Samantha Almeida was working at a furniture store the summer before her junior year at Denver’s Thomas Jefferson High School, when her bosses started noticing signs that Samantha might have diabetes before she did.
Almeida would ask for extra bathroom breaks from her cashier’s station because she was drinking so much water. She seemed tired all the time. But her bosses weren’t interested in the root causes. They fired her.
In the fall of 2017, Almeida fainted at school. She woke up in the hospital, where doctors told her that her blood sugar was far too high. More tests came back, and they told her she had Type 1 diabetes — a surprise since there was no family history of the potentially debilitating disease. (Type 1 diabetes, in which the body stops producing insulin, occurs often in childhood, possibly from a combination of genetic and environmental factors; Type 2 diabetes—in which the body stops responding to or producing enough insulin—is more common, usually occurs later in life and is associated with obesity, poor nutrition and/or lack of exercise.)
The next two months were upsetting not just to Almeida, but her family as well. Diabetes management can be overwhelming, with the education, the constant blood testing and monitoring, the shots, the cost of insulin, the medical appointments, the every-bite nutrition calculations.
“At the time, we didn’t have enough money for the pump” — an implanted reservoir of insulin that is an enormous improvement over the traditional injections — Almeida said. But the lessons on her new lifestyle started to make sense, and she eventually was told that health insurance would pay for a continuous glucose monitor and the pump.
Almeida grew confident and experienced enough managing her treatment that school officials asked her to be a peer mentor for other students coping with the disease, some of them newly diagnosed. “It’s been like a roller coaster,” she said, “but I’m feeling good.”
Starting on the wrong side of the statistics
Almeida, who is Hispanic, started on the wrong side of seemingly immutable diabetes statistics —12.5% of Hispanics and 11.7% of non-Hispanic Blacks in the U.S. have diabetes, compared to 7.5% of whites. American Indians and Alaska Natives have a 14.7% diabetes rate, with rates in some individual tribes higher than 40%.
From 2002 to 2010, “Hispanic children and youth had the largest significant increases in incidence of type 1 diabetes,” per a 2020 report on diabetes prevalence and trends by the Centers for Disease Control and Prevention. From 2011 to 2015, the biggest rate increase in Type 1 cases was among non-Hispanic Asians and Pacific Islanders; overall, Type 1 case rates are highest among white children, while Type 2 cases are highest among children of color.
Access to the most advanced treatment also has racial disparities: 39% of Hispanic children had insulin pumps in a Pediatrics study of thousands of patients, compared to 61% of white patients and 26% among African Americans. Almeida beat the odds through Medicaid and Denver Health, and with careful attention from school-based health care providers.
The racial and income gaps in diabetes management and care access are worse than ever in the context of the COVID-19 pandemic. People of color in Colorado and other states are dying from the virus at disproportionately high rates — in part because they are more likely to have untreated, underlying conditions like diabetes, which significantly increases risk of hospitalization from COVID-19. Loss of jobs and health insurance, again falling more heavily on people of color and lower-income wage earners, can make insulin and other health care necessities further out of reach. (Even among those still employed, wages among essential workers show stark disparities among race lines across all industries, per 2019 data.)
“We all have to attack this head on. And I am hopeful that this pandemic has showcased for all Americans that the things we are talking about are human rights,” said Tracey Brown, national executive director for the American Diabetes Association (ADA). “We know that every five minutes, someone is having an amputation because of diabetes. Someone is losing a limb. Now, we have to act to make sure things are done differently.”
Inequity in Colorado diabetes prevalence and treatment is clear from two reports drilling into local data.
Rate of diabetes is 68% higher in Adams County than in Douglas County
Maps of diabetes prevalence developed by the Colorado Regional Observation Health Data Service show much higher rates of diabetes in Denver metro-area communities with higher percentages of people of color and low-income residents. For example, Denver and Adams counties rates are 9.6% and 11.1% of the population, respectively, while Douglas and Boulder counties are 6.6% and 7.6%. That means the rate of diabetes in Adams County is 68% higher than in Douglas County.
Patients losing limbs to diabetes, as Brown mentioned, also happens at inequitable rates in metro Denver. A different set of data, in the Dartmouth Atlas of Health Series on diabetes studying Medicare patients across states, showed the rate of limb amputation from diabetes complications in the Denver area at 4.7 per 1,000 patients among Blacks, and 2.1 amputations per 1,000 patients for non-Blacks.
The imbalance extends to proactive diabetes interventions as well. Consistent cholesterol testing is a top protocol for optimal diabetes management—arterial blockages from fatty plaque lead to poor circulation in diabetic patients, increasing the chances of limb deterioration and, eventually, amputation. The Dartmouth study showed that 77.1% of non-Black diabetic patients in the metro area received cholesterol tests, versus only 68.1% of Black patients.
Colorado has been among the leaders in attacking one glaring inequity in diabetes care: the price of insulin, which can run to thousands of dollars a year. Patient advocates say Colorado’s 2019 bill capping the consumer’s out-of-pocket monthly insulin cost at $100 per prescription was the first of its kind in the nation, and other states and federal insurance programs are now making similar moves.
“It’s our goal to keep pushing until we get 50 states across the line,” said the ADA’s Brown. Advocates are also working with congressional leaders to get a zero-copay provision for insulin into Medicare, whose rates and rules are often followed by private insurance.
Lowering the cost of diabetes treatment is more important now than ever, Brown said, with COVID-19 having cost so many lower-income workers and people of color their jobs, and with the virus striking hardest at people with high rates of comorbidities like diabetes: “Those are the places we are leaning in, because it’s just so important right now to save lives.”
The price of insulin doubled in four years
Colorado Attorney General Phil Weiser is conducting a statewide patient survey of diabetes treatment and cost experience, as required by the 2019 insulin cap bill.
“Between 2012 and 2016, insulin prices doubled,” Weiser said in an interview. “In normal competitive markets, that doesn’t happen.
“As a moral matter, I don’t believe we should be in a situation where peoples’ lives are on the line and they are literally making life-and-death choices. We should make sure that everyone who needs [insulin] can get it and make it affordable. That’s an imperative and we take it very seriously.”
The attorney general and state lawmakers want to know from patients how prices vary by region, insurance provider or manufacturer; whether consumers are forced to make life-changing spending choices because of high costs; how they have tried to lower costs with “workarounds” (e.g., manufacturer coupons, or even stretching an insulin prescription over a longer period of time—a potentially life-threatening cost-savings tactic); and whether some populations experience these facets of the health care system differently than others.
In the face of systemic inequities in prevalence and experience of diabetes in Colorado, health care providers come up with their own methods to close the gaps.
Dr. Andrea Gerard Gonzalez is an assistant professor of pediatrics at the University of Colorado School of Medicine, and pediatric endocrinologist at the Barbara Davis Center for Diabetes. After finishing medical school in Mexico City, Gerard Gonzalez first practiced in a tiny village in the southern Mexican state of Chiapas, with no running water or electricity, three hours’ drive from a hospital. When her first Type 1 diabetes case arrived on her doorstep, she had to keep insulin chilled by putting it in a cold river, in the same watering hole where she kept her Diet Cokes.
In the Denver metro area, Gerard Gonzalez concentrates on the disproportionately high number of childhood diabetes cases in the Latinx community, including helping newly diagnosed Type 1 families cope with the sudden demands of multiple appointments, constant glucose monitoring and self-administering shots, not to mention a complete nutrition overhaul.
Many of the families she works with have mothers holding down three jobs, Gerard Gonzalez said. Diabetes care at home is often given by older siblings and grandparents. Providers, meanwhile, are too stretched to spend hours of one-on-one time helping guide families through the volumes of information on nutrition, blood monitoring, new technology for insulin pumps, and extra medical appointments.
“It broke my heart because I came to one of the best places, and yet I discovered one of these huge disparities in outcomes and treatment of what Spanish-speaking patients were getting compared to everyone else,” Gerard Gonzalez said.
Few Spanish speakers got insulin pumps
Almost none of the center’s Spanish-speaking patients were getting the modern standard care of continuous monitoring and insulin pumps, Gerard Gonzalez said. So she and the center instituted group diabetes sessions, with up to 10 families in each, and invited siblings, grandparents and other caregivers. Sessions are led by providers and nutritionists who, like Gerard Gonzalez, are bilingual.
Six years after beginning to practice in Colorado, Gerard Gonzalez said, none of her patients at the Barbara Davis Center are currently on the less effective, short-acting insulin. A study she co-published in the journal Diabetes found that after two years of the special program, the percentage of Hispanic patients under 12 using the optimal pump technology grew from 17% to 40%.
With western Indigenous peoples reporting the highest diabetes rates of any racial or ethnic group, culturally sensitive medicine and education programs have worked for years to improve those rates. The Colorado School of Public Health’s Centers for American Indian and Alaska Native Health works all over the West — not only on reservations, but in urban settings “where 72% of American Indians live,” noted director Spero Manson, Ph.D., who is also a professor of public health and psychiatry. (Manson occupies The Colorado Trust Chair in American Indian Health within the Colorado School of Public Health.)
Type 2 diabetes in children has been considered an epidemic in Indigenous populations, Manson noted. But after decades of reform, including tribal and federally funded health services paying for extensive screenings for risk factors, obesity and diabetes rates are finally showing signs of reversing in those communities, Manson said.
“After years of increasing, the percentage of American Indian and Alaska Native adults with diabetes consistently decreased from 15.4% in 2013 to 14.6% in 2017. This represents a 5.2% decrease in prevalence,” according to a 2020 study published by the Indian Health Service.
“That doesn’t mean this epidemic is over, by any means,” Manson said. “It means these kinds of interventions we were able to mobilize are having an effect.”
Colorado families with immigrants from northern Mexico have additional challenges managing diabetes, said Dr. Richard Gonzalez, a physician licensed in Mexico who handles a public health screening and education program, called Ventanilla de Salud, out of the Mexican consulate in Denver. The arrangement is supported by Servicios de la Raza, a Denver-based, Latinx-focused health and human services provider.
Gonzalez surveyed and screened nearly 800 visitors to the consulate’s health center, and found 69% had some family history of diabetes. Thirty-five percent of females and 21% of males in the screening scored high-risk on an international scale, Gonzalez said, including a 40% obesity rate among the respondents.
The survey revealed common barriers to care among these largely Spanish-speaking patients, Gonzalez said:
- Patients are uncomfortable talking through an interpreter. They want to give and receive health information directly in their first language, while Colorado clinics have a shortage of fluent Spanish-speaking providers.
- Forty percent of the consulate visitors were uninsured.
- Existing diabetes patients often return to Mexico to buy insulin, staying there or risking re-crossing, or ask relatives to bring insulin north. (The price of insulin in Mexico is typically hundreds or even thousands of dollars less per month than in much of the United States.) Some even return to Mexico for dialysis treatment for end-stage kidney disease, a common complication for diabetes.
- Many respondents felt getting more involved in the U.S. health care or insurance systems would increase their risk of contact with immigration enforcement.
A large portion of the people who visit the consulate for health education are undocumented, Gonzalez said, barring them from Medicaid or Medicare. Extending Medicaid to undocumented people—a highly controversial, long-debated subject—would certainly help, he said. Barring that, though, he suggests the U.S. allow undocumented people to use Medicaid and then bill the government of Mexico for the costs.
As a diabetes peer mentor for Denver Public Schools, Samantha Almeida figures she’ll have plenty of work to do, indefinitely. It’s hard enough to get teenagers to take actions that will protect them in the long term, let alone in something as complex and demanding as diabetes care.
“One girl wouldn’t give herself insulin because she thought she’d be OK” without it, Almeida recalled. “But the more you eat without insulin, your A1C [blood sugar] goes up, and the more damage your body is doing to yourself. So I worked with her on how to count carbs and calories. And sometimes she wouldn’t eat throughout the day, and I would tell her she needed to eat.”
A buddy system helps young people diagnosed with diabetes from feeling overwhelmed, she said.
“When we are first diagnosed, it’s very hard for us, and something we’re going to have to deal with for the rest of our lives,” Almeida said. “So we really need mentors there to help us deal with it.”
Freelance writer Michael Booth wrote this story for The Colorado Trust, a philanthropic foundation that works on health equity issues statewide. It appeared at coloradotrust.org on June 22, 2020.