Surviving with Diabetes in Venezuela
Editor’s Note: Carmen Sosa lives in Venezuela with her daughter Sofia, who was diagnosed with type 1 diabetes in 2008. Carmen began working as a donor mother at the hospital where her daughter was being cared for and she is now the coordinator for the Samaritan Foundation, a diabetes program established to educate, empower and obtain donations to help the ongoing diabetes crisis in Venezuela. She spoke with Beyond Type 1 about the conditions in her country for those with diabetes.
How did Type 1 diabetes become a part of your life?
Diabetes is something we relate to in my family because I have a daughter who has had type 1 diabetes for the past 11 years. Type 1 diabetes (T1D) came into our lives on September 15, 2008, when my youngest daughter Sofia Valentina was diagnosed. Since then, diabetes has become another member of our family.
What is the first problem faced by someone newly diagnosed with T1D in Venezuela?
Today in Venezuela, we are living the worst health crisis in the country’s history. A person newly diagnosed with diabetes must face the reality that in our country, there are no supplies for diabetes treatment. Although there is social security available, patients don’t have the guarantee that they will be able to obtain the necessary supplies. On the other hand, it is a fact that T1D management costs are high all over the world and also the expenses that a condition of this nature causes. But these expenses in Venezuela are not at all payable because in addition to the health crisis that we are going through, we have a serious economic crisis.
What options and resources are available for a Venezuelan with T1D? What difficulties do they face?
What we live with in Venezuela is a horror story. If your diagnosis is accompanied by ketoacidosis and you enter a public hospital, there aren’t supplies available at the hospitals to handle emergencies nowadays. You are then informed that you have diabetes and the doctor tells you that you should take insulin, but where can you get it? Then the painful pilgrimage of relatives and friends begins—they start begging to get information about where they can get insulin. You start to lose your strength in your attempts, because in Venezuela, there is no way to find insulin to keep us alive. Despite the terrible nature of this crisis, many people have managed to send us donations. These donations are given to whoever needs it, and I take this opportunity to thank each person who has believed in our goodwill to donate.
Options? There aren’t many. One is the compra revendida (purchase resell), in which a person buys it abroad and resells it in Venezuela. Then there are the donations through associations, foundations and individuals. Another one is when a parent or close family member migrates to another country, looking for ways to send back supplies for the treatment of their loved ones. At a governmental level, although there are programs dedicated to satisfy the needs of this condition, the supplies provided are not enough. As a result of this crisis, Venezuela is almost completely behind in terms of knowledge of the latest technological and pharmaceutical advances known to control diabetes, except for some specialists who have introduced these advances little by little to their patients. It is not something that every person with diabetes can have access to.
We imagine that there are people who have lost their lives because they didn’t have access to basic supplies—what is the response from the government?
Actually answering this is a problem because the government and health entities that have these statistics do not show any kind of figures. I can assure you that due to the lack of supplies there have been many emergencies, which have given place to acute and even severe complications. I have known about cases where people have spent up to two days without insulin. Also, sadly, we get information from people in critical condition who have asked for help. The entire population with T1D in Venezuela is at risk. But the vulnerable population are children and teenagers.
I can tell you that in all public hospitals in the country there is a program dedicated to dealing with metabolic diseases, among those type 1 diabetes. Nowadays, some hospitals operate with the help of foundations that look for supplies to keep the program or the unit open, in other hospitals they simply don’t work, and in others they are completely closed. That is why the role of the foundations and associations that have been developed is so important in my country, since we devote all our efforts to find supplies for this population.
What do you want people to know about T1D in Venezuela?
First, I want to thank Beyond Type 1 for being interested in making public the situation in Venezuela and the limited access to our supplies for type 1 diabetes management. As a mother of a girl with diabetes and therefore being affected by the situation we are going through, I recognize that my country needs to be rebuilt for our children to have the quality of life and wellbeing that today many of you have because in your countries, you might have more access to the supplies to manage your T1D. It is a right of life to guarantee that everyone has access to medicines and therefore a right to guarantee health to the population. In my country, this is not the case.