Issue: July 2017 - Improving access to diabetes care
Section: Diabetes in society
Access to diabetes care in my home country…
In May, the IDF Blue Circle Voices (BCV) network participated in a panel discussion at the 70th World Health Assembly (WHA) in Geneva. BCV members, healthcare professionals and others discussed possible solutions to overcome diabetes care and treatment gaps among underserved populations worldwide. In this Diabetes Voice segment of Diabetes in Society, we hear from three BCV members: Riva Greenberg, Roxana Vizcaíno de Jaramillo and Vanessa Pirolo are all active, experienced diabetes advocates who attended the WHA event in Geneva on behalf of IDF. We asked them to report on the status of access to diabetes education, care and treatment in their home countries and how they are working hard to make a difference.
Riva Greenberg lives with type 1 diabetes. She is the 2015 recipient of the International Diabetes Federation Lecture Award for education and advocacy, international speaker, health coach, author and a contributor to the Huffington Post.
I had the privilege to introduce the Blue Circle Voices at IDF’s side panel event at the World Health Organization meeting in Geneva in May. In addition, I was asked to share the state of healthcare in America, my home country. Under our session’s banner, Access to Diabetes Medicines and Care in Underserved Populations, you might not think the US would be included. You would be wrong.
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. You may also be aware healthcare in America right now is in a state of disarray. We may discover soon that people with pre-existing conditions like diabetes will not be able to get healthcare or it will be unaffordable.
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.
I see the Blue Circle Voices, 102 diabetes advocates and their loved ones and caregivers, as an undeniable and united voice raising diabetes awareness and creating positive change for people with diabetes, everywhere
Roxana Vizcaíno de Jaramillo is a mother of a child living with type 1 diabetes diagnosed in 2013.
Access to diabetes care is very limited for people with diabetes in the public Health Service for Ecuador. While there may be a belief that hospitals in Ecuador are well supplied with all the necessary treatments for diabetes, it is not the case. People with diabetes needing care at the hospital don’t receive required medicine, and are simply told there is none available. Patients must buy it themselves in the retail pharmacy where prices are too high for most to afford. In addition, the people selling the medicine in the pharmacy have no knowledge about insulin. The pharmacy doesn’t differentiate between name brands or type of insulin, and for the person who is not educated about diabetes management, he or she doesn’t know which insulin is right for them. There is also a lack of syringes smaller in both size and number of units for children.
As a member of the Blue Circle Voices (BCV), I try to be a voice among FUVIDA (Fundación Aprendiendo a Vivir con Diabetes), the diabetes foundation where I am an active member. I am dedicated to helping families like ours who are connected to or living with diabetes. For me, educating children about diabetes, helping them feel good about themselves is key. It is important to help children and teenagers with diabetes understand that their condition should never limit them and to help them develop confidence to be able to do or participate in anything they desire. Children with type 1 diabetes deserve the same opportunities as any other child or teenager.
A recent example of my activity on behalf of BCV is a project where I work with a group who has access to Star Wars character costumes. We take photographs with positive messages and post them on social media through FUVIDA’s webpage and children with type 1 diabetes are involved. For example, messages include:
May the force be with you for every blood glucose test you take AND a real Jedi knows the importance of diabetes education.
In an example of one of the images, a child with type 1 diabetes is checking his blood glucose with Darth Vader. Our objective is to help children see that they are the main character in a life with diabetes and while it is not always an easy journey, inner strength and love from people around them are important for progress.
Vanessa Pirolo was diagnosed with diabetes 17 years ago. She is a member of Council of Associação de Diabetes Juvenil, a journalist specialized in health, coordinator of advocacy for 30 Brazilian Diabetes Associations and blogger at Convivência com Diabetes.
With a diagnosis of diabetes, a person begins their journey to meet the challenges of treatment to achieve targets and health, which includes access to specialized doctors, effective medicines and diabetes education.
The following are a few examples of the problems Brazil faces with access to adequate diabetes care and treatment:
- Overcoming long queues (waitlists) to have access to a specialized doctor or a multidisciplinary team so vital for all aspects of treatment.
- Dealing with Brazil’s healthcare bureaucracy which can be a barrier to a person getting the most modern and effective medicines and supplies.
- Finding or receiving diabetes education and learning how to filter true diabetes information from false.
- Staying motivated for self-management without positive assistance or recognition from healthcare professionals.
Through the Associação de Diabetes Juvenil, we have the Programa Nacional de Jovens e Adultos com Diabetes. I represent 30 Brazilian Diabetes Associations to work on public policies to improve treatment in the country. To do this, we inform and help the Municipal Health Secretaries as well as the national media to understand the importance of access to essential medicines for people with diabetes We help people in positions of leadership or influence understand how key it is for people living with diabetes to have adequate medicines and supplies. We also work with the Ministry of Health so that more modern medicines can be made available. In addition, we are striving to create a diabetes education program for health professionals so they can adequately serve the public with diabetes.