Multi-Stakeholder Meeting on Medical Devices in Paediatric Type 1 Diabetes

On February 21, 2023, a Multi-Stakeholder meeting was held in Berlin to call for ensure access of pediatric patients to medical devices for the management of type 1 diabetes.

While in Slovakia the question of using sensors for monitoring blood sugar levels resonates the most in public discussions, top clinicians are demanding more. 

In a world where there is already clear evidence of patient health benefits and prevention of complications of this chronic disease, there is no doubt that asking for nothing less than the availability of a wide range of AID systems for diabetes management is meaningless. (you can read more about AID systems available in Slovakia in original language here).

The event was organized by the Conect 4 children network, which I wrote about in more detail in the previous article. You can find it original language here. Over 120 participants took part in the hybrid meeting, roughly half of them virtually. Between academia, industry, regulatory and political bodies, 21 patients and their caregivers also found the place here. The main panel of the morning program therefore belonged mainly to us, parents of young children, adolescents, and young adults, and our testimonies about life without and with AID systems.

Multi-Stakeholder meeting v Berlíne

The official output from the meeting will be published in a professional magazine, and after a closer processing of all the discussed questions, I will bring you the conclusions.

#dedocvoices #dedoc na Multi-Stakeholder meeting v Berlíne

Meanwhile find my speech at the beginning of morning panel: 

"I'm not a public speaker but with this invitation I understood, despite how uncomfortable I may feel, it's important to share with my voice our story. For all those families and children across Europe, that will never have the possibilities I had and might not meet their needs...if also my voice remains unheard.

Preparing my speech I was thinking how to introduce myself, in the best way, but at the end I decided there's only one, the most important things, you have to know about me. Who I am here, today.

I am only a simply mother. Of an extraordinary girl. And I want you to know her (video presentation of Miroslavas’ daughter was shared with audience)

We found out Mia has got diabetes with a check-up by her pediatrician. We noticed some symptoms and the Italian public campaign running that time on television, making evidence of disease helped us a lot, to be sensitive on those symptoms.

I was lucky, from the beginning, having support of clinicians around us, in Slovakia, and later in Italy.

When I took Mia to the hospital for diagnosis, we started with multiple daily injections. I knew that injections won't stop. Never ever. At second day she was so terrified knowing this is lifelong treatment...

I like to ask those who know more what would they do if they were me. And I like to ask doctors what would they do if it was their child or grandchild.

I was told diabetes is a very well manageable disease if you have got money. Because last years the technologies improved so much to help people manage their diabetes. The only problem is their costs. And I was told to set Mia to an insulin pump. But in the country where we lived at that time, I had to wait at least 6 months to start being eligible for the pump. I decided I don't want to wait.

I want the best therapy for my child from the first day. 

I heard in some European countries children get a pump with a diagnosis in the hospital. I tried to  contact so many of them but or we didn’t receive a reply or we received explanations why it is not possible….

Not to mention my delusions while I was trying to reach some European clinical trials or willing to donate our samples, documentation...whatever...that might be helpful for research studies how to prevent or cure diabetes...nobody was interested. And these facts let us really feel we're living in the "insignificant" country, being "insignificant", even being part of the European Union.

You might ask how that finish…

I just want to underline...all these struggles...were only the starting point...there is no prevention of type 1 diabetes...and even with the best technology and the fastest insulin there's NO CURE. These tools...are NOT leaving us to live free from diabetes.

We, adults, have learned a lot living long enough… be patient… wait for meals… change habits if necessary… even if also we, have the right to live burden free from disease… The children… they still have to deal with all the life coming while growing up ... it is our duty, as society, to protect their rights, to guarantee their access to healthcare and the best therapy the world can offer, despite how small they are, their age, the country, social status or any kind of discrimination (where also good compensation numbers belong)...because one day...not so far in the future...we will all depend on their well-being." (the second video presentation of Miroslavas'daughter was shared with the audience; find last slide here):

Find Slovak version here