Multi - Stakeholder meeting o medicínskych pomôckach v pediatrii pre diabetes typu 1

21. februára 2023 sa v Berlíne uskutočnilo Stretnutie viacerých zainteresovaných strán, s cieľom zabezpečiť prístup pediatrickým pacientom k medicínskym zariadeniam pre manažment diabetu typ 1.

Zatiaľ čo na Slovensku ešte stále najviac v diskusiách vo verejnom priestore rezonuje najmä otázka používania senzorov pre monitoring hladiny cukru v krvi, špičkoví klinickí pracovníci žiadajú viac. Vo svete, kde už dnes existuje jasná evidencia o benefitoch pre zdravie pacientov a predchádzanie komplikáciám tohto chronického ochorenia, niet pochýb o tom, že žiadať nič menej ako dostupnosť širokého spektra AID systémov pre riadenie diabetu, nemá význam. (viac o AID systémoch si môžete prečítať v článku tu). 

Podujatie zastrešila sieť Conect 4 children, o ktorej som bližšie písala v predchádzajúcom článku. Nájdete ho tu. Hybridného stretnutia sa zúčastnilo cez 120 účastníkov, z toho zhruba polovica virtuálne. Medzi akademickou obcou, priemyslom, regulačnými a politickými orgánmi, našlo svoje miesto aj 21 pacientov alebo ich opatrovníkov. Hlavný panel dopoludňajšieho programu tak patril najmä nám, rodičom malých detí, adolescentom, aj mladým dospelým, a našim svedectvám o živote bez a s AID systémami. 

Multi-Stakeholder meeting v Berlíne

Oficiálny výstup zo stretnutia bude zverejnený v odbornom časopise a po bližšom spracovaní všetkých diskutovaných otázkach vám prinesiem závery aj v slovenčine.

#dedocvoices #dedoc na Multi-Stakeholder meeting v Berlíne

Zatiaľ vám prinášam aspoň prepis môjho úvodného vystúpenia v pôvodnom znení, (neskôr priložím preklad): 

"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):