Googling away the cure

Today I typed "stem cell treatment spinal cord injury" into Google and got the pink results that I've pasted to the right.

They came at the very top of the 'search results' and they are ads that people paid to have listed. Wow, the researchers can hang up their lab coats because the cure is already here.

On offer from the pink results we have XCell telling us about their "first successes for spinal cord treatment", and LikeCell promising "obvious improvement in 5 weeks". Now some people know why these are not the cures we're looking for but many don't.

People with spinal cord injuries who've been around a bit know why these treatments are not scientifically based, but newly spinal cord injured people who are desperately seeking a cure, and my non-spinal cord injured readers may not know why. Not to bore you, but let me tell you how something becomes a treatment.

Stick with me just a little. I'll give you just a small taste of the process.

First of all when new therapies or things that could lead to new therapies are developed, they are published in peer reviewed journals so that other scientists can try to reproduce them to see if the findings are the same.

They may even be tried in animal models. In stem cell therapies for spinal cord injuries, they've tried it on mice, monkeys, and I even heard about a donkey. Again, these findings are published in peer reviewed journals so that their peers can try to replicate the results.

After some time, when the scientists think that they may benefit humans, an application is made to a government regulatory agency for permission to start phases I to IV of human trials. Now before I bore you about each phase, I'll let you decide whether you want to know about each phase. Go to Wikipedia for a relatively good explanation.

Both examples above haven't done clinical trials for spinal cord injury. Instead they use testimonials. Yes, just like product testimonials that you may see on TV commercial. Patient A can now stand. Patient B has improved sensation in his belly button area. Patient C can get an erection and control his bladder. And so on...

There are no control groups. There is no overall data about the efficacy, and in other examples I have seen, we don't even know  exactly what they are using, because they do not let anyone check. Basically people pay to be experimented on. Of course they always write in a disclaimer about it not working on everyone, even though they never tell us what percentage it did work on.

I often wonder if Google would let me run an ad for my 'turning rocks to gold' process. Send me ten kilograms of rocks and I'll send you ten kilograms of gold for just $100. Of course, I would write my disclaimer and I wouldn't let anyone actually see the process. If I sold enough of these, I could fund a lot of real research for spinal cord injury.

On a forum that I often visit which deals with a cure for spinal cord injury called CareCure these so called therapies are hotly debated, but I've ever only seen arguments about bad science, I think there is another thing that needs to be raised, and that's the fact that people PAY for these treatments.

What would happen if one of the non-clinically tested cures were true? Instead of showing us years of data from clinical trials, they show us one person after another walking. What happens then? Would you pay?

I'd like to say no (but I don't know what I'd do). One thing that I am certain of is that if people start paying it will put an end to further government funded research, will guarantee that governments DON'T cover it under public health insurance, and will create a sub class of spinal cord injured people who are poor. This is probably the main point why we shouldn't encourage paying out of pocket for treatments (especially unproven ones).

So now you think I'm crazy? What proof do I have about something like this? Am I going to give you a conspiracy theory now?

No, not crazy, I don't have any conspiracy theories, and I will give you an example that's probably going on in your own country as we speak. It's called ProjectWalk it's an exercise/rehabilitation programme that while not a cure by any means, has proven to be quite effective for spinal cord injury.

It was started in America, but I won't use the example of America since, aside from all the talk of public health insurance, there is no public health insurance in America, and even Mr Obama's plan when fully implemented will not be public health insurance.

ProjectWalk or similar programmes can also be found in Canada, Australia, England, Japan, and Norway; all countries with universal public health insurance, but as far as I can see, despite the great results, it's not covered in any of these countries. People, who can afford it, pay out of pocket, those who can't, sit in their chairs.

No, I'm not blaming any of these ProjectWalks in any of these countries. In fact they take donations to try to keep the costs down, but at $70 an hour in Canada, it's beyond the reach of most. But even though it's a good programme, governments take the position that it's only for those who can afford it.

So remember, the debate over so called 'stem cell tourism' is not only a matter of good versus bad science, it's also a matter of good versus bad public policy. Part of any campaign for a cure for spinal cord injury, must include demands that it is never based on the ability to pay.

Liberty. Equality. Fraternity

Welcome to the French language version of StemCells&AtomBombs.

To tell the truth, I had a lot of different about the post to launch this language version.

I wanted to tell you about the French Atom Bomb project, and how if France could make such a terrible weapon French technology can cure paralysis.

I wanted to tell you about French efforts to cure many different diseases using stem cells.

Like always, whenever I start a post, I search and search and search the internet looking for good ideas. I stumbled up the French Revolution and it's call for liberty, equality, and fraternity. I knew that this is what I wanted to write about.

The liberty: To be free from the confines of my chair. For others to be liberated from disease.

The equality: To fight to make sure that when we get stem cell cures they are made available to all, regardless of their ability to pay.

The fraternity: The means to win the cure. All of us together, making sure that we are not forgotten.

Welcome.

Good news. Good reporting.

Read the full story

I always like to read about the wonder of stem cells. Of course I have a very big interest in the use of stem cells to cure paralysis and this blog often focuses on that, but today, I'm happy to be able to focus on a great piece of stem cell news to treat another condition.

This morning I opened my Daily Yomiuri newspaper to find wonderful news for women who have undergone masectomies. The news is that several universities and medical institutions in Japan will create a new institute in April to help victims of breast cancer regenerate their breast tissue using their own stem cells.

Currently, breast reconstruction is usally done with silicon which poses a risk of infection, or fat implants which offers only a temporary solution as the fat is reabsorbed back into the body.


This new treatment proposes to use stem cells from the patients own abdominal fat, culture them, and then re-inject them into the breast area.

Even better news is that it appears that this treatment will move to clinical trials by March 2012. The institute will try for government approval and to have any therapies covered by public health insurance. Currently, breast reconstruction in Japan is not covered by public insurance.

But aside from all the good news that this story brought us, I was most impressed by how well this short article reported the news.

It explained very clearly who is involved, what stem cells will be used (in laymen's terms of course), how the therapy will be delivered, and most importantly what the plan is in getting the therapy to the bedside. All good reporting answering all of the 5W's.

You may be wondering what's so impressive about that; any first year journalism student should be able to do that. Remarkably, when it comes to stem cell reporting, the 5W's are often forgotten, sometimes even throwing in a few X, Y, and Z's for dramatic purposes.

I can't even count the number of headlines I've seen declaring the unparalization of rats, as if the goal of the research was to cure animals with spinal cord injuries. You may think that I'm making too much of a big deal out of this, but I'm not. The goal of a newspaper is to report news, not turn spinal cord regeneration news into a novelty or to trivialize it.

Even worse is the failure of the mainstream press to report how the paralyzed rats or monkey were actually treated with stem cells, or if and when the researchers are planning to move to clinical trials. The main point of the story, to the resarchers and those of us with spinal cord injuries, is if and when the procedure could be used on humans, but this is often missing or left vague from newspaper articles.

And even worse than trivializing stem cell research, it doesn't give people the information they need to actually see how close the research has gotten us to a cure. This leaves the average person thinking how nice it will be in the distant future when spinal cord injury paralysis is cured, instead of seeing it where it is and demanding that government take action to bring the remarkable work of scientists to fruition.

So I'm going to send my letter-to-the-editor off to the Yomiuri thanking them for a well reported story. Also from now on, I'm going to write to newspapers when they write a poorly reported article on stem cell research. If you know of any shoddy stem cell research reporting, let me know, and we'll write together.

You're not a scientist...but want a cure for Spinal Cord Injury

Many Canadians will know the man in this picture. He was chosen the greatest Canadian in a Canadian Broadcasting Corporation (CBC) poll. For those of you who don't know him, let me tell you who he was and more importantly, who he wasn't.

First of all, who he was. He was the premier of the province of Saskatchewan in Canada from 1944 to 1961. He led North America's first democratic socialist government and during that time made big improvements in the lives of Saskatchewans. He later became leader of the a new social democratic party, the New Democratic Party, after leaving Saskatchewan for national politics. And now, before I lose your attention, let me tell you who he wasn't.

He wasn't an engineer...

but he almost completely electrified rural Saskatchewan by creating the Saskatchewan Power Corporation.

He wasn't a teacher...

but he reorganized the public school system in order to equalize conditions and enrich the quality of education and increased the education budget.

He wasn't an economist...

but  from 1944 to 1948 the province of Saskatchewan saw balanced budgets in all of its first four years, while government spending rose by 20% (with impressive budget surpluses of $8 and $9 million in years one and two). Between 1951and 1959 government revenues rose from $63 million to $143 million. While spending grew, the province stayed in the black every year.

He wasn't a lawyer...
but in 1947 Douglas created and put into place Canada’s first Bill of Rights. It included protections for the freedoms of religion, speech, assembly and elections, while also legally prohibiting both racial and religious discrimination.

And most importantly, he wasn't a doctor...
but January 1, 1947 Douglas created Canada’s first universal and compulsory hospital insurance program, and on April 25,1959 Douglas announced his government’s intention to introduce a universal and comprehensive medical care insurance program for the province. He was inducted into the Canadian Medical Hall of Fame and he is only one of three non-medical professional laureates of this society.

So how did this Scottish born immigrant to Canada and  Baptist minister who as a kid almost lost his leg to  Osteomyelitis because his parents couldn't afford the medical care make all these things happen? He inspired people to act and only eleven years after his party was created, he became the premier of Saskatchewan.


He didn't bring medical care to people by raising donations for hospitals. He did it by making sure that people knew that free medical care was their right.


He wasn't an expert in medicine, but knew how to use experts to achieve his goals. He didn't just wait for the experts, he organized the experts and worked with them to achieve the goals that were most important to people. He built a movement and it changed people's lives.

PS. To keep this blog short, I at first thought only about writing about how Tommy Douglas brought medical care to Saskatchewans and all Canadians. I decided not to use the approach because I wanted to be fair to Douglas' memory. 

More on Tommy Douglas and his achievements: http://www.tommydouglas.ca/?page_id=88

Greater than the might of atoms magnified a thousand fold - Part III

Part I Part II


I think there are easily about 100 people who would love me to get up out of my chair. And if you add another twenty or so people who would like to give me a punch in the head but are refraining while I'm in a wheelchair, my number goes up to 120 people.

from the Rick Hansen Spinal Cord Injury Registry 2001/2002

I bet that I could get all 120 to sign a petition for better organization and funding for stem cell research (but I don't think petitions are an answer).

I bet I could get about 80 to sign a postcard and actually mail it back to me asking for the same, and about 50 would attend a demonstration to get me a cure. The twenty in line to give me a punch in the head would probably storm any necessary barricades.

Everyone claims that the spinal cord injury community is too small to gain the necessary attention for a cure, but I don't think so.


I am not one, I am one plus 100. I am 101.

Let's do some atomic multiplication to show that we're not such a small group.

Looking the chart, you can see that we are not a small group. When you consider just those with spinal cord injury, you can see that we are already at 2.5 million people. Multiply this by, let's say 50 friends, family members, and enemies, and don't worry about their friends and their friends and their enemies, then we have 12,500,000 people read to fight for a cure.


Did you know our world wide community was that big? Now that we know how big we are, it's time to get get organized.


Let's wait for the next few posts to see how regular people like me and you have changed the world and their own lives.


PS. I know our world is that big and that's why this blog is available in the following languages.
Japanese, Italian, and Russian. Soon to be followed by French, German, Chinese, and Romanian.

If I were a monkey, I'd be jumping, too

Everyone has good days and bad days. People in wheelchairs have them, too, but sometimes they are a little more pronounced than able-bodied people. Bad days tend to have a bigger impact on our bodies. 

Lately, my good days are far outnumbering my bad days, and this is good and bad. Good because I can get through the day without being uncomfortable or irritated, and that makes daily life easier to handle. Reintegration into society becomes a little more doable if you're not feeling like crap because of pain, or 'pins and needles', or a sore bum.

The bad point to good days for those with spinal cord injuries, or other chronic conditions, is that it fools us into thinking that life in a wheelchair isn't so bad. That living in the chair for life wouldn't be so bad. That maybe there is no need to fight for a cure when you're having so many 'good' days.

So I regularly need to remind myself that regardless how smooth things are going for me, I have to continue my fight to get cured. The point is to walk again, not to like my chair. 

Of course, if a cure weren't possible, then maybe resigning yourself would be best, but recent announcements this year regarding stem cell based cures for spinal cord injury, tell me that we are close, but your help is necessary.

The point of this blog was never to be a scientific journal, but to point out to people how possible, the once unimaginable, has become. There is no sense in me telling you to fight for a cure for spinal cord injury if you don't believe that it's possible, or if the science doesn't exist. 

Science is doing terrific things right now that will affect me and others you may know, in the very near future, but we won't get these things without pushing our own governments to speed up the process and spending the necessary resources to get us a cure.

Here is a big announcement from Japan just this month.

The first is an announcement made in here in Japan just a few weeks ago. With the use of  induced pluripotent stem cells (iPS cells - basically your own cells turned back into an embryonic state which can therefore become any type of cell) once paralyzed monkeys are getting unparalyzed. These monkeys were paralyzed from the neck down and within a week they got back their hand strength and could stand. Six weeks later they were jumping; jumping for joy, I bet.

Now there are still problems with iPS cells. There is a fear of the cells turning into cancer, but these monkeys haven't had a hint of cancer after three months. It also takes a lot of time to create the cells. In this case it took six months, but the monkeys got their cell transplants after only nine days of being paralyzed. There is still a long way to go, but it's getting closer.

But the most important thing about these cells is that they were first created from mice cells in 2006 and then in human cells in 2007. Three years later, they are being used to treat spinal cord injury in animals. That's speed, and shows how far stem cell research for spinal cord injury has come.

Compare this with embryonic stem cells and you'll see how quickly things are moving. In 1981, mouse embryonic stem cells were first isolated and grown. It took 17 years to be able to do the same with human embryonic stem cells, and then took another seven years to be able to use them on paralyzed mice. It wasn't until this year, four years after the mice walked, before they were even tried on humans. We're still awaiting the results of these safety studies, but this will be very interesting.

I'm not trying to push one type of cell over the other. Just trying to show how fast things are going and that the

science to get me out of this chair is here. Now if we can only get governments behind this, I'll be jumping, too.

From Atomgrad to Stemgrads - Welcome to СтволовыеКлетк&AтомныеБомбы

The Russian version can be found at: www.stvolovyekletkiiatomnyebomby.blogspot.com

In high school history with Mr Martin...

And he used to say. "No one would like to live in the Soviet Union," he'd pronounce it 'SAWviet Union', "except maybe for Tesolat."

We were studying the Cuban Missile Crisis, or at least his version of the Cuban missile crisis, and teaching us how outrageous it was for the Soviets to try to put nuclear missiles in Cuba, when I asked a question.

"Then isn't it equally wrong for the US and NATO to have nuclear weapons in western Europe pointing at the Soviet Union." Well, after that, when ever we studied anything remotely to do with communist countries, I'd hear the refrain.

"No one would like to live in the Soviet Union, except maybe for Tesolat."
"No one would like to live in Red China, except maybe for Tesolat."
"No one would like to live in Castro's Cuba, except maybe for Tesolat," and on...and on...and on...

But just in case Mr Martin looks at this, I want to make sure that he knows I liked his classes, because even though he had his own version of history (and most historians do), he didn't prevent us from arguing our points.

I have to admit that I was truly impressed by the Soviet Union when I was in high school. I later learned and studied things that made me change my mind, but that was later.

Here was a country, which we were told was evil, corrupt, and backwards compared with the west, but they beat the Americans into space. More importantly to this blog, they were the second country on earth to possess an atomic bomb. They did this, after four years of war where they lost over 20 million people. After one in four Russians was either killed or wounded. After their country was left devastated from World War II, and they did it in seven years.

They realized that such technology could not just be acquired willy-nilly with researchers working uncoordinated at universities throughout the country. The Soviets went so far as to build Atomgrads. These ten cities were were nuclear weapons research and development took place. Again, we can see clearly how the full weight of the state is the only thing that can produce such technology, and in a very short time.

Regardless of what I learned later, it still doesn't change the fact that both the Soviet race into space and the creation of an atomic bomb, so soon after the horrors of World War II, are remarkable feats.

With the launching of this blog in Russian today, I hope that the new Russia can also become world leaders in stem cell research. Mr Putin has already showed how to get world leaders together when he hosted a thirteen nation conference on saving tigers. I like tigers, but I hope that the Russian leaders will make the same effort for people with the many diseases that stem cells hope to cure. I'd love to see ten Stemgrads built in Russia.