This blog post has taken me a long long time to write. One reason was of course my operation which knocked the wind out of me, but after hearing that Geron (the first company in America to win clinical trials using embryonic stem cells to treat spinal cord injury) was abandoning its clinical trials, I had to do a lot of rethinking about the best way forward to a cure. Oddly enough, it brought me back to a story called 'Mouseland'. Here I go.
The headline in the 21 November 2011 Los Angeles Times explains the whole story best:
But I can sum up the story even easier - cats eat mice.
I was informed about this story by a reader who felt devastated by what she felt as "Geron abandoning me and others for profits." What made it worse was that it wasn't abandoned because of concerns of the science or the safety, but simply because Geron did not see any potential to make money off these cells to treat spinal cord injury in the near future. Fair enough, cats don't chase mice for fun, they do it for food.
But oddly enough, I didn't feel let down by Geron. Me criticizing Geron for this would really be like criticizing cats for eating mice. Geron is a private company and the goal of a private company is to generate profits for their shareholders. If they can do it by curing paralysis that's great, but in Geron's case they decided that they could make more, and more quickly, with cancer drugs (more people have cancer than spinal cord injuries). Let me also be clear, I don't think that the people at Geron are bad, but in the end, they did what cats do, they ate the mice (in fact they first cured mice of spinal cord injuries), meaning that they did what was natural - they moved into a better position to make money.
I'll admit it though, in the absence of understanding how we can move research along to cure paralysis without depending on private profit, I secretly cheered for the cats at Geron against my better judgment and against myself, one of the mice.
Well, their abandonment of these trials made me have to sit, think, and search for another way forward that is more in line with my own thinking. And then I found an article that articulated what I always knew and felt.
The Horrifying Hidden Story Behind Drug Company Profits (Huffington Post: 4 August 2009)
While the story is not about curing paralysis it is about how the patent system stops people in the poorest countries from getting medicines they need simply because of profit and why we aren't always best served by profit. Furthermore, it articulated something that I had always thought about the role of pharmaceutical companies in making new medicines.
"Our governments have chosen, over decades, to allow a strange system for developing medicines to build up. Most of the work carried out by scientists to bring a drug to your local pharmacist -- and into your lungs, or stomach, or bowels -- is done in government-funded university labs, paid for by your taxes. Drug companies usually come in late in the process of development, and pay for part of the expensive but largely uncreative final stages, like buying some of the chemicals and trials that are needed. In return, they own the exclusive rights to manufacture and profit from the resulting medicine for years. Nobody else can make it."
But still there was no answer in regards to how to change the current system of creating new medicines or therapies.
"But a detailed study by Dr Marcia Angell,the former editor of the prestigious New England Journal of Medicine, says that only 14 percent of their budgets go on developing drugs -- usually at the uncreative final part of the drug-trail. The rest goes on marketing and profits. And even with that puny 14 percent, drug companies squander a fortune developing "me-too" drugs -- medicines that do exactly the same job as a drug that already exists, but has one molecule different, so they can take out a new patent, and receive another avalanche of profits."
"As a result, the US Government Accountability Office says that far from being a font of innovation, the drug market has become "stagnant." They spend virtually nothing on the diseases that kill the most human beings, like malaria, because the victims are poor, so there's hardly any profit to be sucked out."
This did get me thinking about spinal cord injury. The market to cure malaria is huge, but the victims are poor so they don't get a drug to cure malaria because no one will make much money of it. In terms of paralysis, even though it also exists in 'rich countries', the market is too small to warrant massive investment.
But these criticisms didn't give me a new understanding or show me away to make sure that I could back the mice to cure the mice. Luckily I kept reading and found what I was looking for at the end.
Today I will leave the story at that, but have a look at the end of the article and I'll continue very soon as I'm excited about this very interesting idea as it has the potential to unite people from many different disease groups with regular people who pay taxes into a very strong group of people who could make a change that affects my life and my pocketbook.