I’m Mary, from Shanghai, China. I was diagnosed with type 1 diabetes in July 2003. At that time I was 18 years old, and busy preparing for the entry exam for my undergraduate studies. In 2011, I was recommended by the Chinese Diabetes Society (CDS) to become an Ambassador: Spokesperson for diabetes in China, whilst also completing my Masters in Media and Communications at Peking University and teaching Chinese to students. Now my passion is advocacy for type 1 diabetes.
Ten years ago, there very few physicians were aware that diabetes was a disease not entirely exclusive to the middle aged and elderly. For many in China dealing with diabetes, death is unfortunately a common outcome for those who ignore the symptoms for fear of stigma or from receiving inadequate treatment. Awareness in China lacks the support from organizations and mainstream culture found in many Western countries, thus when most people are confronted with type 1 diabetes they are unfamiliar with the symptoms, treatment, and the knowledge that it is possible to lead a normal life through daily monitoring and minor changes to one’s diet. In addition, there is definitely discrimination towards people with type 1 diabetes. People think you’re a drug user when you’re taking insulin. I haven’t even told some of my close friends because I don’t think they would understand. I hid my disease for years. A lot of people in the rural parts of the country hide their disease, and refuse to seek treatment to avoid the discrimination.
In China, not too many type 1s wear a pump because pumps, for most of us, are not affordable. Pumps and supplies are not included on our health insurance, so only people who really need it and can afford it have a pump; otherwise they do injections. Normal insulin like Lantus, Humalog etc. is covered by health insurance in China, but glucose meters and test strips are still not covered. Lots of type 1s don’t monitor their blood sugar very often, because the test strips are too expensive. I didn’t test my BG very often at the beginning due to the same reason. I can get supplies like regular insulin easily. You have access to them in almost every public hospital in large cities. For the rural areas, it’s much more difficult to get what they need and so the treatment they receive is inadequate. We don’t have diabetes educators in China though I have heard the Chinese Diabetes Society (CDS) wants to build a new institution for diabetes education. We now have a developing programme to provide examinations to become certified diabetes educators but it is not yet in place.
Since we don’t have diabetes educators and we don’t have a specialized institution for people with type 1 diabetes, most of us struggle with our diabetes alone. Endocrinologists can only tell us how much insulin to take, and nurses can only say how you should combine your diet and sport together to control blood sugar. But how do you get some tips on daily life? How do you get some peer support to make you stronger? How do you build an optimistic attitude towards this condition? This is what I want to do now; build a platform for type 1s to not only provide diabetes education but also bring type 1s together.
There are currently very little statistics or information available about diabetes care across China. In July 2011, a project to look at this called “3C Study on Type 1 Diabetes in China” was launched in Beijing, and in December 2012 the results of this study were presented by the Chinese Diabetes Society (CDS). This study gathered data and information on the coverage, cost and care for people with type 1 diabetes in China. I was a spokesperson for this study, explaining to the public what it is like to live with diabetes in China and how the results of the 3C study can help improve the lives of people with diabetes in my country. In July 2012, a second part of the project was launched, called “China Type 1 Diabetes.” For this project I also acted as a spokesperson for the general public and media. This project has the following aims: 1, improving social awareness for diabetes 2, eliminating the social discrimination of people with diabetes 3, reducing the medical expenses burden for people with diabetes 4, improving the care for people with type 1 diabetes. For the next step, I want to create a specialized organization for type 1 in China to spread knowledge, education and provide support, as well as create a platform for people living with diabetes to speak openly about their disease.
China is one of the countries most affected by the diabetes epidemic but there is currently no formal organization for type 1 diabetes here. In fact, there is a huge lack of knowledge about the condition. Ever since I was nominated to take part in the Young Leaders Program, I have made it my mission to spread knowledge of type 1 diabetes in China. I took part in the Type 1 Diabetes kick-off in Beijing in 2012, delivering speeches to eliminate discrimination and enhance education. I also joined the TeamBG, a UK organization formed by people with type 1, cycling from Brussels to Barcelona to raise awareness of diabetes last year. I would like to achieve the first step in calling for much more support from the government health care system to improve type 1 diabetes care and reduce the medical burden. I hope that people with type 1 diabetes in China can get together to be able to fight discrimination and to not feel constricted by a long-term health condition. They should have confidence to manage their diabetes in order to lead healthy and happy lives. Together we will be stronger!
Thanks for reading!