29 January 2011

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.

19 January 2011

Liberty. Equality. Fraternity

File:Logo de la République française.svgWelcome 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.


04 January 2011

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.