An interesting survey

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.

Nothing to report yet...

I've just been poked and prodded more and more.

I went to the consultation with the GI guy who's going to do the colonoscopy and he seemed confident after a preliminary exam that my test was going to reveal nothing profound.

Then I went on Monday and had an abdominal ultrasound. She spent quite a bit of time trying to isolate my right ovary for imaging and it was pretty uncomfortable. Of course she kept that poker face that all techs have to have and I didn't even bother asking if she saw anything. I knew the answer would be "I'm not allowed to say".

In any event, getting my digestive system "regular" again seems to have helped with the symptoms although I still get that fluttering nerve tingling "wack-your-funny-bone" feeling in my lower right abdomen so who knows. By the time they figure it out I'll either be back to normal or really ill.

I have let it go though. I'm no longer stressing over it. I just can't drain myself with worry that way. I think when you do that it only complicates things and increases any pain you might already be enduring.

When I get stressed my stomach knots up. My stomach already is uncomfortable so screw stress.

Now, when I find myself dwelling on all of this in an unhealthy way, I focus on my son and we do something fun together. Hey, if I can't fix what's wrong then doing something fun to pass the time is better than sitting in the dark and worrying. Either way the time is going to pass. May as well have a memory to show for it.

So I've been going to the beach a lot. I had forgotten how calming and soothing the sound of the gentle surf can be. And the cawing of the seagulls as they circle overhead. The sun is not exactly my friend, but we go early enough that it's still relatively cool out and the ocean is warm as bath water. We live on the side of Florida that is almost as far from the Gulf oil spill as you can get -- the NE coast. Even though it was reported that tar balls were found on the beach the other day (and ruled out as far as being from the BP spill) we found the beaches to be pristine sugar sand that felt luxurious on our feet.

Any stress I might have felt before just melts away with the sun, the surf and the gentle breeze in my hair.

And it's nice to see my son with a smile on his face, and no electronics were used in the creation of his happiness.

I'm thinking I get more from the beach than I've been getting from the doctors. At least I come away with less stress than more. :)