The Big Interview – Karen Addington
Karen Addington is the chief executive of JDRF, a global organisation and the world’s leading charitable funder of type 1 diabetes research.
Read Ms Addington’s views on how diabetes research is approached and what she would like to see changed in the future.
What are your priorities at JDRF?
There are currently 400,000 people in the UK with type 1 diabetes, over 29,000 of them are children. We are committed to eradicating type 1 diabetes and its effects for everyone in the UK with type 1, and those at risk of developing it.
To work towards a day when there is no more type 1 we do three things. We fund world-class research to cure, treat and prevent type 1 diabetes.
Secondly we make sure research moves forward and treatments are delivered as fast as possible.
Thirdly we give support and a voice to people with type 1 and their families.
What’s your biggest achievement so far at JDRF?
Decades of JDRF-supported research have led to new treatments becoming a reality. For example, early generation artificial pancreas systems are coming to market. Even more sophisticated versions will follow as research in this area continues.
There has also been rapid progress in our understanding of the causes of type 1 and what we could do to prevent and cure it. We can measure by the growth in clinical trials internationally which means research is moving from the laboratory into having real-life application in people.
On a community level, in the UK there is a growing awareness of the fact there is more than one type of diabetes. Yes, there are still myths and misunderstandings about type 1 diabetes, not to mention misrepresentations in the media. But the situation is slowly improving. This improvement has been hard won and it makes life a little easier for those in the type 1 diabetes community.
What is the biggest challenge faced by the type 1 diabetes community today?
Access to type 1 diabetes education and technology. The vast majority of people with type 1 diabetes have not been offered the chance to participate in diabetes education or do not recognise that it has been offered to them. There’s a postcode lottery that exists as to whether courses are available locally.
People living with type 1 also face many challenges when it comes to accessing diabetes technologies. We believe that each and every person with type 1 diabetes, who wants diabetes technologies and would benefit from them, should get access and get education on their best use.
What are the top three research studies JDRF is currently funding?
We fund many type 1 diabetes studies around the world. This includes treatment research, cure research and prevention research.
To firstly give a treatment example, researchers around the world began a £1.7m JDRF project to pinpoint the earliest signs of kidney disease in people with type 1.
The study, one of the largest of its kind, could lead to new ways to prevent and treat kidney disease which is thought to affect between 18 and 30 per cent of UK people with diabetes (both types). The University of Dundee is involved.
Secondly, JDRF research into preventing type 1 from developing includes the ‘MultiPepT1De’ trial which began at King’s College London in March.
Here, participants are given injections under the skin of small fragments of the protein molecules found in the beta cells of the pancreas, called peptides, to hopefully retrain the immune system.
If we can teach the immune system to stop attacking the insulin-producing beta cells in the pancreas we can potentially prevent type 1 diabetes from progressing.
Thirdly, let me give an example into research on finding the cure. JDRF funded scientists have in the past year published data showing a psoriasis drug could help keep insulin producing cells safe in people with type 1 diabetes.
The trial showed that 15 months after the last dose of the drug, people given it needed to take less daily insulin. That’s very promising.
What would your one message to healthcare professionals be?
Healthcare professionals play an utterly critical role in JDRF’s mission to create a world without type 1 diabetes. I would express my gratitude for the way they kindly introduce the recently diagnosed in their clinics to the JDRF community and support that we provide.
This support includes Type 1 Discovery Days and information packs for all aspects of life with the condition.
Do you think type 1 diabetes gets the proper priority it deserves from the government?
No, but it is improving slowly. There are some positive and exciting developments in type 1 care on the horizon.
Our report Type 1 Research Today, released in April, found that government funding for type 1 diabetes research was approaching half of the UK type 1 research portfolio. Government funding for type 1 research is still far less in comparison to other diseases and conditions.
It is great though to see that type 1 is on the national agenda. Jamie Reed MP, who spoke so eloquently at JDRF’s #Type1Catalyst event in Parliament – was spot on when he called on people with type 1 and their families to “keep rattling the bars.”
Do you think the government’s approach might change because of the Prime Minister having the condition?
Having a prime minister with type 1 is great to raise awareness and understanding of the condition. It is important to remember though that no PM can push through a personal health agenda.
The prime minister has attended JDRF events in a private capacity and we are delighted to have support in giving a voice to all with type 1 and their loved ones by politicians on all sides of the house.
Theresa May is an inspiration to some with type 1, and it was great to see her join Jamie Reed in acknowledging all who live with the condition right at the start of her first Prime Minister’s Questions.
JDRF’s strapline is “we will create a world without type 1 diabetes” – how far off is this from becoming a reality?
It is JDRF UK’s 30th anniversary this year and this causes me to reflect on the enormous amount of research progress in recent years.
I am confident we will find the cure for type 1 diabetes. There have been so many fantastic breakthroughs in type 1 diabetes research in the past couple of decades and it is now just a case of time, high quality research and continuing to fund such projects, which is only possible thanks to the generosity and commitment of our wonderful supporters.
What advice do you give to parents of children who have type 1 diabetes?
I would advise them to become well informed about current and future technologies that can help to lift the burden of living with type 1.
I would also encourage parents to relax a little. This may be controversial, but providing a child achieves a significant amount of time in range I think both the parents and the child should feel ok about the occasional high blood glucose level.
Type 1 diabetes really is a challenge to manage and no child should feel anxious about the odd high or low level. A measurement is simply one moment and provides the information and opportunity to take the next type 1 management decision better informed.
What would you do if your budget doubled?
If JDRF was successful enough to receive double its income one year, I would want to spend the additional money to drive forward research more quickly and effectively. We always receive far more high quality research applications than we can afford to fund and I would like to fund additional projects.
I would launch some prizes to encourage innovation across our research portfolio; my personal favourite would be to stimulate more applications and approaches to develop glucose responsive insulins and to ensure these become available to patients as swiftly as possible.
I would also fund more JDRF UK awards for young talent in type 1 research to help bright, young investigators develop a successful, secure career in type 1 research.
In the last decade which medical research has seen the biggest breakthrough in type 1 treatment?
There have been so many steps forward in the last decade it is difficult to choose. But something that has caused particular excitement and global headlines is work coming out of Harvard and MIT. Doug Melton – a researcher who changed his focus after his children were both diagnosed with type 1 diabetes – is doing some great work turning stem cells into insulin-producing beta cells on a large scale.
It was only in January of this year that Dr Melton and colleagues at MIT discovered these cells transplanted into mice can withstand the autoimmune attack in type 1 diabetes, which effectively halts the condition for six months.
This research will take time before it moves into human trials. But if this can be replicated it will change how somebody lives with type 1 diabetes. It is a really exciting prospect for the future.