I recently heard about a child who suffers with Retinitis Pigementosa. This is a problem that will cause blindness. A drug company has developed a drug that actually cures the problem. The cost of the drug was the question. Below is a statement about the cost.
A US drugmaker offers to cure rare blindness for $850,000. Spark Therapeutics’ Luxturna will cost $850,000 for a one-time treatment. The gene therapy treats a rare, inherited retinal disease that can lead to blindness.Jan 3, 2018 https://www.cnbc.com/2018/01/03/spark-therapeutics-luxturna-gene-therapy-will-cost-about-850000.html
The child has received the drug. I am not sure if he received it as a test or if somehow it was paid for. Already his vision is improving. The news person was interviewing the person who I think is the owner/ceo? He was asked how the company set the price on the drug. The answer was so outrageous that I was stunned to hear it.
“We set the drug cost based on the value of curing blindness.”
I have never heard such a thing. I have worked for years in the medical field and certainly realize that drug costs are outrageous…think about the controversy about insulin…but this is beyond amazing. I cannot believe that the head of a drug company would have the nerve to make that statement. Imagine if all drugs were priced accordingly.
Usually the drug companies explain their high prices by talking about the years spent in research and development. Overdone maybe, but a least reasonable idea. But to actually state on national TV that the drug is based on the value of a cure was incredible. Companies usually base the cost of a product on the cost of manufacture plus profit but that is all changing. Now we seem to be setting prices based on what the market will bear. This may be fine for TVs, computers etc. but this is a life saving drug. I hope the scientist who discovered this drug was paid well and feels good about his participation in this fiasco.
The news person didn’t even seem phased by that answer.
Where are we headed? The moral sense of this world has disappeared. Making a huge profit is more important that making life worth living. I don’t recognize the world anymore!
Today there was more information about the plane crash yesterday. It seems that the crew were to fly the plane to Arizona where it was to be decommissioned. It was 60 years old and ready to be retired. How sad that after all those years and all those missions completed it had to fall out of the sky on its last trip and take the crew with it.
Life can be strange. So many poignant things happen. So much of it is called a coincidence. Someone misses a plane and the plane goes down and they don ‘t die. You see a car accident right in front of you and your car is spared. Sometimes when these things happen people have survivors guilt. It is easy to feel bad that someone died in your place. There are no answers to why these things happen. I wish that our questions could be answered and we could see the logic but that doesn’t happen.
This is the thing that turns many people away from any kind of faith. How can we explain why bad things happen. If God is so good and caring why do children die of cancer? Why does it seem that the best people die and the evil ones are still around. Why do some people suffer with mental illness, anxiety and depression? Why are others so lucky as to be tragedy free?
How I wish I knew. How I wish I could come up with an explanation that would satisfy everyone but I can’t. I can only say that I believe there is good in the world. I believe that the good can prevail. I believe that understanding why is beyond the ability of my mind to conceive. I choose to accept a loving and caring God.
What do you believe?
For those of you who have never read Madeleine L’Engle’s books I am sorry. She wrote a great many: fiction, fantasy, theology, biography etc. I think I have read everything she wrote and had to get some out of print by searching. Today I went to see the film “A Wrinkle in Time” and they didn’t do a bad job with it although it’s hard to reproduce the amount of science (mostly physics) that she incorporated. The average movie viewer wouldn’t get it.
The graphics were absolutely beautiful and although I don’t usually do 3D it just happened to be at the time that I wanted and I am glad I did. It made the graphics gorgeous. L’Engle was a deeply theological person and so much of that is subtly in her fiction books. It is the kind of thing that makes me say WOW and AHA! There was some of that in the film but I definitely recommend reading the books. You may think they are for children but not so. Like Lewis’ Chronicles of Narnia there is much to learn and much joy in reading. I have read this series several times as a adult but (they came out after my childhood) but I am going to pull them out again.
I only caught one AHA! statement in the film. There probably were more but I couldn’t catch them fast enough. One of the characters said “It is okay to fear the answers but you can’t avoid them.”
When the book was published originally many fundamental groups banned them because the said their were”witches” in them. There is a Mrs. Which, Mrs. Who and Mrs. Whatsit who could be equated as witch like characters.
For me her Wrinkle in Time, A Wind in the Door, A Swiftly Tilting Planet, and An Acceptable Time are worth adding to Lewis and Tolkien. Hers are more like Lewis but she could have joined that writers circle.
Sometimes the sadness of the world can be overwhelming. It is not even necessary to mention all the things that are wrong. There is so much grief and pain. When I was younger I thought that the world would just get better and better….that each generation would have a better life but I know that is not the case. Life continues….do people change? Are we any better or any worse than people who came before us? Is the violence and hatred worse? Sometimes is seems so but that may just be because communication lets us hear more. Since my first degree is in history I know that there was great evil in the past and horrible violence. This makes me believe that nothing has changed. We humans have not changed. We have learned nothing from the past.
God must weep at our inability to learn. He sent Christ to show us how we should live. What more could he do? A living example right in front of us and yet here we are. When will we learn?
We have to keep following his example. Not words that were written though they help…..but his actions. His love. His healing. His acceptance of everyone. His forgiveness. This is what we have to do. Every day, every minute, every second.
Live like him, live for him.
It is impossible to understand what is happening in the USA. Now there has been a shooting in rural Texas….a small town of about 400 people. It seems that the shooter was not part of the town but came in from outside. There is not enough known to say much about this except that I am weeping for my country. The violence is so pervasive that it seems that no one can escape it. It is hard to understand why this is almost an every day occurrence.
Having grown up at a time when this kind of violence was unheard of it is hard to take a look over the years to see what has changed. Apparently there was a scene in the recent movie “The Kingsmen” where someone went into a church and shot people. I have wondered before if seeing violence everywhere has dulled us to it.
Who can tell where all this will lead. Why is there so much hatred? Is there nothing that we can do? I keep remembering that I am only one but I am one. I will continue to talk about seeking peace. I will speak out about violence. I will speak out about my faith. I am sure that God weeps along with us and will grant those of us who speak out the strength to continue to do so. I do think that each of us matters and somehow we will be heard.
I weep for my country and all those who have lost a loved one in all the recent violence. God help us!
I am reading a book by Barbara Brown Taylor called Walking in the Dark. The book has opened many thoughts for me about light and dark. We do see them as opposites and equate them with good and bad. We have dark thoughts, saw a dark movie etc. Darkness holds scary things. Yet, as a child, some of my favorite memories are of a group of adults sitting on our back patio talking late into the night. There was no light. The stars were out. It was hot summer and outside was cooler and usually had some breeze. This time felt so special for me. I was usually not allowed up late so this was stolen time. The soothing voices of the adults would lull me to sleep. For me, the dark held no danger.
Of course later in life I became aware of how light and dark are used. The Bible has references such as John 1:5 The light shines in the darkness, and the darkness did not overcome it. There are many others. Distance from God is often called the dark night of the soul.
Darkness in the cities is not really dark and there are dangers that make the night frightening. Our current world is more scary at night. We can’t see what lurks there.We also see ourselves as having dark places within us. Places that hold anxiety and depression. We want to bring light to those places to drive away the darkness. I see this as a malign kind of darkness filled with clouds of hate and evil. I wish we had a different name for those. If we did we could distinguish between that darkness and the gentle dark that allows us to rest.
We have lost our connection to the night as a peaceful time.We need it physically to maintain the circadian rhythm of our bodies. Most of us rest easier in the dark.
How enchanting is it to walk in the dark….away from disrupting light….. and truly look at the night sky. There is something magical that is not there in the daylight. Watching the sunset over the ocean and waiting for the stars to come out is ethereal.
We need to separate the malevolent darkness from the healing peaceful dark.
Today I was talking with my daughter and granddaughter, They reminded me that the dangers are not just from the outside but from the inside as well.
Not only is the world a dangerous place but also our own country. There is so much anger….so much hatred. Again there is no middle ground. The sad part is that this is not just political but can also apply to some religious groups There are extremists on both sides. Recently Hulu has aired the program The Handmaiden. I read the book when it first came out and was struck by the concept it suggested. I thought how realistic the idea is.
Muslims are not the only ones who can have extremists. Christians are not free of guilt. We have had crusades against Muslim countries. We perpetrated evil against our own people during the inquisition in Europe.
There are extremist groups in our country today who believe that they hold all that answers and anyone else is wrong.
We need the moderates back. We need those who can hold a discussion and see the ideas of the other person and allow them to hold their own views.
In exploring the concept of anxiety itself I have found that spending time in silence allows thoughts to arise. These thoughts can be good, bad, or neutral. Silence is needed in order to think. Silence allows the questioning of our own ideas. Sitting quietly is good for the soul. Adding meditation to the silence encourages peace and calm. It seems the whole world needs this.
This week the news (as usual) is alarming. I have been thinking about those Islamic radicals who are living in so many western style countries and I have been concerned about what I am beginning to see as a pattern. I am someone who tends to believe the best of people and I don’t like having to think otherwise. When I consider how the Nazi regime managed to change the moral compass of a nation it is easy to see that it could be done again. For me, it brings to mind a poem by a poet know for his limericks. That poet is Ogden Nash. Many of his poems are lighthearted and just fun but there are quite a few that force us to confront uncomfortable issues. This poem was written in 1938 just before the war. The insight it provides about how to change ideas and ethics is frightening. When I see radical Muslims demanding Sharia Law and eroding the legal systems of my world I can’t not be scared. Eroding away inch by inch is easier than going to war. Here is the poem for your contemplation.
The Japanese (1938)
How courteous is the Japanese;
He always says, “Excuse it, please.”
He climbs into his neighbor’s garden,
And smiles, and says, “I beg your pardon”;
He bows and grins a friendly grin,
And calls his hungry family in;
He grins, and bows a friendly bow;
“So sorry, this my garden now.”
Except for the above anxiety is momentarily at rest. The trigger has (for now) sent it away. That doesn’t mean that it won’t arise another time. I am struggling to continue my plans for change. When the fear is past it is so easy to slip back into complacency. For those of us who have God in our lives it is typical to let our connection fade when it is not needed. Discipline is so difficult. I will continue to persevere no matter how difficult. I am determined not to let myself back up now.