Mom of Little Looper at #ISPAD2022

I was walking through Abu Dhabi National Exhibition Centre where over 1.000 doctors, psychologists, dietitians and nurses from over 80 countries held 48th Annual Conference of the International Society for Pediatric and Adolescent Diabetes (ISPAD). 

This time was a special one. Society initiated originally by physicians willing to include prospectives of diabetes nurse specialists, psychologists, dietitians now opened to Patients advocates as well. 

That's why I was present there. Thanks to advocating revolutionary program of scholarship invented by Bastian Hauck founder of Diabetes online community #dedoc.

 

And I really felt it was a place where I belong to. Not just because of warm words of welcome by Carine de Beaufort, ISPAD president, on our #dedoc symposium there. Because of impact, partnership and interests felt by professionals and excellent minds of researchers there. Amazing to experience being a part of stakeholders group, not like nurse by study profession, on my way to certified diabetic educator, but as mother of 6 years old girl living with 1.

Miroslava Calegari, ISPAD 2022

Then the message arrived: "Tell them you are a Looper!!!! 😂😂😂🙈🙈🙈 They immediately kick you out of the Conference!"

At that moment I had no idea what will happen on Sunday, at the last session, just before Closing ceremony of ISPAD 2022...I smiled fleetingly. Honestly, being Looper present at ISPAD was one of my biggest motivations. I never met other living iOS Looper using freeAPS in person before me.

Lenka Petruzelkova, Miroslava Calegari

I just finished "Pancreas4ALL" presentation by Lenka Petruzelkova, Department of Pediatrics, Motol University Hospital and 2nd Faculty of Medicine, Charles University in Prague, Czech republic. Her non-profit involvement in Open source Automated Insulin delivery for kids and adolescent living with type 1 in Czech republic is really admirable. As Lenka presented in discussion with other professionals, she is lucky to have Milos close to her. Milos Kozak is a father of girl living with diabetes, invented AAPS inspired by Dana M. Lewis/ S. Leibrand OpenAPS. AAPS is widely used by Android users in many European countries nowadays.

But I would say, not just dr. Petruzelkova but we, open community, are lucky there are healthcare providers like her, involved, by belief or personal experience. And Lenka presented some of studies done, with adults, adolescents and children on behalf of safety and efficacy of Open AID systems.

Surely interesting are the highlights of a study of "Full Closed Loop" with unannounced meal realized, too.

Coming to conclusions dr. Petruzelkova mentioned Consensus statement and practical guidance for health-care professionals published at Lancet last year and expressed her wish/question/call for cooperation. Could be the exchange platform for HCP and PwD communities or conversion to Official app the future in t1d personalized disease management?

The message arrived while I was walking out the hall where I expressed my words of deepest gratitude to Lenka and doctors like her. And I am grateful to my daughter pediatrician diabetologist I never had to hide what kind of system I choosed for my daughters' t1d management. In Slovakia and nor in Italy. Being open to healthcare provider shouldn't be a privilege of few. And I am happy the things are changing towards better also for the others.

I was proud on my public "Looper coming out" in front of all healthcare professionals, from parent position. Nobody kicked me out. And do you know what? Just 2 days later, at ATTD-ISPAD Symposium, I could say again in microphone how extremely important for us, parents, is breaking tabu on Open source Automated Insulin Delivery usage, when speaking about children t1d management. Tadej Battelino, turned to me, but it was a message to those brilliant minds of our community, most of them parents of t1d kids like me or t1d themselves, I will stay forever grateful: "I very much agree with you. We are learning and you know if companies were very clever probably they should learn from you as well...because the cycle of innovation is so much faster..."

It was Joint Symposium ATTD-ISPAD: Advanced Technology in Diabetes Care, on Sunday 16th October, where Katarina Braune (Charité – Universitätsmedizin Berlin, Berlin Institute of Health, Germany) lighted me up with her excellent "self-presentation". Katarina is not just Pediatrician, Diabetologist, Digital Clinician Scientist but she is living with t1d and using Loop - Open source AID system herself.

Instead of hiding the evidence or pushing back to settled current frameworks, she came with topic to question: How can HCP assist people that choose to use DIY? Katarina is co-founder of OPEN project EU-funded research led by, with and for people with t1d diabetes.

Research, as pointed out, is studying WeAreNotWaiting phenomenon. Phenomenon and movement of patient community creating their own AID systems. "And because it was working so well for them and because it was so life changing for them and their children they decided they want to make this open source available for everyone."

She followed with Thomas S.J.Grabtree survey of UK Healthcare Professional Attitudes Towards Open-Source Automated Insulin Delivery Systems as this comes understandably with all uncertainty around legal framework. 91% of respondents felt uncomfortable initiating discussion because of lack approval/regulations (67%) and lack of their knowledge (63%). While 43% percept it "risky in the wrong hands" 47% reported they would choose open-source AID if they themselves had T1D. 

Katarina is one of the co-authors of Common Consensus Statement, mentioned previously also by Lenka Patruzelkova, published at Lancet, last year.  The paper is a common outline of 44 HCPs and 4 experts in medical law coming from  25 different countries around the globe.  Bellow you can see the diabetes organisations supported this project as well.

Among conclusions of the paper Open-source AID systems results safe and effective treatment option in various age groups, genders, and socioeconomic communities.  Dr. Braune summarized all of the evidence that is clearly out there. Open source AID systems were tested in silico, in swine, in the real world - in little ones, in older ones, in qualitative research, it has been studied in systematic reviews and then there are also clinical trials. 

Open source AID system have the potential to help a wide population of PwD alongside commercial AID systems. One of the fundamental practical, legal and ethical tenets of medicine includes supporting the right of PwD or their caregivers' informed decisions about their own medical care. Furthermore they states as HCP responsibility to learn about all treatments options, educate people with diabetes on availability and existing evidence, if the potential risks and benefits are clearly explained. As mentioned already before by others, also Common consensus encourage HCPs to cooperate or referral to others HCPs who can provide support for this aspect. What OPEN project calls for is Transparency in AID technology. All AID systems, including commercial ones, should fully disclose how they operate to enable HCPs, PwD and caregivers to make informed decisions, understand limitations and benefits of all AID systems. This comes belong side to ensure open access to all health data all the time in real-time for all users of CGM. When making informed decision we should consider all risks and benefits and this includes open source AID.

As for every AID systems it is really important to set realistic expectations. Safety comes first. Among the last but not least points was that Consensus doesn't recommend to any HCP to violate local law and organisational governance.  "However if ethical and effective treatment is either deemed unlawful or occupies un uncertain and problematic regulatory position, then the regional policies should be clarified. We encourage the authorities and representative organisations of health-care professionals to help to apply professional consensus and evidence to update legal interpretations and frameworks." 

Real world experience should be considered by device regulators and valued true user experience. 

"I wouldn't know any AID systems out there that has been tested so extensively and documented well by research. So please, use all the resources and help all your people living with diabetes to stay as safe as possible." said Katarina Braune at the end. She didn't miss to congratulate ISPAD that was the first conference who adopted #dedocvoices as Patients Advocates at the Conference not only at audience but at the stage. Involving PwD in all of their guidelines. 

At the time of A&Q doctor Jamie from Ohaio asked Katarina how can the Open source DIY Community to reach out healthcare professionals? To be more comfortable and do feel more safe and confident in giving advice to people living with diabetes.  The DIY community is really big now. And so enthusiastic on spreading the word and helping others. There are resources that summarize everything like Loop and Learn Community. They do talks where they invite people involved in AID research also from the commercial world and academia to foster this dialogue. And all of those videos are being recorded and online. The Community is really responsive and if don't want to go in social media there are actually so many doctor-patients hybrids, like Katarina herself, that are more than willing to help. "Just reach out us and we are able to connect with whatever question you have."

Tadej Batellino joined the conversation as HCP with the fact that people using DIY system at their centre are helping them to download the system into their electronic medical record. And show them Nightscout, how to do it. The records that are finally very comparable to those that in commercial products. And they also volunteered to have presentation on their national meeting at the end of November. They will present the data and explain how and what they do. In the Batellino opinion, this is the best way to do. He added "Obviously these people are knowledgeable,  this is not everyone can do. They are very knowledgeable and they do very well." 

There were other Open source AID systems users and doctors joining the conversation and it was really amazing feeling for me to witness the impact of my community at the place. I went back to the message I received from my husband on Thursday...smiled fleetingly and knew this will no more be the case! 😊

 

After my words of parent using Open source AID for my 6 y.o. child, to present audience and speakers, Kate Gajewska pointed out important thing. Many countries will not have access to official Automated Insulin delivery systems. Even in Poland, her home country you have to pay for commercial insulin delivery automated system. And it's very expensive. And I remembered my case after Mia was diagnosed last February 2021 in Slovakia. I remembered all research I've done. Centers in Slovenia, Czech, Italy, Belgium I've contacted in order to get her the best care I could and the smoothest beginning of the life-way we had to take together...I remembered the hope and delusions, too. Loneliness and then becoming decisive and brave. And I remembered the moment sitting at the chair in the doctors office... writing on the paper the word neither she knew exactly what it was... L O O P. And then later on... I found my tribe 😍. But this is another story...

It was Sunday, 16th of October, at ADNEC Joint Symposium ATTD-ISPAD when Tadej Batellino said:

I have short story for you for the conclusion of this session. When I was young, some time ago, I had a small motorbike. That only had 3 shifts and didn't go faster than 50km/h. And I learned on the street that there is a way to upgrade this motorbike with another shift and couple of little changes and then it goes 70km/h. And this is what I did. It was illegal. It was not approved. Not tested right but my little motorbike did go 70km/h. So I think it's only natural that people try to innovate, be better and more successful. Particularly if there's a serious chronic disease in question...I suggest collaboration and cooperation between all that have interests in improving this disease and with joint forces I am sure we can do it faster...so thank you #diy community and please, help us all, that every person with diabetes has a better chance to stay as close to the normal range as possible.

Miroslava Calegari, Katarina Braune, J.J. Lu Co

Please, read DISCLAIMER

If the world of diabetes touches you personally, please remember that this blog does not provide medical advice and recommendations on how you should manage this chronic incurable disease.

Every diabetes is unique. There is no universal best treatment, best technology, best approach. Always consult with a qualified health care provider for the management of your or your child's specific case of diabetes.