Monday, January 25, 2016

On Building Playgrounds And Baking 1,000 Cupcakes

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.  

video

Tuesday, January 5, 2016

2015: Year In Review

I contemplated not doing a year in review post this year, considering the way the year ended.  I really don’t want to dwell on the past, and what has happened recently has been incredibly painful.  But I also want to see exactly where I’ve been in 2015, in the hope of figuring out where I want to go in 2016.

2015 was the first full year without my dad, and I really opened up around the details surrounding his death:





I had some highs and lows health-wise, including getting a cortisone shot in my hip that changed my life for the better, and struggling with medication and insurance woes:





My relationship took a positive turn (we got our first place together), and then a very negative one (we broke up):




I got to travel a lot, gave an Ignite Talk at Stanford Medicine X, and did a lot of advocacy work, which were some of my happiest and proudest moments this year:




And I struggled with starting my career and finding the way back to myself:





It’s crazy the difference a year makes.  At the beginning of 2015, my boyfriend and I got our first place together.  2015 came to an end with a breakup with my boyfriend of three and a half years, and a move back to Michigan to be closer to my support system, and hopefully start a new life. 

Of course, these aren’t all of my posts from 2015, but these are the ones I felt were worth highlighting.  You can review the year on my blog if you are interested in other posts that were not included in this review post.

And, as I always do, I am sharing with you a list of the books that I read in 2015:

1.       “The Life-Changing Magic Of Tidying Up” by Marie Kondo (NF)

2.      “Fabulupus” by Jodie Nimigon-Young and Jessica Kundapur (NF)*

3.      “Common Fire” by Laurent A. Parks Daloz, Cheryl H. Keen, James P. Keen, and Sharon Daloz Parks (NF)^

4.      “Tampa” by Alissa Nutting (F)

5.      “Selena’s Secret” by Maria Celeste Arraras (NF)

6.      “On A Farther Shore” by William Souder (NF)^

7.      “The Vanishers” by Heidi Julavitz (F)

8.     “Sick Idiot” by Ashley Boynes-Shuck (NF)*

9.      “The Writing on the Wall” by Regina Holliday (NF)*

10.  “To Selena, With Love” by Chris Perez (NF)

11.   “The Perfect Letter” by Chris Harrison (F)

12.  “300 Sandwiches” by Stephanie Smith (NF)

13.  “League of Mortals” by Duncan Cross (F)*

14.  “United Breaks Guitars” by Dave Carroll (NF)

15.   “Grey” by E.L. James (F)

16.  “Afraid of the Dark” by Tom Henderson (NF)

17.   “14th Deadly Sin” by James Patterson (F)

18.  “Suffering The Silence” by Allie Cashel (NF)*

19.  “Being Mortal” by Atul Gawande (NF)*

20.  “On grief and Grieving” by Elisabeth Kubler-Ross and David Kessler (NF)

21.  “The Day the World Came to Town” by Jim DeFede (NF)

22.  “Girl In Glass” by Deana Fei (NF)*

23. “Wide Awake And Dreaming” by Julie Flygare (NF)*

24. “NYPD Red 3” by James Patterson and Marshall Karp (F)

25.  “Why I Wore Lipstick To My Mastectomy” by Geralyn Lucas (NF)*

26. “The Murder House” by James Patterson and (F)

27.  “The Magic Strings of Frankie Presto” by Mitch Albom (F)

28. “Still Alice” by Lisa Genova (F)*

29. “Inside the O’Briens” by Lisa Genova (F)*

(F) – Fiction
(NF) – Non-fiction

* Books specifically of interest to chronically ill readers
^ Academic books/books for school/my research