Thursday 8 July 2010

Do we dare to dream?

Since as far back as I can remember there has been a promise in the air. It is a promise which could quite literally save the lives of two hundred and eighty-five million people. It's hard to imagine how many people that really is. Look at it again:


That is almost 5 times the amount of people in the UK. Imagine all your friends, family, loved ones, work colleagues, celebrities you like and those you don't, political leaders and favourite authors. Imagine all of those people lived with a disease that dictated many of the decisions they make every day. Imagine those people spent every day piercing their fingers, doing injections, recording results, weighing food and calculating insulin doses. Imagine if most of them developed complications. Complications such as kidney failure, ulcerated feet leading to gangrene, blindness, heart failure or death.

Ever since I was diagnosed - or at least since I can remember - 'we' have been promised that there is a cure on the way. At first it was pancreas transplants, this fantastic new concept or replacing the damage pancreas with a shiny new(ish) fully functional one. At one point in time this was the 'cure' to diabetes. There was just one draw back; rejection. The problem with a transplant is that when the organ is replaced, the human body - amazing as it is - is very likely to reject anything you put in it which wasn't intended to be there. Granted, you might think I would prefer anti-rejection drugs over shots, calculations, complications and all the other pain in the backside things that come along with this disease, but the truth is anti-rejection drugs come with a lengthy list of health warnings. For starters, you have to find the right concoction. I looked up just a few of the anti-rejection drugs and found this lovely list of side effects:

High Blood Pressure
Abdominal Pain
Liver toxicity
Kidney toxicity
Significant hair growth (I'm thinking women with beards)
Overgrowth of gum tissue (Yuk! Right?!)

Many of these will have to be taken several times a day. And the effects of how they make you feel and the effects they have on your body are huge.

OK, so you've reached the decision to go for it, you have sat in a numbered queue on a waiting list and finally found a pancreas donor. You have had the procedure and have gone through the above symptoms as a way of getting rid of the diabetes. The fact is there is a real chance that your new organ STILL won't accept.

Believe it or not the pancreas actually does a lot more than just produce insulin. It also produces digestive juices which your body needs. So if the pancreas rejects, which is a very real possibility, you then effectively become diabetic (again) and now have to take a bunch of pancreatic enzyme supplements so you don't struggle to digest anything you eat (watch the carb content, you're diabetic again now remember?).

OK, I think we all catch my drift here - as wonderful as it sounded initially, there are health warnings screaming at you from a mile off. I'm not convinced that putting my body through all of that will really make me live any longer. In fact I am fairly sure that my body would give up after 24 years of diabetes and then countless more on drugs and supplements, or with diabetes AND drugs supplements.

Right, next the cell research phase arrived. Stem cell research has dominated the headlines in the last few years and has given many people with diseases (not just diabetes) a ray of hope. Embryonic stem cells have the unique ability to become any other kind of cell, from skin cells to brain cells. Unlike adult stem cells which are hard to locate and identify, embryonic stem cells have the potential to also become insulin-producing cells; those which were destroyed in people with type one diabetes. The idea of stem cells is that you will be able to 'top up' or replace cells which are no longer able to produce insulin.

Pancreatic islet cells on the other hand are taken from a corpse, 'cleaned' and injected into the Liver. They too should begin to produce insulin and may be the answer to diabetes.

However, as with a full pancreas transplant, this kind of transplant still requires a concoction of anti-rejection drugs, which can still leave you open to serious illnesses and diseases. Added to this, the procedure itself is very invasive.

I think you can see that I'm not a scientist and my explanations are brief and broad. The truth is, all the scientific stuff can baffle me and I live with diabetes, I don't study it for a living. But I never intended this blog to be about science, or even about fact. It was always supposed to be about experience. And my experience was that I went to a conference a couple of years back and asked the question, "When will there be a cure?". The specialist proceeded to tell us that in America they had already tried this on 6 willing participants. With one, the jury was still out but it seemed to be working. On another, the procedure hadn't worked at all. With two, the procedure worked but ceased to work after a few months. There was one story I can't remember, but the one that stuck in my mind the most was the last, the final participant died.

Granted, the developments since then have been phenomenal and as far as I know people aren't dying left right and centre, but that story has stuck with me. Out of six people who thought they'd been handed a winning lottery ticket, one ended up without a life.

The jury is still out on this for me. Although stem cell and pancreatic islet cell transplantation apparently goes on all the time, and indeed you can go abroad and pay to have the procedure yourself, there are warnings all over the place about having it done overseas where research and clinical tests are not as rigorous as here in the UK.

In total it costs the NHS £9 Billion per year to treat diabetes, which is ten per cent of the NHS budget. If this procedure was fool proof or at least had a great chance that the host of the disease was prepared to take a risk for, would it not mean the NHS would be saving money left right and centre within the space of a few years? Imagine the good that money could do; better cancer treatments, better maternity care, newer hospitals, better pay for NHS staff, less disease (stem cell research is also key for other highly expensive to treat diseases). I would have thought (again, just my opinion) that even if it cost £20,000 per person to carry out the procedure, they would be very keen to spend that on all those who have worse control, use up more resources (sorry to sound cold, but it is a reality) and are more likely to develop the condition, and then work there way down the list of those needed the cure. I don't know that for a fact, but it seems like common sense to me.

The latest in the way of promises comes from a report I read on the Discovery News channel. Apparently scientists have been able to cultivate tissue that has grown into a new pancreas in pigs. This was then injected with the stem cells which in turned began to produce enough insulin! I know, amazing huh?!

I was amazed when I read this and for the first time in a while felt a little glimmer of hope spark inside me. But I had to step back and remind myself that it can take years to get medicines and procedures through the clinical trial stages. I was once told the longest a drug had taken from testing to the chemist shelves was 18 years, with new drugs taking anything between 10 and 15 years to get through all the clinical stages. As wonderful as it is that new treatments are always coming out of the woodwork, in the last 15 years I certainly haven't seen or heard much other than 'this is currently undergoing rigorous testing'.

As much as I would love to be able to get my hopes up about this, I have to constantly remind myself - as a person whose life could quite literally be saved by this - to remember that if any highly regarded and promising new procedures fail any of the 3 testing stages, they are then back to the drawing board. Some say (and I would agree) that animal testing is now almost obsolete due to the fact that even with apes one drug can kill them but not harm us and vice versa, but the fact remains at the moment this is the type of trial that these new promises have to make it through. And if anything goes wrong, it's curtains.

I truly hope and will keep everything crossed that this is at least in one stage of testing, but the article sounded a little as though this was still in the experimental stages. It was just a good enough piece of news to reach the headlines of one publication.

I guess we'll find out when I update this post.

I just hope there are still laptops in 18 years....

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