From Research Guinea Pig to President of Diabetes UK in Four Years

Richard Lane, president of Diabetes UK, has type 1 diabetes and was one of the first people in the UK to receive islet cell transplants.  He was the first person in the UK with type 1 diabetes to come off insulin altogether. Richard received the first of three transplants in March 2005 after a long history of diabetes-related complications, comas and severe hypos. The transplants transformed Richard’s life.  He took the time to tell A Sweet Life about it.  Thank you, Richard!

When were you diagnosed with diabetes?

I was originally diagnosed with type 1 diabetes in April 1976 when I was 32 years old, and initially cared for by the Diabetes Unit in Bromley Hospital.  I have been a patient of the Diabetes Centre at King’s College Hospital in London for many years, and on 26 January 2005, a date that I will never forget, I received my third islet cell transplant at King’s. Shortly afterward I was formally announced by my wonderful consultant, Professor Stephanie Amiel, as the first person with diabetes in the UK to be classified as ‘insulin independent’ following successful islet cell transplantation.

I can’t imagine what you must have felt when you heard those words.

To describe my family’s and my own states of mind as “euphoric” was, and remains, a material understatement!

What was your life like before you underwent islet cell transplant?

For nearly 30 years, I had increasingly brittle type 1 diabetes. I was experiencing an accelerating number of severe ‘hypos’ and sadly, comas, most of which developed without much- if any- warning. Additionally, I had developed a number of severe diabetes-related complications, in particular in my feet, legs and eyes. In 1999 Professor Amiel, who was promoting the use of insulin pumps, and shortly afterward pioneered islet cell transplantation in the UK, asked me to consider the latter. In fact, she invited me to become the very first person in the country to be treated in this way.  I was extremely unwell at that time, and my wife and I decided against it. I therefore agreed to transfer from injections to insulin pump therapy. For about three years, despite a continuing series of ‘hypos’ and a few more comas, my health marginally improved.  Then, unfortunately, it began to deteriorate again, resulting, amongst other problems, in me seeking early retirement in December 2003 from my demanding job as a partner in BDO Stoy Hayward, and shortly afterward another very severe coma. Prior to my first transplant, I was experiencing up to six severe ‘hypos’ each week – still with little or no warning.  Following this last coma, Professor Amiel asked me to reconsider my decision not to undergo islet cell transplantation. After two months of intense medical tests, risk assessment, education and explanation, which not only involved me, but also my wife, we had no hesitation in agreeing to go ahead.  On September 15, 2004, I was placed on the waiting list for the first of three planned transplants, which involved a search for three suitable pancreases from deceased persons, people who had sadly died with their hearts still beating.

Why did you require three transplants?

I always knew that I would need three transplants because a large number of the islet cells die in the process of being retrieved and prepared for transplant.  The first transplant took place after two weeks, the second four days afterwards, and the third, after sixteen weeks. The first two transplants resulted in successfully eliminating ‘hypos’, which was my first priority.  My second priority was to stabilize existing diabetes-related complications and eliminate further problems.  Becoming insulin independent was only my third priority. You can imagine the absolute delight we felt in finding that all three of these priorities, especially the first, had happened!

What about anti-rejection drugs?

I now take a large number of tablets each day, chiefly anti-rejection drugs, but frankly I really don’t care at all, as the advantages that I am now experiencing so outweigh these minor disadvantages. I am also now taking a relatively small amount of insulin again, but this does not bother me at all as warnings of ‘hypos’ have returned, and I am able to deal with them comfortably.

In the future, do you think islet cell transplants will be a viable option for the majority of type 1’s?

The Department of Health announced, as of April 2008, that they have accepted that islet cell transplantation should become mainstream treatment. This is something that Diabetes UK and King’s College Hospital have been striving for over the last two years or so, and is fantastic news for us all.  However there is much still to be done to further develop of the treatment, in particular the anti-rejection drug therapy. As far as King’s is concerned. a new specialist laboratory is desperately needed, in which the islet cells can be prepared, and the overall treatment and the necessary research further developed.  I have helped just a little in raising funds for this vital project, in particular by organizing a concert of classical music held at Dulwich College, involving my son who is a professional pianist. This concert raised over £16,000!

Please tell us more about the work you do on behalf of Diabetes UK.

Since my last transplant, I have spoken all around the UK on about 110 occasions about the extraordinary transformation in my life, and in the lives of my wife and children, that this treatment has achieved. Diabetes UK kindly appointed me as an Honorary Life Member in 2006/2007, then as a vice-president and recently as president of the leading health charity. I am still astonished that this incredible privilege has been bestowed on me, and I am passionately and energetically committed in my new role to improving the lives of people of all ages with diabetes, and of those who care for them.

It is my personal challenge to do whatever I can to help Diabetes UK and also to raise the substantial funds that are still being sought by the King’s Appeal for the further research that is necessary. I am determined to see that the development of both the treatment and the drug therapy that goes alongside this amazing breakthrough become available to many others with  type 1 diabetes, who desperately need and deserve the opportunity that I have greatly benefited from. With the continued and committed help and support of all concerned, there really is “A Future without Diabetes.”

Jessica Apple

Jessica Apple grew up in Houston. She studied Bible and Ancient Near Eastern Studies at the University of Michigan, and completed an MA in the same field at the Hebrew University. She began to write and publish short stories while a student, and has continued to write essays and fiction while raising her three sons (and many pets).

View Author Blog

Jessica Apple

Jessica Apple grew up in Houston. She studied Bible and Ancient Near Eastern Studies at the University of Michigan, and completed an MA in the same field at the Hebrew University. She began to write and publish short stories while a student, and continues to write essays and fiction while raising her three sons (and many pets). Jessica’s work has appeared in The New York Times Magazine, The Financial Times Magazine, The Southern Review, The Bellevue Literary Review, Tablet Magazine, and elsewhere. She is the diabetes correspondent for The Faster Times. In 2009 she and her husband, both type 1 diabetics, founded A Sweet Life, where she serves as editor-in-chief. Jessica loves spending time with her sons, cooking with her husband, playing with her cats, reading, biking, drinking coffee, and whenever possible, taking a nap. Follow Jessica on Twitter (@jessapple)