On February 21, 2023, a multi-stakeholder meeting was held in Berlin to ensure access to medical devices for the management of type 1 diabetes in pediatric patients.
While in Slovakia, public debates primarily focus on the use of sensors to monitor blood sugar levels, high-level clinicians demand more.
In a world where there is already clear evidence of the health benefits and prevention of complications associated with this chronic disease, there is no doubt that advocating for the availability of a wide range of Artificial Pancreas Systems (APS) for diabetes management makes more sense. (You can read more about the available APS in Slovakia in the original language here).
The event was organized by the Conect 4 Children network, which I extensively covered in a previous article. You can find it in the original language here. Over 120 people participated in the hybrid meeting, with approximately half attending virtually. The attendees included academics, industry representatives, regulatory bodies, politicians, as well as 21 individuals with type 1 diabetes and their caregivers. The morning session of the program primarily focused on parents of young children, teenagers, and young adults, along with their testimonials about life with and without APS.
#dedocvoices in Berlin
The official report of the meeting will be published in a professional journal.
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):
From Italy, Elena Frattolin and Andrea Scaramuzza, among others, also participated, well-known in the community. You will find Elena Frattolin’s posts related to the meeting here and also here.
I want to thank Maren Sturny for the exceptional organization on behalf of DedocVoices and for involving me and extraordinary voices like Elena Frattolin, Emeline Munoz, Jean Langford, Zuzanna Burzynska, and others. Special thanks, I believe from all of us, also go to Maria Cavaller and Andrea Demadonna for all the support provided in the preparation and execution, including the technical part.
The presentations and recordings, with prior consent, including the recording of my speech, which includes photos and videos of my child, have been shared with all the meeting participants. We eagerly await the forthcoming official publication in the professional journal.
#type1dmaniac 