Tuesday, 10 July 2018
Sheila's will to speak and act for patients living with diabetes stronger after attending GPC2018
Sheila Regina de Vasconcellos – Bakken Invitation Honoree 2015 and a patient living with Diabetes - explores the way forward for the fight against Diabetes after attending the 8th Global Patients Congress.
Coming from Brazil, a country where resources are lacking and where there are few diabetes education initiatives, people who live with diabetes face a difficult situation. In Brazil, we go through several challenges when living with this "silent disease". Silent because diabetes complications build up for years without any symptoms. Silent also because people prefer not to speak about diabetes. Young people, as well as adults, who are yet to come to terms with their condition start developing premature heart diseases as well as kidney, feet, eyes, and brain complications. All this could be avoided if we started to speak more about the condition to better manage this serious health condition.
As a journalist, speaking has never been my problem. During a severe hypoglycemia with no symptoms I fell and broke my ankle in 3 parts. To prevent this situation from recurring, I found in medical technology the safety needed. I learned how to count carbohydrates and started using an insulin pump connected to a glucose sensor. With it going off at every glucose variation, I have come to live better and manage diabetes better.
I figured out, then, that it was time to give back to the community, retributing a little of the extra life I had gained. Since I was invited to participate in the Bakken Invitation in September 2015, I began volunteering for diabetes, advocating for the reduction between diagnosis and appropriate treatment time, and to ensure a full life horizon for patients and their caregivers.
I got closer to people who live the same as me and our families. Many still do not accept diabetes and its treatment. In addition, due to lack of resources, health access or knowledge they continue to go through hospitalization as a result of severe hypo and hyperglycemias. I realized that I could help them - and myself too - by elevating our voice. I’m currently looking for spaces for us to share experiences, strengths and do more for diabetes in Rio de Janeiro and in Brazil as a whole. I started volunteering as a member of the Association of Diabetics of Lagoa in June 2016. A few months later, I was elected Vice-President of this same association, where I started to advocate for the design of public policies and use of social networks for diabetes education through participating in congresses, seminars, conferences, forums, meetings, and public hearings in Brazil.
In 2017, we opened the year increasing our presence in the media (TV, Internet and print newspapers) with various stories about the lack of supplies and insulin analogues for the treatment of people with diabetes in Rio de Janeiro. I never thought I would be involved in politics, but I began to attend meetings with councilors, senators, leaders of patients and professionals entities, physicians, digital influencers, caregivers, lawyers, and anyone who could somehow contribute to change the situation in a way that would allow people living with Diabetes access quality health care.
However, the silence of the authorities is deafening. I see children regressing in treatment, disconnecting and putting away their insulin pumps, patients reuseing single time use supplies or rationing tests to try to manage diabetes during a serious state financial crisis. This pushed us to take action: we organized protests in the streets and through social media networks and events to provide blood glucose tests, lectures, recreational activities, carbohydrate counting workshops, psychological support, lawyers guidance, and meetings with social workers and podiatrists. We rescued a diabetes association that was about to close its doors.
Now, in the middle of 2018, the fight continues. We still haven’t been able to offer the right treatment to everyone through our public UHC system, called SUS. Many have to go to court against the State to receive their treatment, while some Brazilian states already have regulations to treat children, teenagers and adults who live with diabetes with the best available medical therapy. I believe we are responsible for our choices, all of us. I have chosen to fight so that children like Gustavo can be entitled to treatment that allows for the best possible management of diabetes today. Those living with diabetes know the care they need 24 hours a day. And life is not just about diabetes. We need to study, work, love, have fun and we cannot continue to accept outdated, poor quality or lacking treatments. We need to speak more and louder about diabetes and what is needed to prevent and properly treat a disease that is already a global epidemic.
While attending the 8th Global Patients Congress, I learnt more about how we should speak, act and fight for life, health and for a bright future for all! We can change the health system to stop it. We can do whatever we want. Nothing or nobody will stop us. We just cannot be silent.