Author: Beta Change

Overcoming Challenges with Diabetes – by Kamila

This year marks sixteen years since I was diagnosed with diabetes. I am now 32 years old, a teacher, the editor of Diastyl magazine – my country’s only diabetes magazine published by the IDF member organization VAZ Diabetiku Ceské Republiky – and above all, the mother of a two-year-old son. 

I still remember the day I was diagnosed with diabetes. I hadn’t felt well in a long time because I had mononucleosis. I was hospitalized with a lot of sugar in my urine. I still remember that feeling; someone made a mistake, I thought…I don’t have diabetes, maybe someone else has it, but not me. I was absolutely convinced that the doctors were wrong – I even literally kicked the diabetes educator out of my hospital room, saying that I definitely didn’t have diabetes!  

Well, it turned out that I did actually have diabetes and the diabetes educator came back the next day to try again. 

I also remember feeling different and weird compared to my peers; I didn’t know anyone with diabetes and I had no one to share my experiences with. But a lot has changed since then; I have met a lot of great people with diabetes and I am grateful to be able to help organize various projects. For eight years I have been a leader at camps for children with diabetes. That’s where I met a number of friends and, best of all, where I met my wonderful husband, who also has diabetes. I also run Diastyl magazine, which deals with the lives and treatment of people with diabetes. It’s great to be part of a worldwide family!

I was also allowed to become a Young Leader in Diabetes (YLD), representing the Czech Republic in the International Diabetes Federation (IDF) World Diabetes Congress training program. I completed my training in Vancouver, Canada and I am very grateful for this opportunity. It was great to meet young people with diabetes from all over the world; I remember it very much and to this day, I stay in touch with the friends I made. I also took part in a European camp in Cyprus and I still like to remember the friendly atmosphere full of interesting and creative ideas! I would like to thank the IDF for providing these opportunities, and all those involved in organizing and promoting similar activities. It is so important that we meet and share our experiences and ideas!

Living with diabetes is not easy, but I am very happy to live in the Czech Republic. I don’t have to pay for insulin or other devices such as insulin pumps, syringes, glucometers, etc. In the Czech Republic, we have access to the latest equipment and technology to manage diabetes. Since last year, we can use up to 24 CGM sensors per year for free. I am very sorry that not all people with diabetes have the same access to insulin and advanced or basic treatment. This is an unfortunate reality. Diabetes treatment should not be affected by where a person lives or how much money they have! 

I often think about what diabetes took from me. I have lost some freedom because I will never go without insulin and my insulin pump again, I will always have to think about the food I eat, and I need to be prepared to experience hypoglycemia. I will never be able to fast all day, regardless of my blood glucose. I will always have to pack all of my diabetes supplies into my purse or suitcase. I will never buy a mini handbag again, because I need to carry enough things with me to manage my diabetes 🙂

Still, I feel like diabetes has given me more things than it has taken away. Thanks to diabetes, I met many new friends both in the Czech Republic and around the world. Thanks to diabetes, I can help in camps for children with diabetes and participate in a number of interesting projects. One that I care very much about is a project I am involved with together with my boss and team. We organized an event for young people with diabetes aged 18 to 30 years where we talked about things like sex and diabetes, alcohol and diabetes, or diabetes and pregnancy with input from doctors and psychologists. I believe that sharing experiences between people with diabetes is very important and beneficial – for instance, since not everyone has a husband who also has diabetes, we talk about relationships and when and how to tell our partners we have diabetes. 

Diabetes is actually such a challenge for me. For example, I had to figure out where to hide an insulin pump on my wedding day and how to handle pregnancy and childbirth. I also challenge myself to make the most of living with diabetes and I have learned a lot through adventures like trips in the mountains with a backpack on my back. Diabetes has also taught me more tolerance for others and for myself because it teaches me to appreciate the good things in life…as we say in the Czech Republic, if it’s not about living, it’s about all the shit that happens! 

Přečtěte si pohlednici v češtině:

Letos uplyne už šestnáct let od chvíle, kdy mi byla diagnostikována cukrovka. Je mi 32 let, jsem učitelkou, redaktorkou časopisu Diastyl, jediného časopisu o cukrovce v mé zemi, a především jsem matkou dvouletého syna.

Stále si pamatuji na den, kdy mi byl diabetes diagnostikován. Tehdy jsem se už delší dobu necítila dobře, protože jsem onemocněla mononukleózou. Byl jsem hospitalizována kvůli tomu, že jsem měla zvýšený cukr v moči. Dobře si pamatuji na svůj tehdejší pocit: někdo udělal chybu, říkala jsem si …Já nemám cukrovku, možná ji má někdo jiný, ale já ne. Byla jsem absolutně přesvědčena, že se lékaři zmýlili – dokonce jsem doslova vyhodila edukační sestru z mého nemocničního pokoje s tím, že já rozhodně nemám cukrovku a edukovat nepotřebuji!

Samozřejmě se ukázalo, že mám diabetes a edukační sestra se druhý den opět vrátila zpátky.

Také si pamatuji, jak jsem se tehdy mezi svými vrtevníky cítila – tak nějak divně a prostě jinak; Neznala jsem tehdy nikoho s diabetem a neměla jsem tedy s kým sdílet své zkušenosti. Od té doby se ale hodně změnilo: potkala jsem spoustu skvělých lidí s cukrovkou a jsem vděčná za to, že mohu pomáhat s organizací různých projektů. Osm let jezdím jako oddílová vedoucí na tábory pro děti s diabetem. Tam jsem potkala řadu přátel a také svého manžela, který má rovněž cukrovku. Pomáhám také s vydáváním časopisu Diastyl, který přináší informace o životě s diabetem.

Také mi bylo umožněno stát se Young Leader in Diabetes (YLD) a zastupovat Českou republiku ve vzdělávacím programu IDF na světovém kongresu Mezinárodní diabetické organizace. Absolvovala jsem výcvik v kanadském Vancouveru a jsem za tuto příležitost velmi vděčná. Bylo skvělé setkat se s mladými diabetiky z celého světa; Ráda na to vzpomínám a dodnes zůstávám s některými z nich v kontaktu. Také jsem se zúčastnila tábora IDF pro zástupce evropských diabetiků na Kypru a často ráda vzpomínám na přátelskou atmosféru plnou zajímavých a kreativních nápadů! Ráda bych IDF a všem, kteří se podílejí na organizování a propagaci podobných aktivit, poděkovala za tyto skvělé příležitosti. Je tak důležité, abychom se jako diabetici setkávali a mohli sdílet své zkušenosti a nápady!

Život s diabetem není snadný, ale jsem velmi šťastná, že žiji v České republice. Nemusím platit za inzulín nebo jiné pomůcky, jako jsou inzulínové pumpy, glukometry atd. V České republice máme přístup k nejnovějšímu vybavení a technologii pro léčbu cukrovky: od loňského roku můžeme používat až 24 senzorů (v mém případě G5) ročně zdarma. Je mi velmi líto, že ne všichni diabetici mají stejný přístup k inzulínu a pokročilé nebo základní léčbě cukrovky. To je ovšem smutná realita. Léčba diabetu by neměla být ovlivněna tím, kde člověk žije nebo kolik peněz má!

Občas přemýšlím o tom, co mi cukrovka vzala. Ztratila jsem určitou míru své svobody, protože se už nikdy neobejdu bez inzulinu a inzulinové pumpy, vždy budu muset přemýšlet o tom, co jím, a musím být neustále připravena na hrozící hypoglykemii. Nikdy se nebudu moci celý den postit bez starostí o svou glykémii. Vždy bude mé zavazadlo kvůli kompenzačním pomůckám, jako jsou sety či zásobníky a sladkosti na hypo, těžší a větší, než kufry ostatních cestujících. Už si nikdy pravděpodobně nekoupím malou kabelku nebo psaníčko k šatům, protože s sebou neustále nosím spoustu dia-věcí.

Přesto mám pocit, že mi cukrovka více věcí dala, než vzala. Díky cukrovce jsem potkala mnoho nových přátel jak v České republice, tak po celém světě. Kvůli diabetu mohu pomáhat v táborech pro děti s cukrovkou a účastnit se řady zajímavých projektů. Pomáhala jsem například organizovat akci pro mladé lidi s diabetem ve věku od 18 do 30 let, kde jsme mluvili mimo jiné o různých “tabu” tématech jako je cukrovka a alkohol či diabetes a sex. Řešilo se také téma těhotenství při diabetu 1. typu. Akce se vedle lékařky účastnila také psycholožka a výživová poradkyně. Věřím, že sdílení zkušeností mezi lidmi s diabetem je velmi důležité a přínosné.

Cukrovka pro mě vlastně často představuje takovou výzvu. Například když jsem během svého svatebního dne musela přijít na to, kam schovat inzulínovou pumpu nebo když jsem řešila, jak zvládnout těhotenství a porod s čím jak nejlepší kompenzací. Snažím se žít aktivní život s diabetem a plnit různé výzvy, jako jsou například výlety do hor s batohem na zádech. Cukrovka mě také naučila větší toleranci vůči ostatním a vůči sobě samé. Díky nemoci se snažím svou energii věnovat především důležitým věcem a zbytečně neprožívat nepodstatné věci… protože jak se říká – když nejde o život, jde o hovno…

Diabetes Care During COVID Times – by the Diabetes Community Care Team

The Diabetes Community Care Team (DCCT) is a nonprofit, pharmacist-operated diabetes clinic which increases opportunities for people living with diabetes to access medical care and education. Our Mission is to help people with all types of diabetes manage the challenges of living with a chronic disease and mitigate barriers to care including financial, psychological, and medical. While we hope that one day diabetes can be cured and/or eliminated, our vision is to ensure ongoing community access to quality diabetes treatment, education, care, and management regardless of financial or insurance status now and in the future. While COVID-19 has presented numerous challenges, not least of which is keeping our at-risk clientele safe, we are rising to the challenges and have been able to offer significant help to those impacted by the health crisis and to the victims of the recent Oregon wildfires.

Julie Dewsnup is not only the founder and Executive Director of DCCT, she’s also a pharmacist and recognized diabetes educator

During these difficult times, our services are more critical to our community than ever. In addition to our billable services like Diabetes Education and full-service pharmacy, we offer our current and future clients the use of our Charitable Pharmacy, where we work specifically with uninsured patients to ensure they are still able to receive quality care when it comes to managing diabetes. Given that the current American Health system often ties health care and insurance with employment, many Americans are losing or have lost their health benefits as the direct result of the COVID-19 pandemic decimating the job markets. All medications used by our Charitable Pharmacy are the direct result of generous donations by local and regions healthcare facilities and long-term residences as well as the outcomes of a generous grant from the PacificSource Foundation for Health Improvement and United Way of Lane County made specifically for the purchase of diabetic medications. Furthermore, we are also staffed with pharmacists, all of whom generously donate their time and expertise, that are also trained to specifically address the particular needs of both people with type 1 and type 2 diabetes.

Pharmacists Molly Bloom and John Marvin show off their pandemic savoir flair

We also offer a free mentorship program (BETA – Buddies Empower Teach Achieve) for children who may also be struggling with their type 1 diagnoses and who may benefit from the experience of being paired with college students, all of whom have been trained as diabetes paraprofessionals and who also live with type 1. Led by intern Adriana Wisniewski, a student at the University of Oregon, this mentorship program is in the process of a successful transition to a virtual format in order to keep the support system in place for our BETA mentors and mentees alike.

For more information about Diabetes Community Care Team or how you can help, please visit www.dcct.life.

Dear friend, I will keep fighting for you – by Adrianna

Dear Friend, 

I am writing this letter because I don’t feel ok about the injustice in this world and that my life is easier than yours. How is this, you ask? 

We were both diagnosed 10 years ago with type 1 diabetes in Poland, our home country. We were 17 at the time. I remember when doctors told us that our lives will be different from now on and we will need to take insulin. We didn’t really know much about insulin but after our first visit to a pharmacy, we learnt that we needed to pay for it. Our families had to pay for insulin, test strips, glucose tablets. Doctors told us that diabetes care is partially reimbursed in Poland – but soon we would turn 18 and life would be difficult. 

I remember the sad face of our mums when they would come back from pharmacies complaining that the new (at that time) 24h long-acting insulin – like Lantus – cost €40 per month and was not reimbursed. And then we learnt that if we wanted to have an insulin pump with a CGM integration (a 30-minute automatic hypo stop system) we would have to pay outright for it and it wouldn’t be covered. 

Just before my 18th birthday, I managed to get an insulin pump. You wanted it too, but doctors said that you were still in your honeymoon phase so you didn’t need multiple daily injections yet or a pump. Then, 4 months after our birthdays, your honeymoon period was over and you were no longer qualified for an insulin pump. 

We both started university at the same time. I got the chance to move to France to continue my education. You stayed in Poland because a new law was introduced that granted reimbursement for insulin pumps for people up to 26 years old. 

I started to live and work in France. I remember celebrating my 26th birthday and thinking about how your access to CGM and other supplies would change on your 26th birthday. I knew you would have to pay 100% of the price of any available CGM in Poland. Infusion sets for your pump are only 70% reimbursed for you, and if your pump breaks when it’s no longer covered under warranty coverage, you would have to pay for a new one from your pocket. 

That is probably the scariest part of living with type 1 diabetes in Poland. Life gets so difficult when you celebrate your 26th birthday. Not all young people have a well-paid job at this point in their lives. Fewer can spend around €250 each month for the diabetes supplies. 

In France, I stopped thinking about the cost of diabetes because I have insurance now. I have my insulin fully reimbursed, I don’t pay a cent for my test strips or glucagon. I don’t have to pay for my Libre Sensors and I know that some CGMs are reimbursed for patients too. But that’s not all: I also don’t pay for my checkups with the endocrinologist. Every 3 months I can go to a podiatrist who takes care of my feet and to a dentist with basic care being reimbursed for me. In France, I am considered as a vulnerable person and I receive a letter that gives me the priority over others to get a flu shot for free. 

But all of this is not the best part of living in France with diabetes – the best part is the insulin pump. This device is reimbursed for all people with type 1 and we can update our choice of pump every four years, no matter if we are 27 or 67 years old. Special delivery services bring me all the supplies I need every three months. I receive infusions sets whenever I need them, and reservoirs, some alcohol wipes, and even batteries for my pump or other stuff to help me take care of my diabetes without any stress. 

When I think about how the reimbursement system in Poland compares to the more manageable one in France, I feel that the situation is very unjust. I consider myself very lucky, but I also feel bad that I am able to benefit from France’s care programme and you aren’t. I am sad that I can just open another box of CGM sensors without researching how to extend it. While you need to carefully plan out your supplies and manage your diabetes budget. Of course, we can always say that other people have worse conditions of living with diabetes than either of us, but I know how helpful it would be for you and other people in Poland to pay less and have better access to diabetes technology. 

I am sad, but I promise you I will engage in every fight out there to bring a better diabetes reimbursement system to Poland, and by sharing our story. I will support you and our friends with all my heart. I hope that someday I will proudly say that Poland has the same standards as France. 

All the best, 
Adrianna

Follow Adrianna on Instagram: @idiabetic_cukrzyk

Przeczytaj historię w języku polskim:

Drogi przyjacielu,

Piszę do Ciebie ten list, ponieważ nie czuję się z tym dobrze, że moje życie z cukrzycą jest łatwiejsze niż twoje. To jest niesprawiedliwe. Dlaczego?

Pamiętam jak 10 lat temu zdiagnozowano u nas cukrzycę typu 1. To było w Polsce, naszej ojczyźnie. Oboje mieliśmy wtedy 17 lat. Pamiętam, jak lekarze powiedzieli nam, że od teraz nasze życie będzie inne i będziemy musieli przyjmować insulinę. Ani Ty, ani ja, nie wiedzieliśmy zbyt wiele o cukrzycy czy insulinie, ale po naszej pierwszej wizycie w aptece dowiedzieliśmy się, że będziemy musieli za nią zapłacić. Nasze rodziny musiały płacić za insulinę, paski testowe, tabletki z glukozą. Lekarze powiedzieli nam, że opieka diabetologiczna jest częściowo refundowana i powiedzieli nam, że powinniśmy się spieszyć, ponieważ wkrótce będziemy mieć 18 lat i życie będzie trudne. 

Pamiętam smutne miny naszych mam, które wracały z aptek, narzekając, że nowa (wówczas) działająca 24 godziny insulina, kosztuje około 40 euro i nie jest refundowana. A potem dowiedzieliśmy się, że gdybyśmy chcieli mieć pompę insulinową z 30-minutowym systemem hipo blokady, musielibyśmy zapłacić z własnej kieszeni. 

Tuż przed moimi 18. urodzinami udało mnie udało się zdobyć pompę insulinową z refundacji. Pamiętam, że Ty też chciałeś mieć pompę, ale lekarze powiedzieli, że nadal jesteś w okresie remisji, w którym nie potrzebujesz wielu bolusów dziennie i pompa nie jest Ci tak bardzo potrzebna. 4 miesiące po Twoich 18 urodzinach Twoja remisja się skończyła, ale Ty nie kwalifikowałeś się już do pompy insulinowej.

Oboje rozpoczęliśmy studia, po pewnym czasie ja miałam szansę przenieść się do Francji, aby kontynuować naukę. Ty zostałeś w Polsce, ponieważ wprowadzono nowe prawo i refundowano pompy insulinowe osobom do 26 roku życia.

Jakiś czas później ja osiadłam na stałe we Francji. Pamiętam, jak obchodziłam 26. urodziny i myślałam o Tobie… Wiedziałam, że Ty mając 26 lat, będziesz musiał zapłacić 100% ceny każdego dostępnego systemu CGM dostępnego w Polsce. Koszty zestawów infuzyjnych są refundowane tylko w 70%, a jeśli pompa się zepsuje po gwarancji, musisz zapłacić za nową z własnej kieszeni. To chyba najstraszniejsza część bycia cukrzykiem typu 1 w Polsce. Życie staje się takie trudne, kiedy świętujesz 26 urodziny. Nie wszyscy młodzi ludzie mają na tym etapie życia dobrze płatną pracę. Właściwie niewiele osób ma, a zdecydowana mniejszość może wydawać około 250 euro miesięcznie na cukrzycę.

Odkąd jestem we Francji i jestem tu ubezpieczona, przestałam myśleć o kosztach cukrzycy. Mam zupełnie za darmo insulinę, nie płacę ani centa za paski testowe ani glukagon. Moje sensory Freestyle Libre są za darmo dla cukrzyków i wiem, że niektóre CGM są refundowane także dla pacjentów. Ale to nie wszystko. Ponieważ jestem “ przewlekle chora”, nie płacę za wizyty u diabetologa. Co 3 miesiące mogę udać się do podologa, który zajmie się moimi stopami i do dentysty, na którego otrzymam zwrot kosztów podstawowej opieki. We Francji mam status choroby przewlekłej (nie jest to orzeczenie o niepełnosprawności) i otrzymuję specjalne zaświadczenie, które daje mi pierwszeństwo, aby otrzymać darmową szczepionkę przeciw grypie. 

Ale to ciągle nie jest najlepsza część życia z cukrzycą we Francji. Najlepsza część to pompa insulinowa. Jest refundowana dla wszystkich cukrzyków typu 1 i mogą wymieniać pompę co cztery lata, nawet jeśli mają 27 czy 67 lat. Specjalna firma medyczna dostarcza pod moje drzwi wszystko, czego potrzebuję co trzy miesiące. Zestawy infuzyjne, zbiorniki, chusteczki nasączone alkoholem, baterie do pompy lub inne rzeczy, które mogą się przydać,za darmo aby bez stresu zająć się cukrzycą.

Kiedy myślę o refundacji w Polsce, czuję, że jest to bardzo niesprawiedliwe. Wiem, że mam szczęście, bo ja mam prosto, łatwo i za darmo, a Ty nie. Jest mi z tym źle. Głupio mi, że mogę po prostu otworzyć kolejne pudełko z FGM, nie przejmując się jego przedłużeniem i planowaniem budżetu na cukrzycę. Zawsze można powiedzieć, inni mają gorzej. To prawda, ale warto podkreślić, że wsparcie finansowe i dostęp do technologii diabetologicznych poprawiłyby jakość życia i wyniki w cukrzycy Twoje i bardzo wielu innych cukrzyków w Polsce

Jest mi smutno, ale obiecuję Ci, że będę angażować się w każdą walkę o wprowadzenie lepszego systemu refundacji cukrzycy w Polsce. Z całego serca będę wspierać Ciebie i naszych przyjaciół i mam nadzieję, że kiedyś z dumą powiem, że Polska ma takie same standardy  jak Francja.

Wszystkiego najlepszego,
Adrianna

Insulin Crisis in Iran – by Mahsa

I’m a 20-year-old girl and I was diagnosed in 2019 (just under a year and a half ago. I live in Tehran. I love dancing and singing. This year I’ve made lots of friends who also have diabetes, and reading English books is another interest that I’ve recently discovered. 

It’s been a real tough year. In these quarantine days, lots of people are dying in my country because of coronavirus. My mother is dealing with coronavirus now. Fortunately she is feeling better and better everyday.

On top of this, Iran is facing an insulin crisis. Suddenly, officials in Iran just made any foreign equipment and medicine for diabetes management unavailable – without any consideration for people with diabetes and our doctors’ opinions. Usually, people with diabetes must search lots of pharmacies in their city for insulin. If they are lucky, they can find 2-3 insulin pens – usually only short-acting types. Novorapid and Lantus are popular types among diabetics here (people take injections with pens). Recently, the only accessible type of long acting pens is “Basalin,” for which there is no international evidence and confirmation that this medicine is safe and credible (e.g. FDA approval). 

Among all the insulin problems, we have to cope with the shortage of blood test strips too. We are forced to use “internal glucose meters,” which we don’t trust. You must know we just have access to glucose meters – there are no other advanced devices available (such as pumps, sensors, CGMs like Dexcom, etc.) and nowadays we can’t find testing strips. Now how can we control our diabetes?! We don’t know. 

We’ve heard lots of heartbreaking stories. For instance, there was a mother who didn’t feed her diabetic children cause they couldn’t find insulin. I myself use Novorapid and Toujeo, and Novorapid quickly became 10 times more expensive than what I could find about 3 weeks ago. The cost of one pack of Novorapid and 2 packs of Toujeo was 200,000 rial (about $5 USD or $6 AUD) and that was in pharmacy and with insurance. Three days ago I could find a pack of Novorapid and I paid 2,750,000 rial – approx. $65 USD/$91 AUD – and that was without any insurance cause we couldn’t find it anywhere, so we’ve bought it from a smuggler who buys medicine and sells it illegally and more expensive than what it should be. The cost was not logical at all! 

We don’t know why exactly this happened! Some say it’s because of the American sanctions against Iran. All we know is that political issues must not affect people’s lives like this. 

In response, the diabetes community has made social media groups and used hashtags to help these people with our own stores of insulin. We don’t know what will happen next. I have no idea what else people can do to help us overcome this. The problem is a political issue that affects people, especially those of us who are dealing with chronic diseases for the rest of their lives. It is cruel. It is unfair.

Follow #ThereIsNoInsulin انسولین_نیست#  for more perspectives on the developing situation in Iran. Nonprofit advocacy groups like T1International are working to achieve #insulin4all. 

Read in Persian: 

من یک دختر ۲۰ ساله هستم که در سال ۲۰۱۹ مبتلا به دیابت شدم.( کمتر از یک سال و نیم پیش) 

من در تهران زندگی میکنم. عاشق رقصیدن و آواز خواندن هستم. علاقه ام به خواندن کتابهای انگلیسی را تازه کشف کردم ،و  امسال دوست های دیابتی زیادی پیدا کردم.

امسال واقعا سال سختی بود. مردم زیادی در کشورم، به خاطر ویروس کرونا در حال مردن هستند.

مادر من هم درگیر ویروس کرونا شده اما خوشبختانه، هرروز بهتر و بهتر میشود. 

از آن مهم تر، ایران با بحران انسولین مواجه است. به طور ناگهانی، صاحب منصبان در ایران همه دارو ها و تجهیزات دارویی خارجی را برای افراد دیابتی، غیر قابل دسترسی کردند؛ بدون در نظر گرفتن نظر افراد مبتلا به دیابت و پزشک ها. معمولا دیابتی ها باید در بسیاری از داروخانه های شهر خود برای انسولین جست و جو کنند. اگر خوش شانس باشند میتوانند در نهایت۲-۳قلم پیدا کنند_معمولا فقط از نوع کوتاه-اثر.نوو رپید و لنتوس دو نوع انسولین هستند که درمیان مردم، متقاضی بیشتری دارند.(ما با انسولین قلمی تزریق میکنیم.) اخیرا تنها نوع انسولین قلمی طولانی-اثری که در دسترس است “بازالین” است، که هیچ تاییدیه و مجوز جهانی مبنی بر اینکه استفاده از آن قابل اعتماد است، وجود ندارد.( مثل تاییدیه FDA).

درمیان تمام مشکلات انسولین، ما با کمبود نوار تست قند خون نیز مواجه هستیم. ما مجبور به استفاده از تولیدات داخلی دستگاه تست قند هستیم، دستگاهی که به آن اعتمادی نداریم. لازم است بدانید که در ایران هیچ سیستم پیشرفته ای برای کنترل دیابت در دسترس نیست.(مثل سنسور ها، CGMها مثل دکسکام ، پمپ و…) ما فقط از دستگاه گلوکومتر استفاده میکنیم و امروزه نمیتوانیم نوار تست دستگاه هایمان را پیدا کنیم.

حالا چطور باید دیابت خود را کنترل کنیم؟ نمیدانیم!

ما شنونده داستانهای غم انگیز زیادی بودیم؛ برای مثال، در مورد مادری شنیدیم که نمیتوانست به بچه های دیابتی خود غذا بدهد چون هیچ انسولینی پیدا نکرده بودند.

من نوورپید و توجئو استفاده میکنم و نوورپید به سرعت، ۱۰برابر گرانتر از چیزی که ۳ هفته پیش خریدم، شد. ۳هفته پیش، ۱بسته نوورپید و ۲بسته توجئو را به قیمت ۲۰۰،۰۰۰ ریال خریدم. این قیمت را با بیمه پرداخت کردم و دارو را از داروخانه گرفتم. ۳روز پیش، ۱ بسته نوورپید را به قیمت ۲،۷۵۰،۰۰۰ ریال خریدم؛ این قیمت بدون بیمه بود چون هیچ جایی موفق به پیدا کردن دارو نشدیم، آن را از یک دلال دارو(کسی که دارو میخرد و آن را به طور غیر قانونی و گران تر از چیزی که باید، میفروشد.)خریدیم.

 این قیمت اصلا منطقی نبود.!

ما نمیدانیم دقیقا چرا این اتفاقات افتاده است! برخی میگویند که این نتیجه ی تحریم های آمریکا علیه ایران است. تمام چیزی که میدانیم این است که مسائل سیاسی نباید بر روی زندگی و جان مردم تاثیرگذار باشد.

در پاسخ،ما جامعه دیابتی ها، در فضای مجازی گروه هایی تشکیل دادیم و با استفاده از هشتگ ها، به افراد با ذخیره های انسولین خودمان کمک کردیم. نمیدانیم در آینده چه پیش خواهد آمد! نمیدانم مردم برای این اتفاق میتوانند چه کار کنند! مسئله، یک مسئله سیاسی است که بر روی مردم تاثیر گذاشته؛ به خصوص ما مردمی که تا آخر عمر با یک بیماری مهم و حیاتی درگیر هستیم. 

Nigeria Diabetes Online Community (NGDOC) and diabetes advocacy work in Nigeria and Africa – by Debbie Bunmi

In 2012, when there was a lot of uncertainty in Nigeria, seven undergraduates of a reputable university started a discussion in their dormitory about the state of healthcare and diabetes awareness in Nigeria. This led to the creation of the Nigeria Diabetes Online Community (NGDOC) in 2013. Just nine days after this official launch on March 10th 2013, the first ever online discussion about diabetes awareness and advocacy in Nigeria was ignited, birthing the diabetes advocacy movement in Nigeria. 

We are now in year 2020, and the NGDOC has tremendously grown, championed and led many educative, supportive, empowering and advocacy projects in Nigeria and throughout Africa. 

@theNGdoc first caught my attention in the later part of 2013, over a year after I joined Twitter. I had been living with type 1 diabetes for over a decade, and I was searching for a community or online platform where I could get substantial content about type 1 diabetes in Nigeria, and @theNGdoc provided that.

Fast forward four years later, after I became good friends with the then Chairman Adejumo Hakeem, M.D. (@hadejumo), I joined the organization as a volunteer. In 2019, I was approached by the Chairman and asked if I would be interested in taking over the running of this awesome organization, which I accepted. It was very scary and super exciting for me at the same time because of the huge responsibility to run a big platform and push the advocacy work around type 1 diabetes and the #insulin4all campaign. 

Interestingly, at @theNGdoc we do mostly offline work because 85% of people we work with aren’t on the internet because of the high cost of phones and internet subscription in this part of the world. Most are living below poverty margin, which has been a big challenge for us @theNGdoc. We discovered through experience that just giving out or buying insulin and other management tools for type 1 diabetes isn’t sustainable in the long run, so we are working on empowering people living with type 1 with sustainable skills. We provide people with the skills to establish start-ups, which will in turn help generate funds so they can afford their insulin whilst going to school or working to cater for their families. 

How can you help us? Donations in cash and in kind really go a long way to keep people with diabetes alive and help them to fulfill their dreams. Since we are still in the process of setting up a platform for web donations, local supporters are welcome to donate in cash. We appreciate international supporters reaching out for virtual volunteer opportunities and following @theNGdoc on Twitter. All kinds of support allow us at @theNGdoc to develop the resources to push the limits in our diabetes advocacy journey. 

Follow @theNGdoc on Twitter here.

Check out our minisode with Debbie here.

(Uganda) Atina Glow Initiatives – by Anita K Ninsiima

Atina Glow Initiatives (AGI) is a public health NGO dedicated to advocating for people living with diabetes and other non-communicable diseases (NCDs) in Uganda. I started AGI in September 2019 with the aim of sustaining the livelihoods of people living with these conditions and reducing the incidence of cases. Today, AGI is a women-founded organization in line with the U.N. Sustainable Development Goal (SDG3) and a way for me to use my voice to advocate for people living with NCDs in my community. 

The challenges I faced as a type 1 diabetic for 14 years since childhood motivated me to form AGI: coping with the new lifestyle, managing my daily medications, and dealing with stigma through adolescence, secondary school, university and beyond. Because of all this, I felt I needed to make an extra effort to inspire people out there faced with some of these or even worse challenges and encourage them to live a normal happy and healthy lifestyle. In addition to living with type 1, I have lost friends and family due to NCDs like cancer, hypertension, and diabetes, and through starting the organization I can help to educate the community on control and preventive measures and how to cope with these diseases in life.

It was a shocking experience to receive the news that I have diabetes at a young age. But this didn’t stop me from studying and making it to university with the full support of family and friends. At university, I was always branded a “sickly lady” who would never make it in life, but actually that was what motivated me to stand out and establish AGI as a clear voice for people living with NCDs – which is essential for the community.

In Uganda, NCDs are common and young children and youths have had their own share of the burden. According to World Health Organization statistics, NCDs kill 41 million people each year, equivalent to about 70% of all deaths globally; three-quarters of deaths from NCDs occur in low and middle-income countries. 

Through the AGI slogan “Embracing Ample Health,” we emphasize that good health is a priority for every individual. We engage AGI members in health and development initiatives, creating a safe space and acknowledging and educating this particular group about their health rights as they relate to living with NCDs. On our Facebook page, we seek to bust myths about NCDs and advocate for government support of people living with NCDs during the COVID-19 pandemic. To reduce the burden of living with NCDs, we also advocate for accessibility to optimum healthcare for people throughout Uganda. On the AGI website I shared a personal testimony about my diabetes diagnosis, which taught me the following lessons that I wish to share with others through my work: 

1. Acceptability

2. Adoption

3. Body Discipline

4. Fighting for my body

5. To create a change

Follow Atina Glow Initiatives on Facebook and their website.

Living with Diabetes in the Maldives – by Juzan Mohamed

10 years after my diabetes diagnosis, no matter how much I always wanted to keep hoping, believing, and praying, there were several times that I almost thought, “I’m not going to make it this time. I’m probably going to die on this hospital bed”.

Today, I’m a special educational needs teacher and a member of Diabetes Society of Maldives. I love both kids and cats very much!I would like to thank all the doctors who have treated me and helped me. I would like to thank my father, brother, and especially my mother, who had been the source of my strength. My heartfelt thanks also goes to the Diabetes Society of Maldives. Words cannot describe how thankful I am for that community.

Several people have mockingly told me that I must have gotten this disease because I must have eaten a lot of sugar. I believe it’s important that we put more effort into educating the public about diabetes, its risk factors, and any preventive measures. I wish they knew that there are many factors involved not only in a diagnosis, but in diabetes management. Insulin for us, along with the means to inject it, is as important to us as the air we breathe. We just cannot survive a single day without these injections.

Getting an insulin pump in 2017 was nothing short of miraculous. This was a day that I never thought would come. This pump is always connected to the body with a tiny needle which needs to be changed once in every 3 days – it’s microscopic in size and automatically injects my insulin. Yeah, this is pretty amazing!

That’s why I advocate for the community of diabetics in Maldives to soon have access to more effective treatment options, including different brands/types of insulin and increased availability across the country. It is my hope that insulin pen needles, lancets and test strips would soon be covered under Aasandha, the universal single-payer health insurance scheme of the Maldives. More of us with type 1 diabetes need to have access to insulin pumps, which provide us with an easier life. In Shaa Allah, we will soon have better days and find a cure for diabetes.

Follow Juzan on Instagram: @juzanmohamed

Navigating Life and Diabetes During COVID Times

What a year 2020 has been! COVID-19 has, without a doubt, thrown a spanner in our lives and left us scrambling trying to adapt to a “new normal.” We’ve seen this impact our team at Beta Change in numerous ways too – from sudden change in workload, being stranded away from our loved ones, to working from home with kids, the Beta Change team have had to physically and mentally adapt to life during COVID. At our last meeting, our team discussed how COVID has impacted us and here are some of our thoughts on it from where we are. 

What’s Happening Where We Live?

Ashley lives in Melbourne, Australia where they are currently in Stage 4 lockdown. Some restrictions in place include travelling within a 5km radius of their current residence for essential services once a day, one hour limitations on outdoor exercise and mandatory face coverings when leaving the home. At the time of publication, only the state of Victoria has Stage 3 or 4 restrictions in place. 

Katie lives in New York, in the U.S. where regulations also vary across state and federal levels, which makes it important to keep tabs on the travel restrictions and data for each state. Everyone wears masks, especially in densely populated areas. Big events like weddings are getting cancelled or rescheduled for Zoom, so it’s been hard to accept that things have to be done differently than planned.

Pei Yan lives in Singapore, where they are currently in Phase Two of Circuit Breaker. This means that most businesses can operate with Safe Management Measure in place. Full reopening of schools had started at the beginning of June, with adjustments made to the current school term. Currently, it is still mandatory to wear a mask once you step out of your house.

Stephanie lives in Perth, Western Australia where life seems to be almost back to normal. Many restrictions have eased allowing for businesses to operate with a 2 square metre rule in place; stadiums and large events can operate at half capacity. However, state and international borders remain closed, meaning all non-essential travellers must quarantine for 14 days. 

Fi lives in Geelong, Australia where they currently have stage three restrictions, which means staying at home except for exercise, essential shopping or work. Like all the rest of Victoria, wearing a mask is mandatory. School children have also returned to remote learning after a brief period back at school.

How has COVID impacted you?

Ashley: Since March, I’ve been working from home, which has its pros and cons. While I save the effort on the two hour round trip travel time, I really do miss the bustling workplace environment and corridor conversations with colleagues. The hardest part has been not being able to see my family during this time as we’re quite close. Thankfully we’ve got video calls! 

Katie: I orchestrated a remote move while sheltering in place. The transition to working and attending graduate school remotely has also been quite smooth. However, there’s a strange phenomenon of time feeling like it’s passing by both quickly and slowly at once.

Pei Yan: All schools went into a full home-based learning routine early April. As a teacher, it has been a steep learning curve for us to pick up skills needed to conduct synchronous or asynchronous online lessons to students. I have never sat in front of my computer for such long durations before. It was also difficult to be working from home with other family members doing the same as well. Right now, many are out and about and life has partially resumed, but we know we will not be able to return to how it used to be before COVID for a while.

Stephanie: This pandemic separated me from my fiance for 5 months. When restrictions started in March, I feared being isolated from my friends and family. And with Giles’ fly-in-fly-out roster we couldn’t risk him bringing COVID into the house where I would have been working. I travelled to Hobart, Tasmania to ‘see out’ the pandemic with the support of my family. I have been lucky to have continued working from home surrounded with support, and get to holiday within Tasmania again; I’m now a week into my 2 week quarantine after arriving back in Perth and I can’t wait to see my man! 

Fi: We are currently in our second round of remote learning. My son is in grade 1, thus balancing work and home schooling has been interesting to say the least. Though it has been challenging, I have loved the opportunity to see how he learns and assist him to be the best learner he can be. The most challenging aspect has been being separated from my parents and trying to explain to our son this is only for a short time and we will be together again soon.

As a nurse we now have to wear safety glasses and face shields for all clinical contact. This has had its challenges, especially in engaging with patients. Since March, I have been doing a mixture of Telehealth appointments and face to face in the hospital. I could never have imagined doing a pump or CGM start via Telehealth but this has now become the norm. Surprisingly it works well and I have loved being challenged to support and educate people living with diabetes in a different manner. 

How has COVID impacted your diabetes management?

Ashley: The biggest impact COVID has had on my diabetes management has been my exercise routine and being more sedentary. With gyms closed, I’ve had to adapt to home workouts, which worked out well at the start until the motivation waned away. 

Most of my health appointments have also been moved to telehealth with a few exceptions. It’s been interesting to see the COVID precautions step up over time and its impact on healthcare staff. There’s been a heightened sense of anxiety and stress from staff, which can make appointments a bit more stressful from a patient perspective. 

Katie: It’s been hard to adjust to having less movement built into my day – normally I’d hit 10,000 steps without even trying. Now, without a commute, I need to be more conscious of how much I need to take a break, get up, and move. 

Cooking every meal has been getting harder as time goes on, so takeout dinners have been a real treat! 

Pei Yan: When the circuit breaker was imposed, all of my aikido training sessions were suspended and I stayed seated at my computer desk most of the time everyday. My eating habits also changed. While I enjoyed deciding what to have for each lunch, as time went by, it got more difficult to think of a decent meal to cook and choices became slightly more repetitive and boring. Once in a while I ordered food delivery when I felt I needed a change in food choice. All of this impacted my weight more than my diabetes management. 

I am not sure how my experience going for my diabetes appointment will change as I had my last appointment just before the circuit breaker measures kicked in. My next appointment will be in September, so I will wait for the SMS notification from the hospital to see what options there are, but I will still need to make a trip to the hospital to get my medications.

Stephanie: COVID has helped me become more conscious about my exercise and food habits, so my diabetes management has actually been reasonably good! My usual 30 minute walk as part of my commute each day turned into intense workouts which has evened out my blood sugars and boosts my mood. I’ve also taken a break from CGMs and relied on the trusty finger prick, so I haven’t been getting that extra fatigue that comes with more data. 

Fi: I think the biggest impact for me in relation to my diabetes is exercise. Finding time to exercise especially with the restrictions, juggling work and home schooling has been challenging. I’m grateful I have a 7 yr old who loves playing hide and seek and freeze tag as this has kept me more active than I would have otherwise been.

What are you doing to stay positive?

Ashley: I think the biggest thing for me has been to focus on being kind to myself. Keeping up with social connections with my family, friends and colleagues has been key to being sane, grounded and reminding me that I’m not alone. I also try to find things to look forward to such as some online shopping and changing my physical environment around me by getting flowers or lighting a candle. 

Katie: I echo Ashley’s reminder! Being kind to myself is the hardest thing, but also the most important. I also try to remember that this is temporary, even though we don’t yet know for how long. 

Pei Yan: I guess being able to go back to work in school and resuming most of the activities I like before the Circuit Breaker has been a relief. At the same time, I am thankful that I am surrounded by students whom I can have fun social connections with at school. Dynamics among social groups of friends seemed to become distant, but there will be other groups of friends around to cheer me up or to have fun with.

Stephanie: I think we’re all on the same page with this one. It’s the little things that matter right now. I’ve been trying to take in everything and every interaction as if I was a kid seeing things for the first time, and really delving into the beauty of the landscape, why I enjoy the company of certain people, crying openly (it gets so overwhelming sometimes) and sharing those pieces of you that are usually stored away because life is too busy. 

Fi: I’m so grateful for technology and being able to connect with family and friends. My parents have been doing virtual cooking classes with their grandsons, which have been so much fun. Another highlight has been our son reading to his Nan each day on FaceTime. Seeing our little boy adapt to the new norm has made it so much easier for my husband and I to stay positive. I have also found a new love of rainbows and the hope they bring. Though COVID has definitely thrown us challenges  it has definitely made us appreciate everything in our life so much more.

And there you have it! A huge thank you to our team who have so openly shared their experiences with adjusting to our new normal. How about you? How are things going for you and what are you doing to stay positive? We would love to hear from you!