INADEQUATE WARNINGS AND AN IGNORED MODEL

It certainly appears that Amgen is not about to warn patients of the consequences of even a short delay in getting the semiannual Prolia injections. 

See, for example, https://www.ispot.tv/ad/w8q3/prolia-hiking-featuring-blythe-danner.

When you get a Prolia injection, the nurse may give you a card like this:

As a warning, this card has no more utility than the little card you get for your next dental cleaning!  No warning whatsoever about the danger of even a short delay.  (The only thing added besides the date was the "+ 1 week" to assure Medicare payment!)   

So I urged Dr. B. to at least warn her patients.
She did so by means of this red-bordered card she said she now gives patients on Prolia. 

This is one doctor's apparent effort to warn, but it cannot begin to have the outreach of a large pharmaceutical manufacturer that advertises on prime time TV with a well-known actor touting the vaunted advantages of Prolia.

However, this doctor's attempt fails to mention:  
 1. The danger of even short delays,  and, 
 2. information about what to do if unable to keep an appointment, and, 
3. What to do and, most importantly, WHOM TO CALL if you are blocked by the "front desk" for ANY reason, as I was when I tried to explain the importance of getting that Prolia shot on time even though the new doctor did not have an opening for an appointment yet!   


I tried to explain this in the draft handout below.   

It is important, for example, for a large medical center especially, to provide a phone number should an appointment change be needed, answered by staff prepared to warn patients of the consequences of delay.  

This draft leaves space for such a number to be included and gives a stronger, much clearer warning! 

/////////////////////////////////////////////

[To be given to EVERY Patient with EVERY Prolia injection]

DEAR PATIENT:  

Please READ this CAREFULLY!   

Ask your DOCTOR to explain anything you do not understand!

You have been prescribed a drug called PROLIA®.

This drug may help keep your bones strong.  

Your Doctor can explain this to you.

PROLIA must be injected every six months.   

Your next injection is scheduled for [date].

YOU MUST GET YOUR PROLIA SHOT 
ON TIME!!!
  
EVEN A SHORT DELAY CAN RESULT IN PAINFUL BROKEN BONES!!!!

IF FOR ANY REASON YOU CANNOT KEEP YOUR APPOINTMENT FOR YOUR NEXT PROLIA SHOT ON [DATE], CALL (###) TO SET UP ANOTHER TIMELY APPOINTMENT.  

IF YOU ARE PREVENTED BY ANYONE IN THIS OFFICE FROM SCHEDULING YOUR NEXT PROLIA SHOT ON TIME,  CALL (###) ###-#### AS SOON AS POSSIBLE TO ARRANGE FOR A TIMELY PROLIA INJECTION. 

///////////////////////////////////////////////////////////

If every doctor administering Prolia gave patients a warning along these lines, including the name and telephone number for someone who could intervene if, for any reason the "front desk" prevented the administration of Prolia on time, I believe much suffering could be averted. Mine certainly would have been!

Also, patient records and other files should be RED FLAGGED to alert ALL staff (including schedulers) that this patient is on Prolia and that their injections must not be delayed. 

I specifically asked about this when I was told that  the new doctor could not see me for months after my shot was due.  I was told that I would have to wait until I saw her to get that shot.   I assumed this was correct information.  It wasn't.  And it left me with severe pain and disability now nearly entering a third year.   

So while patients would benefit from a properly worded reminder card, office staff WORKING UNDER THE DIRECTION OF THE MEDICAL PROFESSIONALS must be prepared to convey proper information, instructions and reminders as well!  

Also, in the wake of many cases like mine that I am learning about, Amgen needs to take necessary steps too, beginning with using the five letter word word "DELAY" in its warnings to patients! 

Medical professionals may understand that words like "discontinuation" and "stopping" are enough, but patients information definitely requires warnings using the word DELAY as well.   

This is why -- even though I'm just one person, and in pretty bad shape even to be sitting up to do this --  I'm doing what I can to get the word out to as many people as I can reach.  Because no one else seems to be doing it!

This blog is part of that effort!