tell you that despite medication (and I am 100% compliant btw) things do put me off kilter (like gluten). When I am off kilter I can feel absolutely bloody awful. It is not in my head – it is very real. In fact since my last post, where I spoke about my brain fog and fatigue, I’ve had to experience one of the other nasty glitches this disease causes – emotional “trauma”. I call it trauma because it is very upsetting. I have always been good at controlling my emotions and generally am a very level headed, laid back person but when my Hashimoto’s rears its ugly head my emotions can get all crazy. I would liken it to the emotional turmoil some women go through during their periods. One minute I’m fine and then next I’m bursting into tears. I become over-sensitive and the slightest thing can set me off and become a huge issue. The impact this can then have is that my over-reaction upsets me and makes me even more upset, spiralling down into an ever darker vortex. It can take days for me to be okay after this and can lead to my depression re-appearing.
I am fortunate that I know myself well enough, and have battled depression on and off over the years (thank you Hashi’s!) that I have some great coping mechanisms (and some awesome friends who I can talk to). Yesterday I was blubbing my eyes out, feeling like there was a raw gaping hole in my chest, today thanks to some of these coping mechanisms it is more like a small sore. Tomorrow I will still be fragile but hopefully with care and self-patience in a few days this will all be just a bad memory and I will have my life back. I am also fortunate that I have a job I love because it also really helps to just focus on my work and bury my head in that rather than dwell on the rollercoaster of emotions that is waging its own little war in my body.
And so I come onto my second point about the J&J post. With all of this engagement happening as I went through all the posts there was one glaring omission. There was absolutely no response from J&J! What a wasted opportunity to really engage in a meaningful dialogue with your customers (and yes your patients are also your customers – not just HCPs). Where was even the “thank you for your comments” type of response? Nothing. A classic pharma one directional post – a “here you go enjoy but we don’t want to talk to you” attitude. As an autoimmune patient I really welcome that J&J is sharing posts on this disease area, which gets so much less spotlight than cancer or heart disease, and yet impacts just as many, if not more, people. I would have liked to thank J&J for the post and the subsequent discussion and would have valued their input into the dialogue.
Yes we are talking about patients where J&J medications have not had this same positive impact but what a great opportunity to show that you still care – and perhaps if relevant to point out how much money you are investing into R&D in this area. It is also a fantastic opportunity to engage with patients and learn some valuable insights, which in turn could help generate even more engaging content. I could imagine this would make for a great tweetchat or other posts pulling out some of the issues highlighted in the discussion. Having worked for pharma brands I know the constant struggle to find that golden content that resonates and works. Here it is being handed to J&J on a platter.
J&J you hit gold with your post but rather than mine that gold, and share its riches, you have just let it lie and fade.
Oh and by the way one of the patients in the post also joined the conversation … making J&J’s absence all the more glaring. Hats off to the said patient – for sharing her story but also for the compassion, and openness with which she joined the discussion.