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“The best is yet to come” – diabetes impact event report

This report is a summary of an IMI-hosted event called IMI Impact on diabetes, part of a series of events intended to showcase the successes of projects launched since the programme’s inception in 2008. Held online in June 2021, the Impact on diabetes event brought together people involved in IMI-funded diabetes research, whether as people living with the disease, researchers in projects from academia, project partners from the industry sectors (pharma in particular), or others involved in the strategic direction of IMI.

Image by nito via Shutterstock
Image by nito via Shutterstock

Patients, citizens come first

Advocate and long-time INNODIA project collaborator Veerle Vanhuyse, who lives with diabetes, opened the session with the moving story of being diagnosed with type 1 diabetes in 1987, on her 16th birthday. Commenting on the lack of understanding of the disease at the time, she said she found out quickly that education is a key and in fact lifesaving component of diabetes care. Since then, education has improved, and the choice of devices has expanded. However, despite advancements in devices, education, peer support, and the internet, diabetes is still challenging and stressful: “a full time job and a life-long condition with no days off,” she said, emphasising the mental health stresses involved.

Thanks to INNODIA, Ms Vanhuyse said every day she gets to see thousands of experts working together to tackle this illness, doing research, trying to find out as much as they can about the disease, looking for personalised treatment, and in the long-term trying to find a cure. It is “heart-warming and encouraging”, she said, to witness the efforts and progression and she is certain one day that type 1 diabetes will be cured. She spoke of her role in the small but essential part of INNODIA, the Patient Advisory Committee, a group of people living with diabetes and their close relatives who are “determined to guarantee that the needs and concerns of patients remain at the centre of the INNODIA project.”

Ken Tait, a psychotherapist and patient advocate living with type 2 diabetes, echoed Ms Vanhuyse’s despair, describing his experience as “isolated, fearful and struggling”. He called for more understanding of the disease, saying that stakeholders need to work on it together. He likes participating in IMI because it makes sense for them to be working with the people doing the research. “This needs to happen much more.”

How the IMI partnerships are already moving the needle

Dr Chantal Mathieu opened by showing a picture of a mother carrying a dying child taken 100 years ago. “That was what type diabetes was back then – it was a death sentence,” she said, until in 1922 when, for the first time, a child with type 1 diabetes received insulin, turning it into a chronic disease. It still, however, “knocks many years off your life”, Dr Mathieu told the audience, and through the INNODIA and INNODIA HARVEST projects, they have an ambitious mission - to find a total and final cure.

Dr Mathieu described the European infrastructure and network that they are building and specifically their mission to discover new biomarkers. “We only get diagnosis when hypoglycaemia is there, but we know that years before that the disease is already ongoing, so figuring out who will get it is a big effort of INNODIA,” she said. “We also want better clinical trial design,” she said. Both INNODIA projects are currently running clinical trials, both according to the team’s regulator-approved master protocol, and they have so far recruited thousands of people, many newly-diagnosed.

She commended the big effort to collaborate in IMI projects, with “everyone working together in networked way, bringing the precious data and samples.”  There are millions of databases coming together in one big database, she said, adding “you will see big things coming out in the years to come.”

“We are lucky to have a public-private partnership, said Dr Mathieu, not just industry, but bodies like the JDRF and the Helmsley Trust.  "Having them in our team is crucial. At the centre we have put the people living with the disease." It’s a humbling experience, she said, coordinating the network.

Dr Maria Gomez, from Lund university, leads the project BEAT-DKD. She spoke of highlights from the IMI diabetes portfolio that she has been involved in, including IMMIDIA, SUMMIT, DIRECT, RHAPDOSDY and SOPHIA. She reminded the audience that IMI is about acceleration, about speeding up patient access to novel innovations. She praised the power of public-private partnerships in diabetes research, saying that the consortia would not have achieved what they achieved otherwise.

“It is the perfect forum for creating a place where we can talk, without worrying about intellectual property or patents. We all benefit from the conversations and as long as we were able to make clear: what’s in it for me,” she said. She praised the projects’ ability to make all stakeholders pull in the same direction, and the level of complementarity in the different areas.

“Thanks to the IMI projects there is a change in the way we work, and in the way we can do things faster,” she said, adding that the citation impact is twice the world average and significantly higher than the EU average. “That tells you that the work being done by IMI projects is being appreciated by peers, it’s cited, it’s used, it’s generating value.” Finally, she echoed calls for more patient involvement, suggesting another ‘p’ could be added to the concept of a PPP – the patient.

Dr Emma Vahlqvist, from Lund University diabetes centre, spoke about a RHAPSODY study that has gained a lot of attention that discovered five different subtypes of diabetes,  which is “a bit of an oversimplification, though the future will tell.”

Finally, Eduard Montanya from the University of Barcelona closed by saying that it’s important that IMI chose diabetes for one of these impact event sessions – not just because of the great portfolio but also because of the extreme importance of diabetes, which he described as a health emergency. He spoke of the importance of the PPP as something unique that has all the relevant stakeholders in a way that has never been done before. “The achievements are very clear,” he said.

Highlighting a disparity with other diseases, he mentions that 50 percent of cancers can be cured, but a case of diabetes has yet to be cured. As an example of how cross-cutting the disease can be, he noted that people with diabetes who catch COVID, for example, do worse: “It has effects on other diseases and should not be diluted – it needs a different approach.” He finished by encouraging everyone to be vocal about the fact that diabetes is underfunded in research – “the unmet needs are very clear.”  He also concluded by agreeing with his co-panellists that the patient’s voice is essential.

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