The content of this post is somewhat different from the one’s I generally post in my Blog; however, it is my hope that readers will find it not only of interest but a commentary on a critical issue for a growing number of users of prescription drugs.
As many of you know, some ten years ago I was diagnosed with a rare neuromuscular condition called primary lateral sclerosis. This condition primarily impacts the upper motor neurons in the brain that control voluntary muscle movement, adversely impacting my ability to walk normally as well as my balance together with the impacting the muscles that control speech. Thankfully, it progresses slowly and I have fortunately received exceptional medical care by my neurologist connected with UCI.
Approximately five years ago, I began to notice that I was having a difficult time controlling my emotions, particularly unexpected moments of both crying and laughing. I would be watching the evening news (not just stories about Trump!) and a story would come on about a tragedy or soldiers dying in combat and I would find myself breaking down and crying unexpectantly. On the other hand, I’d be watching a comedy and something humorous would trigger laughing over and beyond what would be my normal response to something funny.
Speaking with my neurologist, I was diagnosed with a condition that is not uncommon to persons with neurological conditions such as ALS, PLS, MS and Parkinson’s Disease or those with spinal cord injuries. It’s called pseudobulbar affect or PBA. Perhaps some of you have seen the commercials on TV that highlight this condition such as the following:
Fortunately, there is an FDA approved drug to address this condition. It is called Nuedexta and it is made by a local pharmaceutical company here in Orange County, Avenir Pharmaceuticals. Amazingly, the drug is a simple compound of two very old and common ingredients: Dextromethorphan that is found in many over the counter cough syrups and quinidine a drug that has been on the market for years as an antiarrhythmic medication. The price for these drugs is cheap, really cheap!
For a number of years, I was able to control the condition but in the last two years it was becoming more and more bothersome, particularly in public. I’d be talking about my experience on 9/11 or even simply hearing the National Anthem, and I’d break down in crying. My doctor wisely encouraged me to begin the medication this past summer.
After five days of taking the samples he gave me, I found that appropriate emotional control had ‘miraculously’ returned to normal levels! There were only very slight initial side-effects that subsided in a matter of days and I thankfully could engage in conversations without worrying about a topic that might trigger a crying episode. That’s the good news of this story.
The bad news introduced me personally to the Byzantine world of ‘big pharma’ and the insurance industry and the sky-rocketing cost of drug pricing in this country.
After the initial sample was completed, I called in the script for the medication. To my shock, a 30-day supply of the medication was over $ 1000.00 and with my insurance it was $ 900.00 a month! My doctor and his staff then began the onerous appeal process with my insurance carrier. It appears that this appeal process is still in process, going on over five months! At each level, they reject an appeal for any lowering of price. At this point I am not terrible optimistic that the pricing will be lowered.
The Diocese of Orange has an exceptionally good and generous medical coverage for its retired priests. Our supplemental insurance plan to Medicare is excellent together with our prescription drug coverage through United Health Care. I have been assured that the Diocese will cover this expense even if it is not covered by our insurance carrier. However, at this point I refuse to saddle the Diocese with this kind of outrageous expense without a fight. Fortunately, as my doctor and his staff battle with the insurance company, they are supplying me with free samples of the drug.
My story is only a small chapter in the incredible challenges that so many in our country face who do not have the quality insurance coverage that I am fortunate to have and are faced with truly outrageous drug pricing for a variety of illnesses. Of course, research and development in new and effective drugs requires appropriate funding. However, it is clear that someone is making out like bandits in this scheme to gouge the American public in drug prices that are truly out of bounds.
For those who have stuck with this story this far, the following video provides additional information on this drug. My only quibble with it is that, in my case, the drug has proven to be extremely effective in addressing my condition.