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!
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.
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.
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?
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.
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.
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.
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.
worry-less-journey 