While type 1 diabetes is less common than type 2 diabetes, it represents 5 to 10 percent of the 34.2 million Americans who have diabetes, according to the National Diabetes Statistics Report 2020, from the Centers for Disease Control and Prevention (CDC).
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And while you might think type 1 diabetes (which was previously called juvenile diabetes) only happens in children, it can actually be diagnosed at any age and is a lifelong illness, according to the CDC.
Type 1 diabetes statistics can paint a clearer picture of this autoimmune disease, helping us better understand who has it and how prevalent it is. That's especially important because its incidence appears to be increasing around the world, according to a March 2020 paper in Health Promotion Perspectives. Here's a look at the numbers.
About Type 1 Diabetes Statistics
First, let's talk about how reporting the incidence of all type 1 diabetes cases is challenging. There are two main reasons for this: age and diabetes type. Here's why:
- Peak age of diagnosis of type 1 diabetes is around 13 or 14, according to the CDC. According to the International Diabetes Federation (IDF)'s 2019 Diabetes Atlas, type 1 diabetes is likely the major cause of diabetes in children.
- This young age at diagnosis is likely what contributes to type 1 diabetes statistics in adults being "very limited," according to the August 2018 book Diabetes in America from the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK).
- Most studies and databases — like SEARCH, the largest, most comprehensive surveillance study of diabetes in younger people in the U.S. to date, launched by the CDC and NIDDK in 2000 — break out some statistics by type 1 or type 2 diabetes, but often combine the two diabetes types into overarching diabetes stats. This makes it difficult to define some diabetes statistics by type.
Prevalence of Type 1 Diabetes
With that said, we do know a lot about type 1 diabetes. For example, it doesn't just happen in the U.S., but occurs in children and adults around the world. In fact, the global prevalence is about 5.9 people per 10,000, and the incidence is 15 per 100,000, according to the March 2020 Health Promotion Perspectives article. That same article reported:
Global Prevalence (per 10,000 People):
- Asia: 9.6
- Africa: 5.3
- Europe: 2.12
- America: 3.9
Global Incidence (per 100,000 People):
- Asia: 15
- Africa: 8
- America: 20
- Europe: Not reported
Here are the top 10 countries in which children and adolescents (ages 20 and younger) were diagnosed with type 1 diabetes in 2017 (the most current data available), in order of number of reported cases, according to the IDF's 2017 Diabetes Atlas:
- U.S.: 169,900
- India: 128,500
- Brazil: 88,300
- China: 47,000
- Russian Federation: 43,100
- Algeria: 42,500
- U.K.: 40,300
- Saudi Arabia: 35,000
- Morocco: 31,800
- Germany: 28,600
U.S. Prevalence in Young People
About 1.6 million Americans have type 1 diabetes, according to the American Diabetes Association (ADA).
Here is the number of people ages 19 and younger who have type 1 diabetes in each state, along with the prevalence rate, to put that number into better context. States are ranked in order of prevalence. Stats are from 2001 through 2016 (the most recent data available), compiled by the CDC:
- Vermont: 640 (79.6 per 10,000)
- Hawaii: 890 (41.5 per 10,000)
- Maine: 730 (40 per 10,000)
- Alaska: 290 (27.5 per 10,000)
- Montana: 410 (26.8 per 10,000)
- South Dakota: 330 (22.5 per 10,000)
- Wyoming: 220 (20.7 per 10,000)
- New Hampshire: 410 (18.6 per 10,000)
- West Virginia: 420 (18.2 per 10,000)
- Pennsylvania: 3,540 (17.8 per 10,000)
- Alabama: 1,110 (16.4 per 10,000)
- Michigan: 2,450 (15.7 per 10,000)
- North Dakota: 220 (15.3 per 10,000)
- Indiana: 1,640 (14.9 per 10,000)
- Mississippi: 520 (14.9 per 10,000)
- Massachusetts: 1,630 (14.8 per 10,000)
- South Carolina: 970 (14.7 per 10,000)
- Kentucky: 930 (14.7 per 10,000)
- Idaho: 430 (14.6 per 10,000)
- Nevada: 640 (14.6 per 10,000)
- Iowa: 780 (13.8 per 10,000)
- Connecticut: 790 (13.6 per 10,000)
- Tennessee: 1,250 (13.3 per 10,000)
- Utah: 1,010 (13.2 per 10,000)
- Arkansas: 460 (12.7 per 10,000)
- Kansas: 660 (12.5 per 10,000)
- Delaware: 180 (12.4 per 10,000)
- Rhode Island: 190 (12.2 per 10,000)
- Ohio: 2,230 (11.9 per 10,000)
- New Jersey: 1,770 (11.8 per 10,000)
- Illinois: 2,360 (11.7 per 10,000)
- North Carolina: 1,570 (11.7 per 10,000)
- New York: 3,230 (11.3 per 10,000)
- Wisconsin: 1,130 (11.3 per 10,000)
- Washington: 1,220 (11.2 per 10,000)
- Colorado: 960 (11.1 per 10,000)
- Nebraska: 390 (10.7 per 10,000)
- Missouri: 1,060 (10.7 per 10,000)
- Arizona: 1,080 (10.6 per 10,000)
- New Mexico: 250 (10.5 per 10,000)
- Oklahoma: 580 (10.3 per 10,000)
- Virginia: 1,370 (10 per 10,000)
- Florida: 2,250 (9.8 per 10,000)
- Oregon: 550 (9.7 per 10,000)
- Minnesota: 990 (9.7 per 10,000)
- Georgia: 1,390 (9.5 per 10,000)
- Louisiana: 590 (9.4 per 10,000)
- Texas: 3,480 (8.5 per 10,000)
- Maryland: 810 (8.4 per 10,000)
- District of Columbia: < 100 (6 per 10,000)
- California: 3,030 (5.4 per 10,000)
Type 1 Diabetes and Age
As we've mentioned, age plays a big role in the reporting and information available on type 1 diabetes. Let's look at some age-related stats.
Ages 20 and Younger
Type 1 diabetes is one of the most common chronic diseases in childhood, according to the IDF's 2019 Diabetes Atlas.
- Worldwide, 1.1 million children and adolescents have type 1 diabetes, according to the IDF's 2019 Diabetes Atlas.
- About 187,000 children and adolescents have type 1 diabetes in the U.S., according to the ADA.
- 98% of all cases of diabetes in children ages 10 and younger are type 1, according to Diabetes in America.
- 87% of all cases of diabetes in youth ages 10 to 19 are type 1, according to Diabetes in America.
- About 18,000 new cases of type 1 diabetes occur in this age group in the U.S. each year, according to Diabetes in America.
Ages 20 and Older
As we've discussed, stats on adults older than 20 with type 1 diabetes are harder to come by, but we do have some numbers:
- 1.4 million adults ages 20 or older (or 5.2% of all U.S. adults with diabetes) have type 1 diabetes and use insulin, according to the CDC's National Diabetes Statistics Report 2020.
- An estimated 16,000 new cases of type 1 diabetes occur every year in the 20- to 44-year-old age group in the U.S., according to Diabetes in America.
- The National Health and Nutrition Examination Surveys from 1999–2010 reported that the estimated overall prevalence of type 1 diabetes (defined as using insulin since diagnosis, current insulin use and age of onset below 30 or 40 years) was 2.6 per 1,000 and 3.4 per 1,000, respectively, or 740,000 to 970,000 people, according to Diabetes in America.
Other Type 1 Diabetes Demographics
Learning more about type 1 diabetes can be helpful in raising all-important awareness around its successful diagnosis — because as we'll learn, a delayed diagnosis can result in real problems.
Here's what we know about biological sex and type 1 diabetes.
- For those diagnosed before age 15, there's been no significant sex differences found in incidence between people assigned male at birth (AMAB) and people assigned female at birth (AFAB), according to the World Health Organization (WHO).
- After age 25, the incidence of diagnosis is approximately 1.5. higher in people AMAB than people AFAB, the WHO reports.
- People AFAB with type 1 diabetes have about 40% greater excess risk of all-cause mortality, and twice the excess risk of fatal and nonfatal vascular events compared to people AMAB with type 1 diabetes, according to a March 2015 article in The Lancet Diabetes & Endocrinology.
Results from the SEARCH for Diabetes in Youth Study, reported by the CDC in 2020, show that between 2002 and 2015 (the most current results available), type 1 diabetes incidence increased in all age, sex and race/ethnicity groups except: Children younger than 5 and one southwestern tribe of American Indians.
Here's how much the incidence of type 1 diabetes increased per year in the following race/ethnicity groups:
- Asian/Pacific Islander: 4.4%
- Hispanic: 4%
- Non-Hispanic Black: 2.7%
- Non-Hispanic white: 0.7%
Type 1 Diabetes Diagnosis
Diagnosis of type 1 diabetes can be missed, delayed or misdiagnosed because initial symptoms may be unspecific, according to a July 2019 paper in the ADA's Clinical Diabetes. Let's look at one possible reason why:
DKA and Type 1 Diabetes
Researchers in the paper above described how diabetic ketoacidosis (DKA), a life-threatening complication of type 1 diabetes, is present in 30 percent of young people with new onset-type 1 diabetes, according to the SEARCH for Diabetes in Youth Study. In addition, according to the Clinical Diabetes paper:
- DKA occurs more commonly when patients with type 1 diabetes are misdiagnosed (they don't receive treatment soon enough to prevent the complication).
- In the article's retrospective online survey, 25% of participants were misdiagnosed with another condition before receiving their type 1 diabetes diagnosis.
- That misdiagnosis/delay in the correct diagnosis was associated with an 18% increased risk for DKA compared to those correctly diagnosed.
- Misdiagnosis was correlated with increased rates of DKA.
- DKA is the leading cause of death in children with type 1 diabetes, and is associated with worse long-term outcomes.
- The rates of missed diagnosis rose when people got older (the exception being the 7–17 age group).
- About a quarter of first diagnoses of type 1 diabetes in the U.K. happen in the presence of DKA, with similar results in the U.S., France and Poland, according to IDF's 2019 Diabetes Atlas.
Increase in Type 1 Diabetes
The number of type 1 diabetes cases is increasing worldwide, with estimates of children and adolescents under 20 with type 1 growing to over 1 million cases, according to IDF's 2017 Diabetes Atlas. Here's more info from several sources:
- The overall annual increase in type 1 diabetes is estimated to be around 3%, according to IDF's 2017 Diabetes Atlas.
- While the incidence is increasing worldwide, there's variations by country and region, with some locations having far higher incidences than others. This could be due to genetic and environmental factors that we don't yet fully understand.
- 5 million people in the U.S. are expected to have type 1 diabetes by 2050, according to JDRF (formally known as The Juvenile Diabetes Research Foundation).
- Nearly 600,000 youth/children in the U.S. are expected to have type 1 diabetes by 2050, according to JDRF.
- There's no effective intervention to prevent type 1 diabetes (unlike with type 2 diabetes) so reducing the rising case load isn't yet feasible, the IDF's 2017 Diabetes Atlas reports.
Type 1 Diabetes Mortality and Complications Stats
The financial cost of type 1 diabetes is high: $16 billion in annual associated health care expenditures and lost income, according to JDRF. And it has other high costs, too, like in life expectancy, mortality, comorbidities and complications. Here are those stats:
Having type 1 diabetes appears to lower your life expectancy. Here's a closer look:
- Data from various studies has suggested an 8- to 13-year shorter life expectancy for people with type 1 diabetes than people who don't have type 1 diabetes, according to a July 2019 paper in the The Lancet.
- In one specific study, the average person with type 1 diabetes at about age 43 had a life expectancy nearly 8 years shorter than someone the same age without this diabetes type, according to a December 2020 paper in Cardiovascular Endocrinology and Metabolism.
Here's the rundown on mortality stats in type 1 diabetes from Diabetes in America.
- Mortality rates in people with type 1 diabetes are 3 to 18 times higher than those without type 1 diabetes. Diabetes-related acute and chronic complications appear responsible for the excess premature mortality in type 1 diabetes cases.
- End-stage renal disease has accounted for more than half of deaths in the mid-years of diabetes duration (up to 35 years). After 35 years duration, cardiovascular disease represents the cause of death in two-thirds of patients.
- African Americans are at increased risk of premature mortality compared to white people, and in the last 30 years have consistently had mortality rates 2.5 times higher than white people.
- Onset of type 1 diabetes seems to matter, too, with onset after puberty associated with 1.5- to 2-fold higher mortality than prepubertal onset.
Chronic comorbidities associated with type 1 diabetes are numerous. According to an August 2015 paper in Archives of Disease in Childhood, six chronic diseases were significantly higher in children with type 1 diabetes in the early years of developing the disease compared to children without the disease. They were, in order of prevalence:
- Thyroid disease
- Non-infectious enteritis and colitis
- Cardiovascular disorders
- Mental disorders
- Obstructive pulmonary disease
Complications are a serious issue with type 1 diabetes and can include microvascular (retinopathy, neuropathy and nephropathy) or macrovascular (cardiovascular disease, cerebrovascular accidents and peripheral vascular disease) issues, according to The Lancet paper.
- Reducing HbA1c (especially early in the disease course), is associated with about 70% reduction in incidence and slower progression of microvascular disease, according to the study, but for macrovascular/cardiovascular complications, intensive blood sugar control does not seem to cause any such reduction.
- Hyperglycemia is the primary risk factor for microvascular disease, the study reports.
- Centers for Disease Control and Prevention: “National Diabetes Statistics Report 2020”
- Centers for Disease Control and Prevention: “What Is Type 1 Diabetes?”
- Health Promotion Perspectives: “Prevalence and incidence of type 1 diabetes in the world: a systematic review and meta-analysis.”
- Centers for Disease Control and Prevention: "Just Diagnosed With Type 1 Diabetes"
- International Diabetes Federation: “IDF Diabetes Atlas, 9th edn.”
- National Institute of Diabetes and Digestive and Kidney Diseases: “Diabetes in America. 3rd edition.”
- Diabetes Care: "Prevalence of Diabetes in U.S. Youth in 2009: The SEARCH for Diabetes in Youth Study."
- International Diabetes Federation: “IDF Diabetes Atlas, 8th edn.”
- American Diabetes Association: “Statistics About Diabetes”
- Centers for Disease Control and Prevention: “Prevalence of Type 1 Diabetes Among People Aged 19 and Younger in the United States”
- World Health Organization: “Genetics and Diabetes”
- The Lancet Diabetes & Endocrinology: “Risk of all-cause mortality and vascular events in women versus men with type 1 diabetes: a systematic review and meta-analysis.”
- Centers for Disease Control and Prevention: “Rates of New Diagnosed Cases of Type 1 and Type 2 Diabetes Continue to Rise Among Children, Teens”
- Clinical Diabetes: “Misdiagnosis and Diabetic Ketoacidosis at Diagnosis of Type 1 Diabetes: Patient and Caregiver Perspectives.”
- JDRF: “Type 1 Diabetes Facts”
- Lancet: “Type 1 diabetes.”
- Cardiovascular Endocrinology and Metabolism: “Estimating life years lost to diabetes: outcomes from analysis of National Diabetes Audit and Office of National Statistics data”
- Archives of Disease in Childhood: “Chronic comorbidities in children with type 1 diabetes: a population-based cohort study.”
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