We’ve been traveling the world for the past year, bringing you different perspectives on life with diabetes with our Global DiabetesSeries. This month, we’d like to introduce you to Mila Ferrer, who lives in San Juan, Puerto Rico, with her husband and three sons. Puerto Rico is closely tied to the U.S., as it is a commonwealth, but it is also distinctly different.
Currently working as Director of Operations for Fundación Dulces Guerreros, an organization for people with type 1 diabetes, Mila shares with us what makes life with diabetes so different on this island located 1,000 miles due southeast from Miami.
A Guest Post by Mila Ferrer
Hola a todos! My name is Mila, I was born and raised in the tropical island of Puerto Rico. Our island is located in the Caribbean, it’s surrounded by beautiful beaches and our warm climate allow us to enjoy them all year round.
A lot of people are confused about whether or not Puerto Rico is a state. No, Puerto Rico is not a state, but rather a commonwealth of the United States. This status provides local autonomy to the island and allows Puerto Rico to publicly display its flag. Are Puerto Ricans U.S. citizens? Yes, we are U.S. citizens, and make up about 1.3% of the total population of the United States. We enjoy all the benefits of citizenship, except one: Puerto Ricans who live in Puerto Rico cannot vote for the U.S. President in the general elections (those who live in the United States are allowed to vote). A few key facts:
- Puerto Rico’s currency is the U.S. dollar
- Puerto Ricans serve in the U.S. Armed Forces
- The island uses the U.S. Postal Service
- The American flag flies over Puerto Rico’s Capital
But there are also a few differences in how diabetes is managed, which I’ll explain shortly.
In 2001, my husband and I decided to move to Florida seeking a better quality of life and looking for that special place where we would settle with our growing family. Our family kept growing, as in 2002 our third son, Jaime, was born. We were thrilled! Three gorgeous and healthy boys.
In 2006, at the early age of 3, Jaime was diagnosed with type 1 diabetes, a condition unknown to us until that moment. This was a complete shock and surprise to our family. But fortunately, we received an excellent education and support from the multidisciplinary team at our endocrinologist’s office. We were empowered to take control of Jaime’s diabetes and this resulted in a family of diabetes advocates.
Meanwhile, the economy was affecting our family time together; my husband was traveling more than usual to Puerto Rico, so we decided to move back to the island. My first thought was; “What about Jaime’s diabetes?”, “Will I be able to find a good endo?” You may wonder why, since PR should be pretty similar to the U.S. if they receive federal funds for Medicare and Medicaid.
The reality is that the system is not working. We knew things were going to be different, but our findings were a real shock. (I am talking about type 1 diabetes, since is the condition that we are dealing with.) Let me start by mentioning the fact that there are only 12 pediatric endocrinologists in the island, with a population of almost 4 million people. According to the latest CDC numbers, diabetes prevalence on the island is 13% (520,000) of the population. Estimates indicate that 90%-95% have type 2 and 5%-10% have type 1. This means that 26,000-52,000 people live with type 1 in PR and 80%-85% of them (21,000-44,000) are pediatric patients. If you take these figures and realize that there are only 12 pediatric endos on the while island, you will understand why the patients lack quality service! Without forgetting to mention that these endos don’t have a CDE, nutritionist, social worker or someone in their office to provide ongoing education. The system in PR is physician-centered and not education-centered.
What are families doing to cope? If a family has the means to fly to Boston, Florida, Philadelphia or anywhere in the U.S. to receive better treatment and education, they don’t think about it twice. But that is only a very small percentage of the families, so how does a family deal with this lack of service, support and education? They just try to survive, doing the best they can, one day at a time. This is were my I hope that my blog starts to meet the demand for support and education. We also started organizing monthly meet-ups to provide another way to offer support and education to families and patients.
But this is not enough and I keep asking myself, ‘Why, if we have the same insulins, meters, insulin pumps and CGM’s as any other state in the U.S., our patients are so poorly controlled in their condition?’ Simple and easy answer: lack of education. There is no structure for education and support! Did I mention that we only have 20 CDEs in all of PR?! And out of those 20, none of them work in a clinical setting. The vast majority work for the pharma industry and the rest of them for the federal government at the VA clinic. Other U.S. states with similar population to PR have anywhere from 300 to 700 CDEs.
Health insurance coverage is another big obstacle. The government of PR receives funding for Medicaid but the benefits are much less those in the U.S. Private insurance is expensive and it’s difficult to get approval for vital items to better manage the condition. Unless you have the military or federal health insurance you don’t have test strips covered. WHAT!? Not even a single box! Private insurance companies do not cover the test strips either, but sometimes they do cover the really expensive insulin pump. Go figure… How am I supposed to check my kid’s blood sugars? We have families that only monitor their kid’s blood sugar once or twice daily because it’s too expensive for them.
We were using MDI’s (multiple daily injections) for the first four years, and now for the last two, we have been using an insulin pump. I couldn’t be happier with his treatment and my son’s A1Cs. The next item on our wishlist is the CGM. At age 9, Jaime is still very young and his nocturnal hypos are our biggest concern.
Now after telling you guys all the bad things about living with diabetes in PR and how frustrating it has been, I’ll present OUR plan to try to help. I started blogging a year ago, and I never imagined the impact our experiences would have on other Spanish-speaking families, not only in PR but in the U.S., Central and South America, Mexico, Spain and many other countries. As I mentioned earlier, the stories we get to know every single day, made us realize that we needed to do something to help improve the quality of life of these patients and their families through education. But what? How? Where? All these questions came to our minds.
We needed to start somewhere, so last March we had our first meet-up for families. Since we didn’t have sponsors or anything we only invited 10 families. We chose 10 families that we knew where struggling and needed that helping hand to guide them to the right path. A couple of companies in the food industry provided us with some snacks, and there I was calling old friends who I knew could help. A psychologist, one of the CDEs I mentioned earlier who works with a pharma company (she is type 1 herself) and some families that I know want to make a change for the patients. What a great experience! The families met each other, their kids and siblings were able to meet other kids going through the same situations. The meet-up was a success! So after the first one, we decided to organize the meet-ups once a month. Every single one of them has been a new experience for the families, making them feel special and most importantly: they know they are not alone.
With the help of our endocrinologist, who is also a family friend (who works at the Florida Hospital) we are in the process of developing a multidisciplinary educational center for patients and their families. We want these families to feel secure and supported. We want to provide education and support from CDEs, dietitians and social workers, and work hand-in-hand with their endos. Families will have a place dedicated for them, so if they have doubts, questions or just need to speak to someone we will be there for them. This beautiful project is very ambitious, but we want to see it become a reality. Our family knows first-hand the important role that education and commitment play in the management and control of type 1 diabetes.
Thank you for your hard work, Mila, and we know Puerto Rico is in good hands!