I know a lot of my readers are MSers and quite a few of you may also be members of www.patientslikeme.com. If so, did you get the invitation to participate in a survey recently?
It was a survey titled "If you could choose the packaging for a pill for MS, would it look like this?" Normally I am hit or miss on the surveys I take. It depends on my mood. Sometimes I have even been know to delete emails from places like that without even reading them if I haven't weeded my email account garden lately and I'm going nuts trying to spruce it back into shape. I might have 100 unread emails and if they look spamy in the least, they're history.
Why I chose to open this email and respond before I even saw the title, I can only attribute to serendipity.
As I suspected, once I started the survey it was instantly clear to me that the medication in question was Gilenia, Fingolimod, FTY720, that Chinese fungus, whatever you want to call it.
There were 3 videos included showing 3 prospective packaging ideas.
The first one appears to be some contraption that is made of plastic, has windows where you can view your medication packets that are blister packed inside. You slide the guts out, push your pill through the blister pack, slide the guts back in, and tilt the whole contraption so that the pill "dispenses" into your hand.
The days of the week are clearly marked beside each pill so you can easily see which pill you need to take next and if you already took the one for today or not. Kind of like it comes in it's own pill minder box or something.
Now, I had copied all the questions and my essay type answers to a notepad file but got distracted by something before saving it. Then I forgot about it and went to bed. This morning I wake up to find my computer had rebooted after installing updates (I thought I had changed that setting! Doh!) and so I lost all my witty answers and their respective questions.
I did save a file that had the urls of all their youtube videos that they used in the survey. I am not sure what the ramifications would be if I shared them here as they were not shared on youtube.com. Erring on the side of caution, I'll just describe their use as I witnessed in the video.
The next prospective package looks like samples you might get at a doctor's office. The package initially looks like a little cardboard "book" and you open it up to reveal your pills -- all marked with the days of the week -- embedded in the book in a blister pack. You open it all up, find the correct day, push the pill through the blister and it falls into your hand underneath. You fold the book back up and slide the whole thing into another cardboard sleeve much like VCR tapes used to come in.
This one looks like a huge waste of paper to me.
The last one looks like any other capsule type medication you might buy like say Benadryl. Open the box, slide out the cardboard card with blisters on it, push the pill through the aluminum foil backing. Still, in my opinion, too much packaging.
What I told them in the area they gave me for comments on the survey is that I have been in this study for 3 years now and have only missed a grand total of 3 pills due to not planning ahead and being in the wrong place at pill time (all 3 times I was 30 min or more away from my pills).
I do not need a pharmaceutical company to tell me what day it is or when to take my pill. I can get a pill minder for that for just a couple bucks at CVS or Walgreens. No doubt it will cost much less that way than having my pills already come in some kind of pill minder.
I also told them I had taken Copaxone for 8 years prior to getting into the study and that stuff doesn't come all labeled with the days of the week.
I guess they mean well, but it's my impression that they are going to go with some type of outrageous packaging in order to justify the cost of what they're planning on gouging us for. If they are really concerned about the compromised dexterity of some MSers then perhaps the final choice with just the simple foil back blister pack might be the way to go. But really, anyone with problems getting their pills out of a bottle already has devised a way to do this for all their other medications, haven't they? Why special (read: costly) packaging for Gilenia?
They wanted to know my impression on how child-proof the packaging was at the same time, how easy it was to dispense for the intended patient.
What I want to know is WHY are they trying to reinvent the wheel, or in this case, the bottle?? See that bottle at the top left of this screen? That's what my medicine has always come in since starting this trial. They are not worried about impressing me with its looks at this point, so I imagine I'm actually receiving the pills in the most cost effect container at this time. It has a childproof cap.
Voila! Stick your label on it and call it a day.
I think most of us who have to take other things on a daily basis such as our multivitamin or prescription drugs will be able to figure out how to remember to take our pill every day. Please leave the cost of the hand holding out of the equation.
What we really need, that you didn't bother to ask, is to give input on how much we can afford to pay for this new medicine. Why didn't you ask about that, Novartis?
Keep your fancy Pez dispenser and just give me some pills I can afford. Thanks.
4 comments:
Hahahahaha, you so crack me up! I got one of those surveys from PLM also but I am so self-absorbed that my comments were all about how I don't want to drop pills on the floor because A: I can't always easily find them and B: my dogs can. Your comments were much better thought out.
I didn't even think to remark about the ultimate cost of these things when they go to market. D'oh!
And HELLO, if those pills pictured were not the same ones we've been taking for the past however many months, I'll eat my cat. Raw.
Good girl!
Thanks for sharing your experiences! I've told my neurologist to put me on speed dial for the release of Gilenia, which looks like October 1. The basic bottle of capsules would be fine with me, although I doubt they'll be going that route!
Amy
Fredericksburg, VA
Dxed in 2004 with RRMS
Love your commentary on the survey and the choices presented in the survey. I got the same notice at PLM and answered the questions posed. Within the open boxes, I kept mentioned the packaging waste. Geez, why not simply use a normal prescription bottle? And why exactly would we need to worry about carrying the drug around with us every day? Many of the questions didn't make sense.
Lisa, I agree that their questions were odd. It's like they want the newly diagnosed to choose Fingo or something. Not anyone who has already acclimated to having to transport or refrigerate shots.
Why do they want us to carry it around? LOL And one of the questions even asked where you'd be most likely to store it and a possible answer was "in the car". Now, WHY on earth would you store your medication in the car?? These capsules are not indestructible and heat WILL affect them. It says right on the bottle (in a little thin leaflet under the label in 15 languages) that you are NOT to store it above 77 degrees. My HOUSE is sometimes above that, my car pegs out at about twice that when parked in direct sunlight all day.
And in my opinion, NONE of the packaging they presented was childproof. More child friendly than a regular old orange Rx bottle with the childproof cap.
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