Editor’s Note: This article is adapted from a speech Dr. Muñoz delivered in June 2021 as President, Health Care & Education of the American Diabetes Association. She delivered her address at the Association’s 81st Scientific Sessions, which was held online as a result of the coronavirus disease 2019 pandemic. A webcast of this speech is available for viewing at https://bit.ly/3rk3Esp.
I would like to bring attention to the changing demographics of diabetes in youth. I would also like to note the impact of coronavirus disease 2019 (COVID-19), and how it has highlighted health disparities in our country. Lastly, I want to stress the importance of comprehensive care, including mental health support, to address these disparities for all people with diabetes.
Diabetes Among People of Color: It’s Personal
The story of diabetes disparities and health care disparities is the story of my own life. I am the daughter of immigrants, who came to the United States from Peru more than 60 years ago. My mother was diagnosed with gestational diabetes and later with type 2 diabetes. With proper care, she thrived. However, her brother who was also diagnosed with diabetes, struggled to cope with the daily demands of the disease and ultimately succumbed to diabetes-related complications. Later, my brother was diagnosed with prediabetes while in his 30s. With a commitment to his health, he made lifelong lifestyle changes, lost weight, and started long-distance running. I never met my husband’s parents. My mother-in-law was diagnosed with type 2 diabetes. Ultimately, lower-limb amputations took a physical and emotional toll, and she died when my husband was only 19 years old. My father-in-law was also diagnosed with type 2 diabetes, and he died from complicated health issues when my husband was 31. When my husband himself was diagnosed with prediabetes, I was terrified. Children should not lose parents to diabetes. Parents should not lose children to diabetes. No one should lose a loved one to diabetes.
I began my career as a mental health professional nearly 20 years ago, specializing in the care of children with diabetes. I work at an urban children’s hospital in the second largest city in the United States. Hospital-wide, ∼85% of the children we serve are BIPOC (Black, Indigenous, and People of Color). Sixty percent have limited English proficiency, and 70% are publicly insured. Currently, we serve nearly 2,000 children and youth who are diagnosed with diabetes. When we take a closer look at our patients with type 2 diabetes, 94% are publicly insured and >80% identify as Latinx. For type 1 diabetes, 70% are publicly insured, and 68% identify as Latinx. In our community, as in so many others, diabetes disproportionally affects people of color and those from low-income households, which can often, unfortunately, be one and the same.
In the Spotlight: Disparities in Diabetes Care
To motivate positive change, we must focus on improving the future for the people of these communities. For now, let me bring my perspective as a psychologist to bear on the issue of disparities in the treatment of diabetes that the COVID-19 pandemic brought to light—particularly for children and youth with diabetes.
Our world continues to fight against this global pandemic. We know that COVID-19 has highlighted disparities in health care and in the prevention and care of diabetes in adults, but inequities for children with the disease also became evident. Unfortunately, these inequities are actually independent of the pandemic, but many of us just never noticed them until now. If you are concerned about the impact of COVID-19 on adults with diabetes, you should be outraged that the same is happening to our children with diabetes.
The demographics of diabetes in children and adolescents have changed in recent years. Type 1 diabetes has been on the rise, whereas type 2 diabetes is still a relatively new entity in pediatrics. Type 2 diabetes disproportionately affects children of color, children in families with high rates of diabetes, and those affected by the inequitable distribution of social determinants of health (1). Of note, type 1 diabetes is increasing at higher rates among Asian/Pacific Islander, Hispanic, non-Hispanic Black, and Hispanic children (2). There are also differences based on sex. For type 1 diabetes, rates have increased more rapidly among males than females; for type 2 diabetes, the rate has risen more rapidly among female than male youth (2). This trend for youth with type 2 diabetes is significant, especially as we consider the impact this diagnosis will have as these teens become young women, particularly among those from under-resourced communities. They will face risks that accompany type 2 diabetes, such as decreased fertility and the challenges of managing diabetes during pregnancy. There will also be a higher risk for the development of diabetes among their children; thus, the cycle will continue.
Thanks to the discovery of insulin, we all know that diabetes is no longer a death sentence. Unfortunately, an upward trend in A1C for children and youth continues despite advances in pharmacological therapy and diabetes technology (3). Misdiagnosis of diabetes and high rates of initial presentation with diabetic ketoacidosis (DKA) also continue to be very concerning issues (4,5). The pandemic further exacerbated these problems. For example, researchers from Children’s Hospital Los Angeles identified an increase in new-onset diabetes (6). Most notably, they found that the rate of DKA for patients with new-onset type 2 diabetes during the pandemic doubled compared with data from 2018. People who experience DKA at diagnosis are at risk for poorer outcomes (7).
Timely diagnosis and symptom management became more difficult during the pandemic because children stopped going to well visits, and there was hesitancy to go to the emergency department for acute illness. Stay-at-home orders and physical distancing guidelines also contributed to a decrease in opportunities for physical activity. With schools closed, families also lacked access to school-based health supports. With reduced employment opportunities, families experienced more difficulty buying diabetes supplies and food.
COVID-19 also turned a spotlight on some key existing health disparities. Early in the pandemic, education, health care, support, and almost all other aspects of life became largely accessible only via the internet. Thus, the pandemic exacerbated the digital divide, as some in under-resourced areas also had less access to the very technologies—telehealth visits, online education, insulin pumps, and continuous glucose monitoring systems—needed to optimally manage their health during this crisis. Recent data have shown us that children with type 1 diabetes from low-income families and minority racial/ethnic groups have the lowest diabetes technology use and highest A1C (8–10).
Facing the loss of employment and financial challenges, some people with diabetes experienced decreased access to the medications needed to save their lives. According to data from a June 2020 survey on diabetes and COVID-19 conducted by dQ&A for the American Diabetes Association (ADA) (11), approximately one in four people with diabetes ration their insulin use because of financial limitations. Youth residing in under-resourced communities also experienced crowding and multigenerational living (12). They saw vulnerable adults become ill with COVID-19 and die because of underlying higher rates of exposure to the virus at work (11) and because of more comorbidities like diabetes, obesity, and hypertension (13).
Mental Health Effects of Diabetes and COVID-19
As a psychologist, I have seen the ways in which the increased prevalence of diabetes, and disproportionate effect of COVID-19 on people with diabetes, have affected the mental health of people in this population. There is a known bidirectional relationship between mental health and diabetes management (14,15). Pre-pandemic data from the T1D Exchange Quality Improvement Collaborative showed that there are up to five times more depressive symptoms in adolescents with diabetes than in the general population (16). Depressive symptoms are associated with higher A1C and increased short-term complications (15). In turn, increased risk and progression of complications can further exacerbate mental health issues.
It seems obvious that the mounting mental health burden brought on by COVID-19 has had a negative impact on diabetes management and outcomes, including A1C and the development of comorbidities and complications. Unfortunately, access to optimal treatment, appropriate education, and mental health support—let alone preventive interventions—was not and is still not able to keep up with demand, especially in under-resourced communities. Furthermore, access to mental health treatment is negatively affected by stigma, particularly in the most-affected communities (17).
We know from emerging news and data that there has been a significant increase in psychosocial and mental health challenges since the beginning of the pandemic. Increases in unemployment and financial struggles, reduced access to health care and education, shortages of food and supplies, and lack of social support have increased anxiety, depression, and substance use and exacerbated other preexisting mental health issues in adults (18).
We are seeing similar trends for children and adolescents. In fact, in May 2021, the chief operating officer (COO) of Children’s Hospital Colorado in Aurora declared a “pediatric mental health state of emergency” because the hospital’s pediatric emergency departments and inpatient units were “overrun with children and youth attempting suicide and suffering from other forms of major mental health illness” (19). The COO said that acute behavioral health presentations had increased 90% in 2021 compared with 2019. A few months later, the American Academy of Pediatrics (AAP), the American Academy of Child and Adolescent Psychiatry (AACAP), and the Children’s Hospital Association also declared a national emergency for children’s mental health (20). This could suggest that other hospital systems across the country are likely experiencing the same frightening trend.
Across the country, the school community has not seen millions of children since the spring of 2020 when schools closed because of the pandemic (21). There is also a subset of children with diabetes who have not been seen in person by pediatric endocrinologists or other health care providers, although one hopes they have been seen via telehealth during this time. As pediatric diabetes care providers, we do not necessarily know what has been transpiring during the pandemic. Are our patients’ parents and guardians well and able to provide the support these children need? Do our patients have food, let alone healthy food? Are their families experiencing financial strain, depression, substance abuse, or domestic violence? There is so much to worry about.
What we have learned through research (22–25) is that children and teens have reported significantly lower health-related quality of life and more mental health problems, including higher levels of anxiety and depression, than before the pandemic. This impact has been greater for children with low socioeconomic status and migration backgrounds. Researchers have also found that people with diabetes who experienced higher levels of worry about COVID-19 could be more vulnerable for diabetes distress, hyperglycemia, depression, and anxiety (25). Thus, psychological support has become more important than ever.
My mental health colleagues and I have been increasingly busy since the start of the pandemic. As a psychologist who specializes in pediatric diabetes, I have seen an increasing number of patients, both in person and via telehealth; the good news is that these children have had access to specialized mental health support.
Empowering Youth at Children’s Hospital Los Angeles
Clinics and hospitals across the country are seeking both short- and long-term solutions to help their patients and their communities. At my clinic, the Comprehensive Childhood Diabetes Center at Children’s Hospital Los Angeles, we did our best to reach out to and remain connected with our most vulnerable populations. Our patients had access to individual, family, and group psychotherapy. They had the option of in-person mental health services, and individualized onboarding to digital platforms was provided as needed.
One psychosocial program we offer at my hospital is called TEEN POWER (26,27). In 2006, Dr. Lynda Fisher and I cocreated this program for adolescents with insulin-treated diabetes, as well as parallel groups for their parents, guardians, and siblings. TEEN POWER is designed to address the unique developmental, behavioral, and cultural challenges faced by youth with insulin-treated diabetes. It brings small groups of families together for social-emotional and peer support. To reach a broader population, we later expanded the program to include school-aged children. Our program now offers groups for children aged 6–11 years, adolescents aged 12–18 years, and their families. Originally designed for children with insulin-treated type 1 or type 2 diabetes, the program shifted its focus in 2018 to type 1 diabetes exclusively in response to changes in funding resources.
The program’s overall goal is to improve participants’ mental health functioning, and participants develop specific goals to promote their own optimal diabetes management and emotional well-being. TEEN POWER participants include children who often struggle with the daily demands of diabetes because they feel different from their peers who do not have diabetes. Furthermore, some teens feel dependent on the numerous adults who oversee their diabetes management, such as parents, guardians, school nurses, and their diabetes care team. Although support from adults can be beneficial, our teens sometimes feel that other people cannot possibly understand their experience unless they, too, have diabetes. To increase the level of peer support and empathy within the TEEN POWER groups, older youth who previously participated in TEEN POWER join group sessions to share their lessons learned with newer participants.
Because most of our patients identify as Latinx, parent and guardian groups are offered in both English and Spanish. This feature facilitates our ability to talk openly about common culturally relevant health beliefs.
Our data, summarized in Figure 1, suggest that:
Participation in this program promotes a reduction in the severity of depressive symptoms among participants who express elevated symptoms before joining the program.
TEEN POWER helps to reduce parenting stress among the caregivers who express having clinically elevated stress before joining the program.
TEEN POWER promotes an increase in self-efficacy for youth, which in turn is correlated with reduced depressive symptoms.
Participation in the program promotes improved diabetes-specific quality of life. Participants have reported a decrease in problems and symptoms that negatively impact their diabetes management. Furthermore, caregivers who expressed greater symptoms before participating in TEEN POWER subsequently reported a decrease in the severity of symptoms and concerns with diabetes management.
Most TEEN POWER participants are publicly insured and reside in zip codes with limited green space. We strive to provide comprehensive care that addresses their unique needs by empowering youth from all walks of life. Although we developed this program well before the pandemic, after the start of COVID-19, we were able to convert it to a virtual format within 1 month of the institution of California’s Safer at Home public health orders. These types of programs are even more important during these trying times. I urge other existing programs to reexamine whether they are truly providing whole-person care that meets their patients’ needs, particularly communities that are disproportionally affected by diabetes and by COVID-19.
How the ADA Is Helping
Health care professionals and patient organizations across the country are working overtime to try to address their community’s needs. The ADA has developed national resources for people with diabetes and health care professionals, including specific programs to serve the mental health needs of the millions of Americans living with diabetes. A few years ago, the ADA partnered with the American Psychological Association to create a Mental Health Diabetes Education Program (28). This professional training opportunity aims to increase the availability of mental health professionals who are equipped to optimally treat people with diabetes. To date, 650 mental health clinicians have completed the training. The Association also created a first-of-its-kind searchable, online Mental Health Provider Directory, which currently includes more than 200 mental health clinicians (29).
For nearly 70 years, the ADA has also run camps for children with diabetes and their families across the country. During the pandemic, it launched the ADA Imagine Camp, a free virtual camp experience (30). Youth from all over the world, including Canada, New Zealand, Ireland, Portugal, South Africa, and the United States, have participated.
The ADA’s award-winning Safe at School Campaign offers legal protections for students with diabetes and comprehensive resources. In response to the pandemic, guidelines were created to support students with diabetes through these unprecedented changes in their education (31).
In 2016, the ADA published a position statement titled “Psychosocial Care for People With Diabetes” (32) and integrated psychosocial care into its Standards of Medical Care in Diabetes for the first time. Interesting fact: by 2021, the word “psychosocial” was mentioned 68 times in the Standards of Care, reflecting growing recognition of the ongoing importance of whole-person care for people with diabetes (33).
Recently, the ADA launched Health Equity Now (34), an initiative that aims to ensure that diabetes research better accounts for risks facing communities of color; make diabetes drugs, devices, supplies, and health insurance more affordable and accessible; overcome socioeconomic barriers that raise risks for people of color by increasing access to quality care for people with diabetes and prediabetes; and offer better, more culturally relevant guidance and access to healthy foods.
In addition, the ADA continues to advocate for insulin affordability, expansion of state Medicaid programs, expansion of access to diabetes self-management education and support services via telehealth, and the development of partnerships with community health workers, promotores de salud, and community health representatives.
How We Can All Help
We have learned things during this pandemic that would have taken longer to come to light. We have learned that disparities affect children, not just adults. Take a moment to reflect, and ask yourself, “Are my patients of color getting equitable care? Is my Medicaid system set up to support my patient’s unique needs?”
There is also much we still need to learn. We need to better understand the changing face of pediatric diabetes and to develop more culturally sensitive care and education materials. For pediatric diabetes researchers, please continue to help us better understand the genesis and impact of pediatric diabetes, so we can improve care and ultimately find solutions to eliminate this disease.
We also need to continue working to provide psychological support that addresses the unique needs of children with diabetes. It is important to have a mental health professional on your team. To meet the mental health needs of our growing diabetes population, we need to train more mental health professionals who work in outpatient, inpatient, and residential behavioral health treatment centers about the care of people with diabetes. This is one important way in which we need your help. Please share information about our Mental Health Diabetes Education Program and Mental Health Provider Directory far and wide. As fellow health care providers, please join me in doing all we can to eradicate these newly illuminated problems.
As I shared earlier, my family has been significantly affected by diabetes. How might the outcomes for other families be different if we all implement what we have learned? I know it would have made a huge difference for my family, and I know it can for so many others.
As we go forward, let us remember that all people deserve optimal, whole-person care. All people must have access to the tools they need to best manage their health. Let’s work together to create positive change. Together, we can make a difference because, together, we are connected for life.
First and foremost, I would like to thank all of the children with diabetes. I am inspired and humbled by their courage and determination to keep putting one foot in front of the other. I also thank the parents and guardians, who rise every day to care for their children and to cheer them on in health and in life. Thanks also go to my friends and colleagues, who have taught and motivated me to be a better source of mental health support for people with diabetes. I am grateful to the many colleagues who have supported hundreds of families with diabetes through our TEEN POWER program since its inception in 2006. I also wish to thank my mentors, Dr. Lois Van Cleve, Dr. Lynda Fisher, and Dr. Fran Kaufman for believing in me and encouraging me to reach beyond what I thought was possible.
Duality of Interest
No potential conflicts of interest relevant to this article were reported.