Tequila shots for cirrhosis research

View-The Fifth Estate "Hitching a Ride" 6 Jan. 1987

Eric Malling interview with Rick Hansen - Thunder Bay, Ontario as he was about to head into the Canadian prairies in the dead of winter before returning to British Columbia and completing his 'Man in Motion' world tour to raise funds for spinal cord injury research.

Malling also interviewed 'others' for this programme.

Peter Cavanagh who was disabled by polio and wrote the article, Stunt detracts from real issue in regards to the 'Man in Motion' tour.

Norman Kunc, who suffers from Cerebral Palsy and is the author of "Ready, Willing, and Disabled".

Judith Snow who has Muscular Dystrophy and works with an organization supporting the disabled.

Alan Arlette from the Canadian Centre for Philanthropy.

The 'others' raised some very interesting questions about how society deals with curing and caring for disease. As Hansen begins his twenty fith anniversary 'Man in Motion - Part II' world tour, maybe we all need to discuss why world governments, who control massive financial resources, rely on private fundraising, or super heroes, to cure and care for its citizens.


Peter Cavanagh on Brian Mulroney giving Hansen a cheque for one million dollars.

This is not the way you deal with fundamental social problems…you do not deal with it through stunts.

If that’s the way we solved problems, we move money around on the basis of ‘who’s wheeling through town’ and catches our attention next. Give him a million bucks.

I mean Brian Mulroney might have just taken the money in a lump, put in on his lap and watch it wheel out of town, counting votes as he did.

That wasn’t a serious response by a federal government charged with dealing with the affairs of Canadians, was it?

Judith Snow on Mulroney's million.

Snow: I worked for the federal government for a short period of time. I think that, probably, what’s happening is, is that someone is making political hay, which is not what Rick Hansen needs. He doesn’t need more political hay.
Malling: But that’s terribly cynical. I mean surely, politicians aren’t going to ride on the back of a wheelchair?

Snow: Why not?

Norman Kunc on the need for research funding.

Research becomes a charity, a privilege. People say, “we’re going to do you a favour. Here’s a hundred dollars, here’s five hundred dollars, so you can do research”. 

Research should not be a privilege but an ongoing right with funds being supported by the community.

You don’t see the Canadian Armed Forces travelling across Canada getting handouts so that they can buy new uniforms.

Alan Arlette being questioned by Malling in regards to government cuts to research funding

Arlette: We need a steady flow of government funds into medical research…that’s fundamental to a healthy society

Malling: What do you make of Governments in some cases cutting back on research money with one hand, but being happy to get in front of the cameras to give it to Rick Hansen?

Arlette: I think that it’s hypocritical and it’s exploitive and it harmful in the long run to what we need in this country.

Peter Cavanagh on fundraising.

The next time a society, be it the colitis and ileitis society, wants to raise money from you or from me or from anybody else, they’ll have to figure out some sort of stunt to get the money and maybe we’ll become a bit hardened and we’ll say, "I want to be impressed a bit more, I mean, the last guy wheelchaired across the country," so if you’re going to come up with a stunt to raise money, you better come up with a more extravagant, more spectacular stunt.

I suppose if you were the Kidney Foundation and you were planning ahead, you’d hope that some super human athlete would have some sort of kidney problem and maybe they could do a stunt and you could raise money.

Norman Kunc on competing diseases groups raising funds

So what happens is people with cerebral palsy want to do their fundraising and they're not as glamorous as Rick Hansen? Does that mean the public give more money to Rick Hansen than cerebral palsy? Then the whole medical research funding is turned into a beauty contest.

Of course, looking at all the comments in this interview with 2011 eyes there were some mistaken comments. Some in the interview said that the world would forget Hansen. That once the cameras stopped flashing no one would care about the rights of spinal cord injured people. They were wrong. Rick Hansen has gone a long way in raising awareness and money for spinal cord research, but twenty five years later, there is no cure for spinal cord injury.

I guess after transcribing these opinions, I don't have much more to say, except for one thing.

In the world of curing spinal cord injury there are a lot of new efforts taking place in regards to basic research and clinical trials. While everyone competes against each other for donations and private companies are at the mercy of their investors, will we ever get to the cure that is surely out there while having to compete for charity against much bigger and much better organized 'disease' groups?

Maybe it's time for a rethink.

Italians and their scaffolding

The ceiling of the Sistine Chapel

First there was Michelangelo and his specially designed scaffolding which he used while painting the Sistine Chapel.


Then there was my father, laying on his back on the scaffolding with a cigarette jutting out his mouth, putting swirls on people's ceilings. I remembered seeing a picture of Michelangelo on his scaffolding when I was a kid and I wondered if my father and Michelangelo were related (I used to think all Italians were related).


If you've ever seen fancy design work on people's ceilings, you'll understand what plasterers and artists have in common; a beautiful mixture of art and construction. I grew up around a lot of Italian tradesmen when I was a kid. Plasterers, bricklayers, painters (one guy's name was actually Michelangelo), carpenters, and you can really see the art of Italy in their work.


Now, before you start wondering if I've given up on a cure for spinal cord injury and decided to comment on art or Canadian ethno-cultural history, let me tell you about two more Italians and their scaffolding.


Their names are Angelo Vescovi and Fabrizio Gelain. They aren't artists per se, they are researchers at the CNTE at Niguarda Ca'Granda Hospital, University of Milan-Bicocca and IRCCS Casa Sollievo Della Sofferenze, but we've all heard of the "art of healing".


Like always, I'll give you the link to the deep science of it all, but I would like to look at a few comments made by these researchers.


Gelain states, "we managed, for the first time, to obtain a consistent regeneration of the nervous tissue in chronicized injuries at the spinal cord by using a nanostructured composite scaffold with no cells in it." By this 'no cells' he is talking about things like stem cells or other blood derived cells that are also being worked on to regenerate the damaged spinal cord.


He then goes on to explain that, "By themselves, nanostructured scaffolds probably will not solve the problem of regenerating chronic and acute spinal cord injury" says Gelain. "However, they will become a necessary component of an effective multi-disciplinary therapy in the near future."


This 'multi-disciplinary therapy' comment is what most interests me. My concern is that, even though I really respect scientists and their work, no one seems to be coordinating this 'multi-disciplinary' effort. This is we have to get real people involved in a cure for spinal cord injury. Left only to scientists, they may miss things, or be so enthralled in their own work, that they forget that 'multi-disciplinary' efforts are best.

More government coordination of different approaches is what I feel is missing from the whole effort to cure spinal cord injury, and when I say government, you know that I mean your involvement, because you are the only ones that can make governments act.

If President Roosevelt could plan an atomic bomb in five years, and President Kennedy could lay down a challenge to put a man on the moon in ten years, then what we need now is a leader to demand that all these therapies are brought together to cure spinal cord injury now.

I would hate to see Vescovi and Gelain's very hopeful scaffolding technique lost to the world of Italian art.

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.