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Image via Gabriela Rivera Martínez

“If being a teenager is tough, imagine being a Latino teenager with type 1 diabetes.” Silly, I know. All teenagers struggle, some mightily. Yet, I know that having diabetes had an impact on my adolescence.

Being diagnosed with type 1 diabetes (T1D) at age 5 took a toll as I grew up. High school was rough for me. Pricking my finger before eating or between classes was embarrassing, not to mention the injections.

Thankfully it didn’t seem to matter to my friends, but it did to me. Hiding in bathroom stalls to eat a candy bar became an everyday occurrence.

After school, my mom would ask me how my blood sugars had been, and I would say, “Great.” However, my confidence and appearance said otherwise. In fact, I gained more than 30 pounds between 9th and 12th grade.

For some reason, I could not wrap my mind around the fact that T1D lasts forever. There is no cure, and on top of that, I did not have any role models.

My parents mentioned Nick Jonas and sure, he is a well-known celebrity with T1D, but I was still unhappy. Where are the Latinos? Why the lack of diversity? Honestly, not much has changed since then.

Fast-forward to college. I was heading to class when I came across a (non-Hispanic) friend I had not seen in a while. We exchanged a few words, and he mentioned that he had recently been diagnosed with T1D. This was unexpected, to say the least.

We said our goodbyes and promised to stay in touch. Suddenly, I realized that T1D does not discriminate on the basis of race, color, nationality, age, or religion.

At that moment, I decided it was time to face my demons and take control of my life. I have diabetes, but diabetes does not have me.

As of 2018, the U.S. Census Bureau reported that 58.9 million Latinos live in the United States, making up 18.1 percent of the nation’s total population.

Mexicans, Puerto Ricans, Cubans, Salvadorans, and Dominicans are the largest Latino population groups in the United States, with more than 2 million people in each group.

Other Latinos, such as Colombians, Hondurans, Spaniards, Ecuadorians, Peruvians, and Venezuelans, constitute less than 1.5 million people each.

What percentage of these U.S.-based Latinos have diabetes? According to AARP and new findings from the Centers for Disease Control and Prevention (CDC) published in the Journal of the American Medical Association (JAMA), it’s estimated that 22 percent, or 13 million Latinos in the United States, have diabetes compared to 19 percent of Asians, 20 percent of Black people, and 12 percent of white people.

To date, it’s unclear what percentage of Latinos receive T1D diagnoses versus other types of diabetes. In fact, overall, there are no estimates of how many people in the United States have T1D.

A 2020 study published in the journal Epidemiology confirmed that “there are no estimates of the population prevalence of type 1 diabetes mellitus in diverse Hispanic/Latino groups in the U.S.”

However, from the 16,415 participants examined, the researchers concluded that “people of Hispanic/Latino origin with type 1 diabetes may experience poor glycemic control, indicating a potential target for intervention.”

Meanwhile, Spanish is the second most common language in the United States, with an estimated 41 million speakers.

According to the 2018 Census survey, 29.9 million Spanish speakers also speak English “well” or “very well.” But what happens to the rest of Latinos with diabetes in the United States who speak little to no English?

Language barriers pose a serious challenge when it comes to providing high-quality medical attention.

On one hand, many healthcare institutions provide in-person or remote interpretation services. On the other, translation tools such as Google Translate have increased the satisfaction of medical providers and patients when interpretation services aren’t available.

Despite these resources, Latinos are still at risk of having higher A1C levels compared to non-Hispanic white people with diabetes. Other factors that may contribute include:

  • employment and income levels
  • lack of access to diabetes education programs

Recent research published in the journal Diabetes Technology & Therapeutics suggests that Hispanic/Latino and other nonwhite people with diabetes are far less likely to use the most advanced diabetes tools, like insulin pumps or continuous glucose monitors (CGMs), than their white counterparts.

The study authors suggest that these disparities aren’t based only on socioeconomic or even diabetes-specific factors.

In fact, they issue a call to action: “Future work should examine minority… preferences, provider implicit bias, systemic racism, and mistrust of medical systems help to explain disparities in diabetes technology use.”

One important factor in this trend is the barrier of language, especially the use of Spanish by the patient or patient’s parents as a primary language.

Findings include that:

  • People with T1D with English-speaking parents were more likely to use insulin pumps than people with T1D with Spanish-speaking parents.
  • Latinos were less likely to use an insulin pump or CGM compared to non-Hispanic white people.

It was also concluded that “racial/ethnic disparities in diabetes device use may be perpetuated by subconscious racial stereotyping by providers assessing minority patients’ preparedness for diabetes devices.”

Studies suggest that Latinos have higher rates of diabetes complications, such as retinopathy and neuropathy, which lead to higher rates of lower leg amputations, than non-Hispanic white people.

The question is, what can be done to change this trend?

First of all, insulin pumps and CGMs must be seen as a necessity and not a luxury. These medical devices are known to lead to better diabetes management and fewer hospital visits.

Issues such as language barriers and lack of access to diabetes tools like CGMs and insulin pumps must be addressed for not just the sake of every Latino living with diabetes, but for the well-being of all people living with diabetes.

All of this is especially frustrating for Latino people like myself who grew up with diabetes. Many people assumed I had to eat an extremely strict diet. No pizza, no soda, and God forbid, no cake for birthdays! This, of course, is an exaggeration.

Meanwhile, for Latinos, food and cooking are ways to demonstrate love. Did someone say rice and beans? Sign me up!

But while food and culture might be intertwined, that doesn’t necessarily mean it’s the same in all Latino families.

Just like Salvadorans love their pupusas, Puerto Ricans certainly can’t live without tostones. Food is certainly a common denominator among Latinos, but let’s not confuse our passion for cooking with culture. Not all Latinos share the same culture.

Mila Ferrer, who hails from Puerto Rico, and is a program manager at BeyondType1 and mother to Jaime, who was diagnosed with T1D at age 3, agrees.

“It’s imperative to know and understand that there is diversity among Hispanics, and we are not all the same,” she says. “The differences in diabetes prevalence among Hispanic subgroups are masked when we are combined into a homogeneous group.”

Healthcare providers especially need to understand what culture means to Latinos while recognizing that we’re not all the same.

Many providers have a passion for medicine but lack what’s known as “cultural intelligence.”

David Livermore, PhD, from Michigan State University, describes cultural intelligence as “the capability to function effectively across national, ethnic, and organizational cultures.”

For example, many providers may not be aware that because of our cultural norms, Latinos often dread going to medical appointments. I would be the first person to raise my hand on that one.

The fear of being judged because of my glucose numbers or criticized because of what I ate made me extremely nervous to the point that, for many years, I preferred to “eat my feelings” and hide away from the care I needed.

This is why representation matters. More Latino voices are needed in the Diabetes Community. Having someone to look up to when I was a teenager would have helped me have hope.

If you do a Google search for “Latino celebrities with type 1 diabetes,” I’m sure only one name will pop up: U.S. Supreme Court Justice Sonia Sotomayor.

Born in the Bronx, New York, to Puerto Rican parents, Sotomayor was diagnosed with T1D at age 7. Even as a small child, she gave herself an insulin shot before every meal to help manage her blood sugars.

Appointed to the Supreme Court by President Barack Obama in 2006, Sotomayor has become a role model for many Latinos and the T1D community in general.

Last year, I remember coming across an article about Sotomayor’s children’s book, “Just Ask! Be Different, Be Brave, Be You.”

The article mentions how Sotomayor felt inspired to write this book after an unpleasant experience at a restaurant. After being called a “drug addict” by a woman when injecting herself with insulin, Sotomayor felt empowered to share her story with children who, at times and because of their medical condition, probably feel different as well.

It’s heartening to see how T1D never stopped this woman. So why should it stop the rest of us?

As I finished writing this article, I realized that being a Latina with T1D is not an impediment. On the contrary, it motivates me to keep moving forward.

More Latinos with T1D need to be a voice for the voiceless. In other words, we need more Sonia Sotomayors.

If she can become the first Latina to be appointed on the U.S. Supreme Court, who says we will not succeed?

Gabriela Rivera Martínez is from San Juan, Puerto Rico, and has lived with type 1 diabetes from the age of 5. Currently, she is completing a Master of Professional Studies in Conference Interpreting at the University of Maryland, College Park. A native Spanish speaker, Gabriela plans to focus on healthcare and legal interpretation.