I recently
saw an Orencia commercial (see end of post to watch commercial) that stopped me
in my tracks because it is so different from other RA medication
commercials.
The commercial
portrays a woman doing everyday things, like turning a doorknob and walking up
stairs.
And I have
to wonder. Is pharma starting to listen
to us?
I can’t tell
you how many times I’ve sat in meetings with pharma and the continual trope from me and other patients is that the
commercials don’t represent us and portray the disease in a way that makes the
general public not understand the significance of the disease.
One thing I
don’t know is whether the people featured in the commercial actually have
RA. Many pharma companies say they
cannot use real patients. However,
Gilenya, a drug that treats multiple sclerosis has done just that and features
real patients who are on the medication, including my Stanford Medicine X
friend Jamia.
This is
definitely a step in the right direction.
This is the sea change that we need.
And it proves that if we raise our voices loud enough and we complain
often enough, and we speak as a collective voice, we can get things done. Change is possible.
And maybe
this seems like a really basic or obvious change. But I think on the part of pharma, they don’t
see it that way. They have fundamentally
changed how they talk about RA and what their medications are realistically
able to do.
The
commercials out there that show patients building playgrounds also create
unrealistic expectations on the part of patients. And this perpetuates the discourse that
patients fail medications, when it reality, medications fail patients. By showing situations that the majority of
patients won’t be able to do on a good day not only makes patients expect that,
that is how the medication will work for them, but that when they don’t
experience it, that they have failed in some way because it should work for
them the way the commercial shows.
I won’t call
out here the specific medication whose commercials seemed to offend more than
others, because you probably know which one I am talking about. But I’ve always resented them. I always wanted to throw my TV out the window
when the commercials came on and someone was building a playground or baking
1,000 cupcakes, things that I probably wouldn’t have done pre-RA. The commercials always left a bad taste in my
mouth and felt like false advertising.
Maybe
there’s some bitterness that the medication didn’t work for me and my
experience with it was pretty dismal.
But I wasn’t the only one. And
that has bothered me a lot, too. When
patients are traumatized by painful auto injectors, and patients have trouble
accessing pre-filled syringes, which still burn, but not as bad as the auto
injector, someone should be listening to that, and finding a way to change it.
So maybe
this goes beyond commercials. It speaks
to patients having a voice when it comes to the medications that are on the
market to treat us, and even medications before they even come to market. It speaks to patient centricity, and what
that means and doesn’t. Patient
centricity means involving patients from go.
It means bringing them into the conversation and keeping them around
long enough to make it matter. It
doesn’t mean bringing just a few patients into the fold. It means actually hiring patients to work for
pharma.
Just because
you can’t build a playground or bake 1,000 cupcakes, doesn’t mean that you
don’t have a voice. Every patient
matters, regardless of illness severity, and whether medications work for you
or not. Sometimes opening a jar or a
door, of climbing a few stairs, is the best we can do. If medications promise more than that, then
that is what they should deliver. We all
have to be realistic. Granted, climbing
stairs and opening jars isn’t sexy, but that’s the reality for so many of us
with RA.