By Sue Marshall
If you’ve had diabetes as long as I have (35 years and counting), you’d be interested in turning up to see Richard Lane speak. He’s the first man in Britain to have had a islet cell transplant with the result that he no longer needs to take insulin injections.
Going to hear another diabetic speak about their experience isn’t everyone’s idea of a good time. But, with Richard, he manages to tell a fairly harrowing story about his life with diabetes with humour and warmth, and the punchline is that he’s alive and well – better, in fact, than he has been for about 20 years.
“I’ve been fortunate to have had break-though treatment,” he says, “which makes me very happy, and is a huge relief to my wife, children and all those who care about me. The surgery was paid for by Diabetes UK via it’s research funding and I want to be able to show my gratitude by explaining the operation and the potential it has for others with the condition.”
Richard is one of twelve people in the UK to have had successful islet cell transplant operations. There are many more in Canada and others around the world too. Of these all those who’ve had the operation at Kings, he’s the tallest and the heaviest. This is relevant because 15,000 beta cells are required per human, per kilo of weight, in order to ‘cure’ the patient of diabetes. Richard needed 1.25 million islet cells to be transplanted, which meant three pancreas donors.
So, what does islet cell transplants involve? Islets are groups of cells in the pancreas which contain the insulin-producing beta cells. Beta cells make insulin which is released as required in order to keep the body’s blood glucose levels just right. In people with Type 1 diabetes, the beta cells are destroyed so they must take insulin by injection to remain healthy. This means having to estimate how much insulin they will need. For some people it is very difficult to achieve stable blood glucose levels.
Islet transplantation is a procedure in which an individual’s destroyed islet cells are replaced using cells harvested from donor pancreases. Typically, a transplant patient will receive islets from up to three donated pancreases. The transplanted cells produce insulin which stabilises the diabetes and reduces or eliminates the amount of insulin that needs to be administered. In some cases the transplanted cells may produce enough insulin to allow a person to come off insulin completely.
With the help of its members and supporters, Diabetes UK raised the money needed to pay for the first islet transplantations to be done in the UK. The drugs required to prevent rejection of the transplant can have serious side effects. This means the procedure is currently only suitable for those people who have extreme problems controlling their diabetes and as a consequence have drastically reduced quality of life.
So if you need to know why Richard, out of the 2.25 million diabetics in the UK today, received the treatment, it’s testament to how much his diabetes had affected his life.
Richard was diagnosed with diabetes in 1976 when he was 32. He explains that while he’d been ill for a while, it took some time to get the right diagnosis. “I actually said ‘hooray’ when I was told, but that was because I thought I was dying, so to know that I was dealing with a so-called manageable condition was a huge relief.” However, it soon became apparent that Richard had a version of diabetes that is termed ‘brittle’. It’s essentially a very hard to control, unpredictable form of the condition which involves sudden low (and sometimes extreme) blood sugars called hypos. Some of these can be so severe the patient slips straight into a coma with no warnings.
Hypos are a common factor for those living with diabetes. However, many diabetics are attuned to — and get good warnings of — a looming low blood sugar. They get hypo symptoms and can to avert the low blood sugar with an intake of sugar. For Richard, his diabetes was pretty much a ‘worst-case scenario’, with dramatic and dangerous sudden hypos and comas. He once passed out at the wheel, crashed his car and broke his back – a direct result of his diabetes.
In the late 1990s, Richard was referred by his local hospital to Kings College Hospital in Denmark Hill, London, where he met Professor Peter Watkins and his successor, Professor Stephanie Amiel. Having tried using an insulin pump – which did improve his control for a few years, when he was offered the chance for a islet cell transplant in 2004, he jumped at the opportunity.
“It involved lots of tests,” he says, “working with a team of 12 doctors, including a psychiatrist. I was warned about the risks, and had to be assessed to see if I was ‘mentally robust’ for the procedure. The real strain was not the thought of the operation, it was waiting for a donor pancreas to become available. In fact, three of them, as I had three operations in total over a period of four months.” Transplant islet cells die very quickly so extracting them has to happen quickly. Then a probe with a canula on one end is pushed in between the patient’s ribs and into the portal vein. Beta cells in plasma are dripped in and they circulate and end up on the liver.
After the initial transplant Richard remained on the pump but the insulin dose could be turned down. “I was euphoric,” he says, although he had to take anti-rejection drugs. He still takes two forms of these oral drugs, a total of 19 pills a day, but he was on more. The second operation was successful and his insulin was once more turned down. Three weeks after his third operation he took the pump off and handed it back. “It was a joy, and a celebration for all involved, not just myself,” he says, “It’s truly been a breakthrough in the treatment of diabetes and I feel hugely privileged to have been a part of this story.”
Today, Richard does wear a pump again as a viral infection “damaged my lovely new beta cells”, but he may have another operation to ‘top up’ the number of cells he has. The various complications that Richard has experienced as a result of his diabetes (for example diabetic retinopathy and Dupuytren’s contracture) have been reduced, and he’s not had a major hypo since the day before his first operation.
The issue now facing the diabetes community is that this is a viable treatment, but mainly for those with dramatically bad control. The biggest threats to success is the anti-rejection drug therapy and the lack of available donor pancreases.
When I went to see Richard talk, it was his 81st talk in the UK about his experience in the last three years since having the surgery. Why does he do it? “Diabetes UK paid for all the research that has lead to this. Money put into research works. I’m proud and happy to share my experience in order to help raise both awareness and money. Diabetes costs the NHS four times as much as all the cancer treatments it funds. This treatment has utterly changed my life and I want to let other people with diabetes know how.”