Big Pharma

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.

 

 

Sunday Reflection - The Body of Christ

A bishop told one of his priests that he was sending him to be Pastor of a really difficult parish – so difficult, in fact, that it had become known among the priests as “the graveyard of Pastors.”    “I’ve been advised to close the place,” the bishop said.  “But I’d like to make one last attempt.  I’m asking you to go there and see what you can do.”         

            The priest had not been in his assignment a month when he found that everything he had heard about the parish was true.  Attendance at Sunday Masses was pathetic.  The only thing parishioners seemed to be good at was malicious gossip, backbiting, and criticism.     So, one Sunday the Pastor announced: “I have some bad news for you.  I hate to tell you, but this parish is dead.  So, at 10 o’clock next Sunday we’re going to celebrate a funeral Mass for this parish.”  

          In the days following news of this sensational announcement spread like wildfire.  At 10 o’clock the following Sunday the church was full.  There were funeral wreaths up front, and an open coffin.  The Pastor announced that before beginning the Mass, he wanted everyone to come forward to pay their respects to the deceased.  As people filed by, they got a shock.  The coffin was empty – save for a large mirror.  Each person looking in at the deceased saw a picture of himself or herself. 

          My brothers and sisters, I have told you that story – and of course it is just a story – because St. Paul is saying something very similar in our second reading.  “You are Christ’s body,” he writes, “and individually parts of it.”  And Paul goes on to say that though Christ’s body has many different parts, each with its own function, there are no unimportant parts.  

          Where did Paul get this idea that the Church is Christ’s body?  He got it in the event which changed his life: Paul’s dramatic encounter with the risen Lord on the road to Damascus.  That encounter was so important to Paul that it is recounted three times over in the Acts of the Apostles.  We find it first in chapter 9.  You know the story.  “As Saul [his Jewish name, for he not yet received his Christian name of Paul in baptism] approached Damascus, a light from the sky suddenly flashed about him.  He fell to the ground and at the same time heard a voice saying, ‘Saul, Saul, why do you persecute me?’  ‘Who are you, sir?’ he asked.  The voice answered, ‘I am Jesus whom you are persecuting.’”     Note Jesus’ question: not, “Why are you persecuting my followers, or my Church?”, but “Why do you persecute me?”  Paul’s insight, that Jesus’ followers, born into the Church by baptism, comprise Christ’s body,came straight from that question, and that encounter. 

          But what do we really mean when we say that the Church is Christ’s body?  No one has stated it better than the sixteenth century Spanish Carmelite, St. Teresa of Avila.  This is what she said: Christ has no body now on earth but yours; no hands but yours; no feet but yours. Yours are the eyes through which he is to go about doing good; yours are the hands with which he is to bless people now. 

          My friends, do we really believe that?  Do we believe that the Church is not just the clergy and other religious professionals, but all of us?  Many Catholics today do believe that.  But not all.  Old habits die hard.  Some of our ways of speaking betray a different view.  We hear people saying, for instance: “Why doesn’t the Church do something” about this or that problem?  Or when a young man is ordained a priest, people say: “He went into the Church.”  In both of those examples the assumption is that the Church is synonymous with the clergy — and today perhaps other religious professionals who work with the clergy.           

            That older view of the Church sees the laity as something like customers in a filling station.  If they are good customers, they drop into the station weekly to fill up their tanks.  When they need a tune-up they may go to confession.  Otherwise the customers are content to leave the running of the station to others.  There are still Catholics who think that way, and act that way.  They like that model of the Church.  It is easier, and less bother.           

            I called that the older view of the Church.  It is not the oldest view, however, and certainly not the original view.  The original view is the one set forth by St. Paul in our second reading.  The Church is Christ’s body.  That means that the Church is all of us.  We don’t just go to church.  We are the Church.  If the Church is truly Christ’s body, and not just a spiritual service station, then there can be no passive customers.  We are all called to be active messengers of Christ’s mercy, healing, and liberating love.             

            We can take this a step farther.  If baptism has made us active members of Christ’s body, on whom he depends to continue his work in the world, then our relationship with Jesus Christ, who is the head of the body, cannot be a merely one-to-one, private affair.  As members of Christ’s body we are related not merely to Christ our head, but to all the other members of his body as well.  As Paul says in our second reading: “If one part [of the body] suffers, all parts suffer with it; if one part is honored, all the parts share its joy.”          

              So often we think of our religion as a striving after high and distant ideals which constantly elude us.  That is wrong!  Being a follower of Jesus Christ never means trying to become something we are not.  It means living up to what, through baptism, we already are.  In baptism we were born into the great family of God called the Catholic Church.  We became, in Paul’s language, members of Christ’s body.  None of the members is unimportant.  None is passive.         

            The differences between the members of Christ’s body are differences of function.  Paul lists some of these functions at the end of our second reading: apostles, prophets, teachers, the doers of “mighty deeds,” healers, administrators.  All are equally important.  And all of us, as members of Christ’s body are joined in intimate fellowship with one another.  Together we all have an intimate relationship with the head of the body: Jesus Christ, our Savior and our Lord – but also our brother, our lover, our best friend.

Sunday Reflection - From Paranoia to Metanoia

Gathering on this Third Sunday of the Advent Season with its traditional name of “Gaudete” or “Rejoicing” Sunday, we hear that familiar theme spoken of not only in our first reading from the Prophet Zephaniah, urging us to ‘shout for joy,’ but more importantly in our second reading from Paul’s letter to the Philippians – ‘Rejoice in the Lord always, I shall say it again, rejoice.’  Well folks, no matter how many times we may say that word these days it is not going to magically dispel the understandable fear and paranoia that seems to be gripping our world and our society.  The specter of terrorist attacks the world over, like the most recent attack that shattered pre-Christmas festivities in the Strasbourg Christmas market, haunts so many of us since 9/11.  

That term, paranoia, is defined as ‘a thought process heavily influenced by anxiety or fear, often to the point of irrationality and delusion. The concern that grips our land is far from irrational.  Ever since the defining terrorist attacks that occurred on 9/11 in our country, it is understandable that the specter of apprehension in the face of today’s present menace of fundamentalist jihadi terrorists is a present reality.  Any responsible nation concerned with the security and common good of its citizens does well to be appropriately responsive to such real threats.  This fear, however, becomes irrational and delusional – indeed paranoid – a word from the Greek that literally means, ‘out of one’s mind’ – when it becomes unhinged from reality.  When it becomes an obsessional reality fed by the often opportunistic ravings of the irresponsible.   

The Advent Season for us as Christians is a clarion call for each of us to replace paranoia with metanoia– the beautiful Greek term that means the conversion of our minds and hearts to the one who ultimately can calm all our fears with the transforming power of His hope and His promise.   

It was this reality that was at the heart of the preaching of the last and greatest of the Israelite prophets, John the Baptist.  Paranoia invariably has the tendency of causing those who are victimized by its irrationality to go inward – destructive voices are heard in one’s mind, everyone is out to get us, fear surrounds us at every corner.  Whereas, the message of metanoiaor conversion that John preached is a challenge to his hearers of every age to go out of oneself in order to truly find the meaning that gives all life value.  

“Whoever has two cloaks

should share with the person who has none.

And whoever has food should do likewise.” 

Metanoia – or a change of heart, is living a life that in many respects is counter to the exultation of the self and the narcissism that surrounds us daily.  Metanoia living is quite simply the essence of the Christian way of life that tells us that life will only truly be found if we are willing to give our lives away in service to others. 

The most profound example of this kind of living, will of course be found and celebrated in the mystery of the Incarnation for which these days of Advent prepare us.  For in the mystery of Christmas, the God who lives in unapproachable light, embraces our human nature, becomes like us in all things but sin, so that fear might be transformed by hope, loneliness by divine communion, death by the gift of eternal life in his unfailing and merciful love.  

As the great feast of Christmas approaches, may the gift and meaning of this feast truly touch the minds and hearts of so many who continue to live in the shadows of fear, so that its grace may indeed free and empower us with its hope and promise.