Richard Lane is someone who lived with diabetes for a long time before being one of the first people in Britain to have pioneering surgery in 2004-05 to have pancreatic islet (stem) cells from three organ donors put into his body where they began to secrete insulin, ‘curing’ him of diabetes.
A cure is coming
He is an impassioned speaker, eager to share his experience to give other people with diabetes hope that a cure is coming, even it if is still on the horizon for most at the moment.
He says, “I have been extremely fortunate to have had break-though treatment, which makes me incredibly happy, as it does my wife, children and all those who care about me. My thanks go to all of them. My diabetes story started when I was 32. I had odd symptoms and it proved hard to diagnose. I was really quite ill and thought I had cancer because of an extraordinary loss of weight and other relevant symptoms. I actually said, ‘hooray’, when I was diagnosed with diabetes It was a relief, but little did I know what was in store for me!”
Considering islet cell transplantation
In 2004, after retiring through ill health, Richard was asked to consider islet cell transplantation.
At this point there had only been seven people in Canada and two people in England who had undergone the operation. After two months of extensive tests, risk assessment and education , which involved his wife as well as himself, he was put on the waiting list for his first transplant.
“The support that I received from the team of surgeons, doctors and specialist nurses, including a psychiatrist, was fantastic,” he remembers.
15,000 beta cells
As many as 15,000 beta cells are required per huma, per kilo of weight, and at the time Richard was the oldest, tallest and heaviest of the patients operated on to date, needing 1.25 million islet cells.
Each operation involved the insertion of a probe with a canula on one end, which is pushed in between the ribs, through the liver and into the portal vein.
Beta cells in plasma are dripped in and are distributed into the liver. It can take up to three transplants as many of the islet cells die during the process.
It was a good result though. Richard says, “I was the first person in the UK to completely come off insulin. This situation continued for about a year, but I have now had to go back on to insulin. I’d contracted a viral infection from which some antibodies developed which are damaging my lovely new beta cells, and now I have to supplement my natural insulin via the pump and count carbs again.”
“The fact is that my first two aims have been achieved – to eliminate hypos and to stabilise the diabetes-related complications I was experiencing, so to not have fully continued to achieve the third aim (to come off insulin) is a small price to pay. I’ve not had a major hypo since the day before my first operation. If necessary, and if a suitable drug can be found to resolve the immuno-suppression problem I might have another transplant, which may correct this.”
Chariman of Diabetes UK
In November 2008, Diabetes UK announced that Richard Lane OBE had been elected as the charity’s new President. In the UK, Diabetes UK had set up the Islet Cell Consortium, which brought together nine islet research centres from around the country to ensure the technique was available here for the benefit of people with diabetes.
With the help of its members and supporters, Diabetes UK raised the money needed to pay for the first ten islet transplantations to be done in the UK according to the “Edmonton Protocol”. Since then, Diabetes UK has secured funding from the NHS to transplant other patients.
Islet cell transplantation has now been accepted by the NHS as proven and recommended treatment , but only for those who have lost their warnings of hypos, and who have other serious problems with their diabetes.
This restriction is mainly because of the shortage of organ donors, although research to produce stem cells in the laboratory is proceeding very satisfactorily, and if successful, will resolve the problem of the shortage of organ donors.
However, the therapy is not yet sufficiently well advanced to guarantee insulin independence and therefore freedom from diabetes, but the signs are really encouraging.