On the occasion of the 70th World Health Assembly, the International Diabetes Federation (IDF) held a panel discussion in Geneva between people with diabetes and healthcare professionals on priority solutions to overcome national gaps between provision and availability of diabetes care and treatment among underserved populations.
The event highlighted the central role of people with diabetes in all aspects of diabetes management, care and prevention and introduced our new network, the Blue Circle Voices. It also featured the critical perspective of frontline health workers in achieving quality care and optimal health outcomes.
IDF policy recommendations to improve access to diabetes care in Brazil and South Africa
IDF collaborated with its Members and Blue Circle Voices in Brazil and South Africa to develop policy recommendations to improve diabetes care in their respective countries. The recommendations can be downloaded by clicking on the images below.
In December 2016, IDF held a consultation with the Blue Circle Voices (BCV) network with the objective of establishing the priorities of the network. Some 82 participants from 43 different countries responded to the survey.
The main issue identified by the BCV members was access and affordability of medicines, devices and medical care, followed by education, prevention and finally discrimination.
My name is Paula Chinchilla, I am from Costa Rica, and I have been living with type 1 diabetes for 18 years. In Costa Rica, everyone has access to the supplies they need to control their diabetes. However, in adults’ hospitals, patients are not provided with the amount of reactive strips they need for a proper diabetes monitoring. This results in doctors prescribing a fixed amount of insulin, which reduces quality of life. Another issues is that diabetes education, especially for people with type 2 diabetes, is very poor. Many healthcare professionals even say that it is useless to provide diabetes education to people with type 2 diabetes. I receive a box of reactive strips every two months. However, in order to properly monitor my diabetes, I need one box per week. I decided to join the Blue Circle Voices network because I think that people with diabetes, together with carers and relatives of people with diabetes, we can raise our voices to change the perception that other people have of the disease.
Marcelo Gónzalez (Chile)
My name is Marcelo González, I am from Chile, and I have been living with type 1 diabetes for 31 years. In my country, people can access two health systems depending on their level of income: the public, and the private. The difference between them are the quality and quantity of supplies for diabetes care. Furthermore, education is seriously deficient. Chile is in a privileged position compared to other countries of the continent, especially in the Southern Hemisphere. In our market there is availability of most of the insulins, reactive strips, the latest glucometers, medical devices such as insulin pumps and even continuous monitoring systems. However, access is limited. And together with the lack of access, education is really deficient as I mentioned before. That is why I decided to join the Blue Circle Voices network of the International Diabetes Federation. To raise my voice so that, together, we can change the current situation.
Riva Greenberg (USA)
I am fortunate. I live in New York City where I have access to healthy restaurants, top physicians and sidewalks to stroll. Yet, last year I had to have my endocrinologist fight with my health insurance company to get me an insulin that better suited my needs. I’ve also had the privilege to travel across America for the past ten years as an A1C Champion peer-mentor. I have met thousands of people with diabetes on U.S. Medicare who are not allowed enough test strips to keep their blood glucose managed. They cannot get insulin pens, used exclusively throughout Europe, which make dosing, particularly for older people and people with type 2 diabetes, easier, more convenient and less stigmatizing. Only a few months ago, after a long battle with diabetes organizations and patients, US Medicare gave conditional approval for life-saving CGMs (continuous glucose monitors) even though the most vulnerable population to hypoglycemia are people with type 1 diabetes over the age of 60. What can we do? The US system of capitalism and share-holder value often sacrifices the needs of individuals to the benefit of the few. We must find a way to make necessary and life-improving drugs, and devices available and affordable. This effort may come from businesses, small start-ups and large corporations with consciences. Those whose values include service and meeting needs. I believe we must also educate people living with diabetes to realize that they are the key stakeholder in their care. As such, they are entitled to ask for what they need whether that is health professionals who will collaborate and partner with them, access to healthy food in their community or their government working to make medicines available and affordable.
Rakiya Kilgori (Nigeria)
In my country, Nigeria, there is no discrimination against people living with diabetes. They are given equal opportunity like any citizen.The problem we have especially in my locality and its surrounding states is ignorance about the disease. Sokoto state and some northern states of Nigeria suffer the same problem. Diabetes ailments are linked to spiritual and traditional beliefs. People believe that demons are responsible for it and hence believe that the only cure for it is herbs. Lack or inadequate health facilities hinders the detection of the disease. So many people die, especially in rural areas. Poverty is another factor that hinders the management of diabetes. The country is in recession and families cannot afford three meals. They cannot afford diabetes diet and the drugs are very expensive for the majority of the population. They can't afford insulin and glucophage and therefore resort to traditional medicine. It is so sad people die daily due to the complications of the disease.
Liliana Tieri (Argentina)
My name is Liliana Tieri and I am the Director of the CU.I.DAR association in Argentina. The first time I heard about diabetes was when my daughter was diagnosed with T1D when she was just 2 years old. It was a difficult fight, especially at the beginning, but I managed to get all the supplies and insulin to properly care for her diabetes. However, this is not the case for everyone in my country, Argentina. Even though we have laws that guarantee 100% of supplies and insulin, the health coverage does not always provide people with diabetes with access to everything they need for proper care. We always say that people with diabetes should not access just any care, they should have access to the optimal care. It is the right they have to healthcare and life.
Roxana Vizcaíno de Jaramillo (Ecuador)
My only son, Sergio, is 5 years old and was diagnosed with type 1 diabetes 3 years ago. I believe that one of the main issues for patients when it comes to treatment and care is the lack of education. Here we cannot find a comprehensive treatment with a doctor, diabetes educator, psychologist and nutritionist. The prices of all supplies are extremely high in the pharmacies. The lack of education is what leads to patients not been empowered about their treatments. One of the main problems that I have experienced with my son Sergio is that as he is so young, it is very difficult to find small syringes in pharmacies, even less in hospitals. For many people this may seem insignificant, but for the treatment of a child, it is really problematic not to find such syringes. I felt really honoured when I was told that I had been nominated to become part of the IDF Blue Circle Voices network, that would allow me to be a voice for people with diabetes. This is an excellent platform to discuss about our problems and also about our success stories. The only people that can really talk about diabetes are the people that live with it 24/7. All of us look for the wellbeing of the people we love, that is why I am honoured of being a BCV member. Unite for diabetes!
Bruno Helman (Brazil)
Hello everyone. All ok? My name is Bruno Helman, I am 22 years old and I have been living with type 1 diabetes for four years. I am a representative of Blue Circle Voices here in Brazil and the message that I would like to share with you is, despite diabetes which brings us many daily challenges it is possible to live a completely healthy and happy life. By taking certain measures. It is important, that us, the community with diabetes, get together and start fighting for our rights, and that our voices are heard. Enough of missing our basic supplies at health posts. Enough of being treated in a discriminative and ignorant way. Enough of having our rights violated, and our self-esteem degraded. Let's go together, because together we are stronger. I count with you on this journey. Long, but sweet. A hug and see you later.
Sheila Regina de Vasconcellos (Brazil)
My name is Sheila Vasconcellos. I live in Rio de Janeiro, Brazil. I've been a type 1 diabetes patient for 32 years. After severe hypoglycemia I had to start using an insulin infusion pump.
To get access to this type of treatment I had to file a lawsuit. Although our constitution guarantees the health of the population, for this type of treatment as well as for many others like insulin analogues. We need to apply to justice to achieve access. This way, it's very difficult for people to achieve proper control of their diabetes. The City government provides the strips for glycemia measurement, but not in the required quantity. They provide a standard quantity that does not take into account the number of tests needed to make it possible to control diabetes, such that the person can reach an HbA1c level of 7. In addition, in Brazil, we are facing a serious political and economic crisis and the scarcity of resources is now reaching the public health sector. We have hospitals closing in Rio de Janeiro, we lack supplies for the treatment of people with diabetes. I, for example, have now had my pump process interrupted. I will have to go to court to ensure the continuity of my treatment. So it is an honor for me to join Blue Circle Voices and join other voices in the world for a breakthrough, for an improvement in the quality of life of all the people with diabetes in the world.
Every two years, IDF launches a call for new YLD Candidates’ nominations to all its Members. IDF only accepts YLD nominations from its Members, as all YLD Candidates must complete a project in their country, which can only be successfully developed with the support of IDF Members.
In order to be eligible to become part of the network, the IDF Members’ nominees need to fulfil the following criteria:
Live with any type of diabetes
Be between 18 and 30 years of age as of January 1st of the year after the nomination takes place (e.g. 2017 nominees must be between 18 and 30 as of January 1st 2018)
Communicate effectively in English. The YLD Candidates are expected to understand, read, write and speak English to be able to communicate with other YLD Candidates and the IDF Executive Office
Have an active relationship with an IDF Member and maintain that relationship for the whole period as a YLD Candidate
Exhibit passion for making a difference in the diabetes community, locally, nationally and/or globally
Be able to immediately develop, lead and execute a diabetes project with the support of the nominating IDF Member
Have regular access to internet for communication and reporting purposes
Be committed to allocating the time and maintaining the skills required to be involved in the Programme. This will include participating in various activities directed by the IDF EO.
Nominees must fill in an application form provided by IDF, where they must provide information on themselves including some medical details, and submit a copy of their passport. IDF Members need to fill a reference form, also provided by IDF. Both documents are compulsory. The timeline of the nomination process may vary, but will generally take place in the second quarter of the year.
The next call for nominations will take place in 2019.