Tuesday, December 31, 2013

PBAfacts.com: No Laughing Matter

A couple of nights ago while watching TV, a strange ad appeared and caught my attention before I could fast forward.

The ad showed "People who Burst out crying" and who "lAugh uncontrollably." At first my wife and I thought it was a Robert Smigel, SNL comedy spoof. My wife asked "Is this for real?" Then we realized, yes, it was for real. It was a PseudoBulbar Affect awareness ad by Avanir Pharmaceuticals, which markets NUEDEXTA, a treatment for this condition.

The ad promoted a free PBA "Facts Kit," which includes patient stories and one of those "self assessment" quizzes. It urged me to go to the web site -- pbafacts.com -- to get the booklet. I'm on the site now. Here's what it looks like:

Click on image for an enlarged view.
I have a few issues with this campaign.

First, I cannot get the "Facts Kit" unless I sign up/register on the site. "Remember to write down the USER NAME and PASSWORD you receive," says a footnote. "You’ll need this information to enter the site and start learning more about PBA."

I thought site registration was consigned to the Internet marketing junk heap. Forcing people to enter their personal information before granting access to a site is a sure way to limit visitors.

On the other hand, if you are looking for qualified leads, I guess registration makes sense.

In any case, you can get some information without registering; i.e., two videos. One is the latest version of the TV commercial I saw and the other features the physician who designed the educational program. He urges visitors to sign up.

Only after you register and answer a "few more important questions" can you get "full access" to the site. The additional questions are pure market research about your symptoms, how likely you will talk about PBA with your doctor in the next 3 months, and which doctor you will talk to.

OK. I'm signed in under the name "Pharma Marketing" using an email address I just made up. Luckily, I was able to use my PO Box address rather than my home address so my personal mailbox won't be stuffed with more junk mail. For the record, I did use my actual office phone number. I would be surprised, however, if someone called and asked for "Mr. Marketing."

So now I am able to take the PBA assessment "tool," which was developed by "healthcare professionals and is called the Center for Neurologic Study-Lability Scale (CNS-LS)." I was assured that my answers to the seven "simple questions will help your doctor determine if [I] could have PBA."

The source of this tool seemed vague, so I search for it on Google. The first item to pop up is this pdf version, which is on the NUEDEXTA drug.com Web site!  This is copyright 2010 by Avanir Pharmaceuticals and includes a scientific reference (which is NOT mentioned on the PBAfacts.com version): Moore SR, Gresham LS, Bromberg MB, Kasarkis EJ, Smith RA. A self report measure of affective lability. J Neurol Neurosurg Psychiatry. 1997;63(1):89-93 (find the article here).

I'm not sure if this study was sponsored by Avanir, although the copyright notice may indicate that it was.

In any case, I took the test and answered fairly honestly considering that my humor is an acquired taste and I often find things funny that others do not and I like to laugh. Here are the results:

Click on image for an enlarged view.
Of course, I scored way above the cutoff score of 13, which "accurately predicted neurologists’ diagnoses for 82% of participants" in the above cited study. Or, as Avanir says, "may suggest PBA symptoms and should be discussed with your doctor."

Over the many years I have taken these tests, I have learned that I "may" have ADHD, erectile dysfunction, Low-T, and now PBA. As I said before, I have never met a self-assessment test that suggested that I am fine and do NOT need to talk to my doctor.

The site also includes the commercial I saw on TV. It's not possible to embed that video here, but I can embed any earlier version, which I found on Youtube (here):

This video was not uploaded to Youtube by Avanir, but by an individual. Looking at some of the comments (see samples below), I understand why Avanir would not post these commercials to Youtube or allow them to be embedded in blogs.

Here are some of the comments:
"I feel for the folks that have deal with this, but perhaps the people that created this commercial could have come up with a better message to raise awareness of PBA! Watching people laugh makes us all laugh."

"I literally looked up this video in order to laugh uncontrollably. This is the funniest commercial ever."

"When I first saw this commercial I thought it was a joke, like a skit from a comedy show. This commercial gives me and my husband PBA. We even saved the commercial to show my Mom who came to visit this last weekend. We watched it at least a dozen times & laughed til we cried…"

"I was watching SNL and this commercial came on, I didn't realize that it had gone to commercials…"
A few people thought PBA was a made up disease invented by Big Pharma to boost profits. Here's an example:
"This IS garbage. They make up condition after condition, ANYTHING to pump more money in to the ever growing abyss; The corrupt multimillionaire pockets of the pharmaceutical companies."
I don't believe PBA is a made up condition and for some people it is no laughing matter:
"After having a stroke last year, this is not a funny commercial for me. It's a daily struggle and is not a laughing matter. You should all be ashamed of yourselves! Grow up!"


  1. Anonymous11:30 PM

    Thanks for this! I was curious but didn't want to sign up for an account.

    Oh, and good idea about making up an email address on the fly. Never thought of doing this before, but I like it.

  2. Anonymous3:09 PM

    Thanks for the diligent assessment of this topic. After seeing the commercial I understood exactly what it was referring to and wanted to know more about the actual condition but not the pushed marketing. Myself recently been diagnosed with “Chronic Lyme” (Stage III Lyme) – another misunderstood and controversial condition known to have a heavy impacts the nervous system – I’ve been misdiagnosed for neurological and behavioral conditions similar to PBA, such as: Depression, Bi-polar, anxiety, chronic fatigue, and the list goes on. So with the time I’ve saved in personal research by reading your synopsis on the PBA topic, I wanted to say thanks!

  3. Anonymous9:24 PM

    Thanks for the blogs about this strange commercial. I also went to the website and tried to get information about PBA (it did seem like it was an effort to inform the public about the problem which only some individuals might have) but I couldn't get the information unless I made up symptoms! So much for the educational aspect!

  4. Anonymous12:47 AM

    First let me assure you this is a real disease caused by a brain injury such as a stroke, or a disease such as ms. My sister suffers from PBA , you have no idea how this effects people and families. I looked at your answers to the questions and I doubt they were truthful as you really have no idea what it means to be out at dinner and suddenly cry, no actually wail uncontrollably. To be misdiagnosed as depressed when you are not. Maybe you should do more research on the people effected by PBA before you spout off. If your annoyed by the sign in simply don't. Some people are helped by the medications others can not take it at all. But if this site helps someone understand their disease or one doctor to listen to them, then job well done. Oh and by the way I am a registered nurse and I did my research. Go see the documentary coming out. Educate yourself.

  5. Anonymous5:03 AM

    The real story here is the drug being marketed - NueDexta a combination of Quinidine, a nearly obsolete cardiac anti arrhythmic and dextromethorphan, over the counter cough syrup. Someone worked hard to get Quinidine, which used to be available generic for pennies a dose, taken off the market. This angered cardiologists who still used it for one rare condition. If Quinidine were still available it would be possible to combine a $5 Quinidine prescription and a bottle of cough syrup and avoid paying the $750/month price of NueDextra,


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