As many of you know, I will soon (in just over a month!) be headed to the Dominican Republic to volunteer and help put on summer camps for kids with diabetes in the capital, Santo Domingo. I’ve already interviewed AYUDA, the organization that I’m volunteering and raising money for, but now I want to share more with you through an interview with Aprendiendo A Vivir (AAV), the partner organization that AYUDA works closely with and supports. Partnering with a local Dominican organization is so important to AYUDA’s work because without AAV on the ground supporting the local people, many Dominicans living with diabetes would be lost and they would otherwise be lacking the amazing resources that AAV offers. Below, Jose Antonio Lopez, founder of AAV, offers some insight into the local organization.
You’ll also get to hear from Virgilio, a supporter of AVV who recently ran the London marathon on behalf of Aprendiendo A Vivir. I met up with Virgilio while he was in London before he tackled the big marathon challenge, and I really look forward to seeing him and Jose in the DR when I travel there in June.
Can you tell readers a bit about Aprendiendo A Vivir?
AAV is a Dominican NGO for people living with diabetes. It was founded in 2005 by a group of people led by me, Jose Antonio Lopez, who had been recently diagnosed with Type 1 diabetes and had the luck to treat myself in Joslin Clinic in Boston, MA- were I was exposed to a world leading treatment of diabetes based in Patient Control through education.
Having that opportunity and seeing the big lack of education and information around diabetes in DR, we brought this project to life and today it is leading the fight against diabetes in our country. We have an Education Centre in Santo Domingo and are responsible for the biggest campaign on diabetes awareness and education in the DR called Ganemosle la Carrera a la Diabetes.
Why do you think it is important that Aprendiendo A Vivir exists?
Diabetes is a condition that affects people’s lives in a certain way that is totally manageable. In the DR, one of every four Dominicans has diabetes or is at risk of having it at some point in life. Therefore diabetes is an important health issue in our country and preventing it, or teaching people who live with diabetes to live a normal live is a must. With little being done by our local authorities, AAV moves towards a future with less people having life impact complications from diabetes and promoting a healthier country trough exercise, good nutrition and better quality of life.
Part of your aim is to raise awareness and advocate for people living with diabetes. What would you say are some of the biggest obstacles for people with diabetes in the Dominican Republic?
1. Access to medication and meters: Diabetes has an expensive medical treatment. The costs, on average, to treat diabetes in the DR through insulin and meter strips is more than 50% of the minimum monthly salary of any Dominican.
2. Access to diabetes education: Education for people with diabetes is lacking. We should advocate to make similar services to what AAV offers in our Centre available to everyone throughout our country.
3. Local policy around diabetes: Authorities should be more involved and target relevant issues around the topic which are being ignored but have a huge impact in future costs of country health budget.
Can you tell me a bit in particular about the needs of children and some of the issues they have accessing insulin and care?
Insulin is accessible but expensive and some children do not get the appropriate treatment. I believe that AAV can be the mid-point between local medical care because our camps can offer diabetes education through an efficient continuous supervision of children living with diabetes. It is like the role of a Diabetes Nurse Educator as seen in US/EU health system.
You have a lot of supporters throughout the Dominican Republic. I was able to meet Virgilio Cabrera who recently ran the London Marathon in support of the foundation. Can you tell me about Virgilio running for Aprendiendo A Vivir and how will your partnership with him benefit the foundation?
Since 2012, AAV started a collaboration program with JDRF UK. We support a Global Initiative like JDRF UK in continuing to look for a cure for diabetes, and locally we keep proving to Dominicans that diabetes is preventable or controllable if you are living with it. In 2013, four Dominicans (one with T1 diabetes) completed London’s Virgin Marathon. This year Virgilio completed the same race. All slots were given by JDRF in exchange for a donation from AAV. Virgilio himself has an interesting life story fighting diabetes with exercise. This type of story is the kind we want people to know about because it helps them see that diabetes is there and that we have to learn to live with it and fight it with lifestyle adjustments, which can be easily done.
So let’s hear form Virgilio himself about his story…
How was your experience running the London marathon and what inspired you to run the marathon for AAV?
This was my first marathon and the experience was overwhelming. Running for Aprendiendo a Vivir and diabetes in general was actually what kept me going and helped me overcome “The Wall”. My friends and family inspired me most of all. I know many people with diabetes, and one of the big is that they believe, with diabetes, they can’t do most of the things everyday people do. In my mind they are right in a way because they must have better nutrition and they have to take better care of themselves. However, this is also why they can do lots more than everyone else – they just have to believe in themselves.
Do you have a connection to diabetes?
I have two. First is my uncle who suffers from Type 2 diabetes. He lived in Providence Road Island in the USA, and was really ill and ready to give up. He came back to the Dominican Republic and started to take little walks and do little chores like going to the market and watering the plants, with help from his sister (my mother). His health started improving little by little and after sometime he started wanting to fight. He is still living with Type 2 diabetes but he is stable and under control. He continues to walk, go out with friends, and he is independent and alive.
The second connection to diabetes is my own. I was never diagnosed with diabetes but I was borderline. I was overwhelmed and busy with work, had problems family and other everyday problems. This led me to forget about myself and my health. I did a lot of unhealthy eating and drinking until exactly a year ago, when I decided to do a 10K race in my hometown. Since then I have lost close to 80 pounds and my sugar, cholesterol, and body fat percentage are well under control. I am no longer at high risk for Type 2 diabetes.
What do you think is the biggest obstacle for people living with diabetes in the Dominican Republic and what can we do to support a better life for people living with diabetes?
In the Dominican Republic the basic problem is that most of the time the medicine is unreachable and/or too expensive. People diagnosed with diabetes are told they need to live a more healthy, organized and simple life, but at the same time that is the most expensive option.
People try to find other less expensive ways or they ignore their need for treatment just because they can’t find a way to cover the costs. Organizations like AAV can make a big difference.
What are your plans for the future in terms of your activities and support of Aprendiendo A Vivir?
My plans are to keep on achieving new goals. Next is a half-ironman race. I would really like to complete it for the foundation in order to bring more awareness of diabetes and to show that everybody can live a healthy life if they set their mind to it.
Thank you so much, Virgilio, and well done on your completion of the London marathon! Now back to Jose…
What does it mean for you and Aprendiendo A Vivir to have someone push themselves to the limit for the cause of your foundation?
In a certain point of view everyone who lives with Diabetes has to push it self to the limit to understand and overcome the impact of living with this condition. Having said that, it is so rewarding to see others doing it for our cause. It means there are many more willing to help and to show our kids that they have to be strong and fight for their cause to live a healthy life.
You also partner with the organization AYUDA. As a volunteer with AYUDA myself, I am particularly interested in that partnership. How do you feel about having AYUDA volunteers each year and how has the partnership helped your organization?
First, AYUDA is more than a partner. It is our American Sister Organization that has helped us grow stronger and more sustainable. Thanks to Ayuda, today AAV has a very strong asset: our Young Leaders program. Through them I see the future of our organization guaranteed. More than a dozen of our Dominican youth Type 1 diabetes leaders are working in AAV and their local communities fighting diabetes.
Second, but second to none, AYUDA’s volunteer work in the DR every year gets stronger and better able to deliver to every program we put on. In Ganemosle, volunteers have an important role in all functions of a massive awareness campaign, including the closing event which is a 10K/5K Run/Walk in the DR Botanical Garden. For our Diabetes Camps, the volunteers lead all types of activities that offer knowledge about Diabetes and improve practices on getting better control of it. Volunteers have also offered a lot through outreach in Dominican communities outside of Santo Domingo. For the World Diabetes Day Program, volunteers form part of a Youth Led Awareness Program on Diabetes by visiting a couple dozen Schools and Colleges to educate more than 2,000 students about diabetes and how to prevent or live with it.
What is your vision for the foundation and your hopes for people with diabetes in the future?
My Vision for AAV is to grow as big as our country needs and to offer every person living with Diabetes a Centre were they can find not only access to all their medication and strips but also Education – both are key elements in controlling diabetes and living a healthy live. I would also like AAV to be a model organization in our Region. Our youth have to stand up and lead changes that benefit our people who need help.
Finally, what is the best way for people reading this to help or get involved in the foundation and make a difference to the cause?
AAV is accessible through social media such as Twitter, Facebook and Instagram at @ganemosle and our webpage www.ganemosle.com. The best way to donate to AAV programs from abroad is through our sister foundation AYUDA. Any amount you can give us through them is greatly appreciated, so help us keep changing Diabetes in our country!
Thanks so much to Jose for taking the time to tell readers about AAV and to everyone who works and volunteers for the organisation and makes a difference to people with diabetes in the Dominican Republic!