Wasted

"Government failure to play a central planning and coordinating role is the main reason why stem cell therapies have not lead to curing disease and this failure will cost you money now and more in the future."

Today I am starting with a bold statement. Just making a statement like this with no explanation will get you a reputation for being a crackpot. But sit with someone at their kitchen table and talk about the reasons and you'll get a lot of understanding and maybe even some anger. So today, pull up a chair, put out the cups and pour the coffee. Let's talk about the failure to cure disease.

Let's start with a little clarification. The point of today's post is not to criticize stem cell research companies for putting profits ahead of a cure. This would be like criticizing cats for eating mice. But I will be clear; profits are interfering in the search for a cure. Let's face it, the company that cures spinal cord injury or diabetes will make tremendous profits, therefore there is no motivation for them to share research. This causes duplication with three, four, or four hundred companies doing the same research because there is no benefit for private companies to coordinate or share their work. This is a waste of not only money but a waste of human resources and human potential.

I'll give a clear example so that people don't just think I'm making this up. Associated Press reported on 11 June 2010 that, "In an unusual step, a dozen competing drug companies have agreed to share data on thousands of Alzheimer's patients in hopes that the extra information will spark new ideas for treatments...it's the kind of collaboration that does represent a major shift in thinking about how to accelerate drug development…It is led by the Critical Path Institute, a nonprofit partnership with the FDA that aims to speed discovery of new drugs."

Now let's look at three most important words in this article. You'll find them bolded in the story.

Unusual: This is not something that regularly happens with medical research companies, thus the use of the adjective 'unusual'. It is not the norm in stem cell research either. So why did this happen? It happened because past efforts by private companies have failed. That's not me saying that these companies have failed, it's the Associated Press.

Accelerate: To speed up. To quicken. This happens because when you have collaboration you share data and don't spend money (in most cases tax dollars) repeating the same failed experiments. Again, this is not me saying that collaboration will accelerate research, it's the US Food and Drug Administration.

Nonprofit: No profits. Of course it has to be nonprofit. When profits are in the way no one will cooperate. That's not because profits are inherently bad, but they do not lead to cooperation. The kind of cooperation that private companies are now forced into after years of failure due to non-cooperation.

Other than being a waste of human resources, it would be OK if it were only their own money they were using to fund the research, but it's NOT. Governments all over the world are using your money to fund private ventures whose goal is to make profits while trying to develop stem cell therapies, not very free enterprise sounding to me.

Let's look at the the three billion dollar California Stem Cell fund example. Now before I start getting comments telling me that this fund flies in the face of my logic that government is not playing a big enough roll, let me make three points. Good things are coming out of this fund AND it is a bureaucratic nightmare AND an inefficient use of tax dollars because it's not enough money so it is actually a waste of money (trying buying a one dollar bottle of pop for 25 cents and you'll see what I'm talking about. The clerk will take your quarter if you insist but he won't give you the pop).


Now let me tell you why it's not enough. It's not enough because it's ONLY three billion dollars and even after six years the fund has only put out one billion dollars in funding. Yes, ONLY one billion (the remaining two billion is set to take seven more years to dole out). 


So you can see how small one billion dollars is, I'll give you a very interesting fact.


Pressure sores. People with spinal cord injuries get them and they can be not only uncomfortable but dangerous. The cost of treating just this one simple secondary problem related to spinal cord injury is 1.2 billion dollars per year in the US alone. So that's how small one billion dollars in stem cell funding is.


Remember, spinal cord injury is just one potential health issue that could be cured using stem cell therapies, there are about seventy other conditions. Add up the costs of treating these diseases and you'll see that a CURE is much, much cheaper than care. The failure to properly fund stem cell research is not free, it's costing you money already and will continue to cost you money in the future.


Also, the bureaucracy needed to control the funding is expensive, the California fund alone will spend 1.25 million dollars (not including staff costs) in creating a computer program to monitor and track the funding requests (taking money away from actual stem cell research, and it is time consuming. Basically you have a bunch of public and private (again, your money going to fund private profits) research facilities and they make requests. These requests need to be checked and rechecked. This is one main reason why it will take thirteen years to spend three billion dollars in grants that are desperately needed right now.


And California is not the only place doing it. Maryland, New Jersey, and New York, plus the US federal government all have their own funds with their own bureaucracy to administer the fund. Then repeat this to include the top five or six stem cell research countries and you have MASSIVE WASTE! This is money that is being used solely to administer stem cell research money. Money that will never create a new eye, or cure multiple sclerosis.

We need to both applaud California and other American states for their gumption in funding stem cells while the Bush White House refused funds, and, for the good of everyone, we must criticize the inefficient and wasteful way it's being done.


But I can criticize all I want, and if I don't start putting forward some alternatives I'll get tagged as a real crackpot. But today's blog is getting way too long, so I'll give you a break and invite myself around for coffee again during the next post about an efficient, alternative way to finance, administer, and plan stem cell research.


PS. Just a fun little exercise. I found the Alzheimer's information by using a news feed, but I get loads of articles everyday that I go through. Since I wanted to use the information for today's post and couldn't remember the name of the article, I did a simple search to try to find it again. Try it out.
1. Google: "alzheimer's companies share research" - you'll find the story I linked to and a bunch of others.
2. Google: "stem cell companies share research". I was hoping to find similar stories to the Alzheimer's story with companies sharing their data. At first I didn't understand the search results as I got a bunch of financial news related to stem cells. See if you know why? It gives a new meaning to "share and share alike".

That's expensive.

I'm trying out a new wheelchair. I've actually tried out a lot of different wheelchairs. People probably think that my new hobby is trying out wheelchairs.

150,000YEN=$1500USD

When I first got a new non-hospital type wheelchair to test drive my family and friends were really impressed by how sporty it looked. But by the fifth test model I'm sure they were thinking, "How's that different from the first, second, or fourth one?" Well, when you have to sit in a chair from morning to night, you want the chair to be perfect, because you have to sit, sit, sit, sit. Until I found the chair that stands.

Those in the spinal cord injury world may already know what I'm talking about, but for those of you that don't I'm providing a few links: Levo Standing Wheelchair, Hero Standing Wheelchair, and if you google 'standing wheelchair' you'll see others.

450,000YEN=4,500USD

Standing up is not only cool, but it also has a lot of health benefits like stemming muscle loss and improving kidney and bladder function. This time, people didn't look bored with my newest test model. I got a lot of positive comments but the comment that stuck with me most was, "That looks expensive."

"Well, of course it's expensive. It's high tech," I said, "and it makes me stand up." And it is expensive, about 450,000YEN (about 4,500USD) and it does make me stand up, but I wasn't really convinced about my own statement. So since I have a lot of time, I did a little rethinking about this 'high tech' wheelchair.

You've all seen a wheelchair, so let's be realistic; depending on the all the bells and whistles the frame is no more high tech than a bicycle, and you wouldn't pay $4500 for a bicycle. The 'high tech' standing mechanism is a hydraulic lift (which have been around for a few hundred years).

Of course we all know the basic economics answer to this question. One unit is expensive because there is no volume of sales. Answer number one; correct!

Answer number two is more complex. We all know about another supposed theory of prices, the "what-the-market-can-bare" theory, but is $4500 really "what-the-market-can-bare"? In the case of wheelchairs it seems to be "what-the-insurance-providers-will-tolerate". In many cases, private or public insurance companies do help pay the massively high costs for these low-tech machines, so the inflated cost ends up subsidized by the premiums of the non-wheelchair using community.

In cases where a public or private insurance will not help pay the costs of the chair, the "what-the-market-can-bare" price system completely collapses because with a 63% unemployment rate (USA) the non-insured cannot afford the price, making the market smaller and again pushing up the price.

But this blog is about stem cells not wheelchairs. But before I get criticized for changing the focus of this blog, I'd like to first discuss the ACME Cooking Company of France for a really quick economics lesson.

John Q asked ACME to come up with a new gastronomical delicacy. He was so desperate to satisfy his palette that he agreed to not only pay for the costs of any ingredients that the company would need to create the new dish (whether used or not in the final creation) but to pay for the education of all ACME's chefs and other employees. Most importantly, it was John Q gave money to the company so that they could hire and pay for some big name (and smaller name) chefs.


After many years the ACME company had finished the creation and John Q was ready to eat. When he had heard that the new dish was in it's completion stage he purposely began to starve himself so he could truly enjoy this delicacy. Finally, he seated himself at a fine table decked out on his Sunday best. The president of the ACME company would serve the dinner himself on the fanciest china with diamond studded silverware. As the president approached carrying a silver-lidded tray John Q could hardly contain himself.


What came next truly stopped his heart. As the president uncovered the tray and the contents were unveiled to him he saw that the only thing that was being presented was an enormous bill. He knew that he would have to pay something, but having funded the whole project, he felt that he wouldn't have to pay THIS much. He couldn't afford this and when he spoke up to ask about the exorbitant price he was shocked what he heard. 


The ACME president informed John that since it was he himself who took the risk to create this food extravaganza the price was more than fair. 


John retorted, "I paid for this already. It was me who kept you all working and paid in the years before you invented anything." The ACME president now stunned John. He simply left. John was left with an empty stomach and emptier pockets.


Now a really quick poll. How many think that John got ripped off?

Maybe there is no need to go on to stem cell research in today's blog. Don't want to hit anyone over the head.

Such great news that it will sicken you

"How then were your eyes opened?" they asked. He replied, "The man they call Jesus made some mud and put it on my eyes. He told me to go to Siloam and wash. So I went and washed, and then I could see."

People who are sick pray for miracles. Well, a miracle of sorts has taken place in Italy even though one of the study leaders,  Graziella Pellegrini of the University of Modena's Center for Regenerative Medicine in Italy, brushed it off. "Some said it was a miracle," reported Pelligrini, "It was not a miracle. It was simply a technique."


Well, she's right. It was a medical technique, but to the 82 out of 107 people, including one man who has been blind for sixty years, who had their sight fully restored and 14 others who they are calling a partial success, it was nothing short of miraculous.


Imagine not been able to see for even just one hour and then a simple operation restores your sight. What would you call it. Some believe and some don't, but before this procedure was made public, you could only pray for something like this. How about now?


When I first read this story it was billed as a 'breakthrough' so my first instinct was to see when this all occurred (actually, my first instinct was to think that it was another story about rats - I almost fell out of my chair when I realized it was about people). Was it today? Yesterday? Maybe even last week? My impression of a breakthrough is something that has just happened, especially when I see it written in the newspaper as current news.


This study or experiment, or whatever you wish to call it, was conducted between 1998 and 2007. First I though that the first nine years were just a testing phase. No, as I went on to read the rest of the article it shows very clearly that one person has had his sight back for over ten years. Imagine seeing a NEWSpaper headline mentioning the 'atomic bomb breakthrough' just to find out that it's a piece about 1945.


So why are there two blind people in the hospital here with me? They better keep praying as it doesn't appear that they'll be getting their new corneas any time in the near future. 


Then I noticed something else. The Telegraph article has a 'related articles' box and I saw another article, 'Blind could be cured by stem cells grown in contact lenses'. Why did the paper have two separate articles about the same thing? Well, it's not the same story. Just basically the same procedure, but carried out in Australia in 2009. I started to get a sick feeling in my stomach. 


Why are scientists in Australia and Italy and the Telegraph and other newspapers all talking about breakthroughs. It appears that they did it a long time ago, especially from the perspective of someone who is blind right now. They have healed the blind, but the two blind guys in my hospital are probably wearing out their rosary beads, because they've not heard of this.


I then thought that if it's not yet available  it must be a complicated operation. 'Not so' is the answer from the Australian researchers who call it "totally simple and cheap." They go on about how beautifully simple this procedure is. "It requires no major operation...If you're going to be treating these sorts of diseases in Third World countries all you need is the surgeon and a lab for cell culture. You don't need any fancy equipment."


Where are they doing this procedure? If they can do it in the third world, why aren't they doing it in the first, second or one hundredth world yet?


Let's hope that this isn't scientific research for the sake of scientific research which gets left at three people in Australia and one hundred and six people in Italy.


I will write more after I write to some organizations in both Italy and Australia to find the status of these therapies or research and will therefore save some of my judgement for later, but I must admit that my sick stomach feeling isn't going away.


PS. Thank you to all of you who asked about me not writing for the past week or so. My computer crashed and I was without the internet for about one week. Worse than that, I lost a lot of my research for future stories, but I'm slowly getting back to speed and should have one or two posts per week from now on.

Greater than the might of atoms magnified a thousand fold

Maybe you know this song?
One line is the same as the title of this post.
Do you know it yet?

It's sung to the tune of "Glory, Glory, Hallelujah" (Battle Hymn of the Republic). Know it yet?

One of the verses goes like this:
In our hands we hold a power greater than their hoarded gold,
Greater than the might of atoms magnified a thousand fold.
We can bring to earth a new world from the ashes of the old,
For the union makes us strong.
Do you know it yet?

That's right. It's "Solidarity Forever".

Now I've really done it. You were all waiting for me to slip in something about unions, and now I have. Not only have I talked about unions, but I did it by talking about that corny song. That old cliche. Don't I know yet that people will be turned off by things like "Solidarity Forever"?

My answer to these possible criticisms is - What does that have to do with anything?
It reminds me of a story that I was told when I first joined my union of which I am now general secretary.

"There was an organizing drive at a school and the union organizers were trying to persuade the head teacher to join knowing that his membership would encourage others as he was a well respected teacher. The concern was that the head teacher was 'anti-union'. Another teacher, also thinking that the head teacher was anti union and trying to curry favour with him piped up, 'I don't like unions'. To which the head teacher responded, 'What does that have to do with anything?' "

This one line, "What does that have to do with anything?" sums up my feelings exactly. Some people are against unions' ideas, but very few people are against the idea of unions. I'm writing about unions because it's what I know and if I didn't, people would say; Oh! He's not even thinking about unions now that he's paralyzed.

Well, I'm thinking even more about unions now that I'm paralyzed, because when you strip away any biases (good or bad) about unions that you may have and get down to the basic question of what a union is - a group of people who share a common interest banding together to make sure that their cause, their issue, or their needs are not forgotten - most people see the logic in it. So did the head teacher, and he joined the union despite 'not liking unions'.

And that's what solidarity is; a group of people who have a common interest banding to make sure their cause, their issue, or their needs are not forgotten. It's not rocket science or even radical. It's simply the basis for all human society. People together.

Well, let's see if  getting people from many different 'disease communities' together is easy or not, my feeling is that if it's 'organized' properly and people feel that they can make a difference, then people will react. But people who are sick or paralyzed are a minority, so we need the solidarity of others.

But how can someone who doesn't have multiple sclerosis, or diabetes, or a spinal cord injury, or any other disease that stem cells may cure show solidarity with those of us who do. There is no sense in me saying that these things may also happen to you. No one who is healthy believes that they'll get sick. If you would have told me last year that I would be in the hospital, paralyzed, for almost a year, I would have cracked open a beer, popped a cigarette into my mouth, and told you that you were nuts.


Felipe Zegarra, a Peruvian diocesan priest and professor of theology at the Catholic University of Peru, said it beautifully, "Solidarity is a good alternative for the overused word compassion", and maybe for the underused word love, too.


In the weeks to come I will ask you to show solidarity with me and with the others that you know who are sick. I ask even those of you who "don't like unions" (Wink!). The first thing I will ask you to do this week is simple.


On the left hand side of this blog is a button called "follow". If you click on it you can sign up to get this blog regularly. Also signing up will leave your picture or shadow on the site and will let people know that you are showing "solidarity" with me or someone else that you know, including yourself, who is suffering from one of the many diseases that could be cured with stem cells.


Don't worry, I'm not doing this to increase traffic and then charge for advertising. I'm doing this so that if anyone who is sick or desperate because a person they love is sick, then they will see your face and know that they are not alone. The worst part about being sick is feeling alone and with one click you can help someone, even if it's just me, to feel not alone.


This solidarity/compassion/love is the first step in building something 'greater than the might of atoms magnified a thousand fold' and maybe someday beating diseases that you or a loved one have.


P.S. I hope that I don't have to explain to anyone what today's post has to do with the atom bomb. Wink! Wink! (I really have to learn how to use the brackets and periods to make those cool wink signs).


P.S.S. Also, in the original version the word 'atom' is not used. The original, written in 1915 used the word armies. But look at that. Only 30 years after the song was written an atom bomb had already been produced.