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Prevalence of Type 1 Diabetes Among People Aged 19 and Younger in the United States

Mary A.M. Rogers, PhD, MS1,2; Benjamin S. Rogers, BA3; Tanima Basu, MA, MS2 (View author affiliations)

Suggested citation for this article: Rogers MA, Rogers BS, Basu T. Prevalence of Type 1 Diabetes Among People Aged 19 and Younger in the United States. Prev Chronic Dis 2018;15:180323. DOI: http://dx.doi.org/10.5888/pcd15.180323.

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Prevalence rate per 10,000 person-years of type 1 diabetes among people aged 19 or younger with private health insurance, by state, 2001–2016. Rates were mapped by quantiles (frequency distribution with equal groups). Rates were highest in Vermont, Hawaii, Maine, Alaska, and Montana. The lowest rates were in California, the District of Columbia, Maryland, Texas, and Louisiana. Data source: Clinformatics Data Mart Database (OptumInsight), Eden Prairie, Minnesota.

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Figure. Prevalence rate per 10,000 person-years of type 1 diabetes among people aged 19 or younger with private health insurance, by state, 2001–2016. Rates were mapped by quantiles (frequency distribution with equal groups). Rates were highest in Vermont, Hawaii, Maine, Alaska, and Montana. The lowest rates were in California, the District of Columbia, Maryland, Texas, and Louisiana. Data source: Clinformatics Data Mart Database (OptumInsight), Eden Prairie, Minnesota. [A tabular version of this figure is also available.]

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Background

Large national surveys that use telephone or in-person interviews have been the source of population-based estimates of diabetes prevalence (1,2). Such surveys in the United States usually do not distinguish between types of diabetes; therefore, maps of type 1 diabetes have been difficult to generate. The advent of large, nationwide databases from health insurers has enabled researchers to investigate geographic variations in disease among the privately insured population. By using such a database, we designed an epidemiologic study to examine the prevalence of type 1 diabetes among people aged 19 or younger across all 50 states and Washington, DC.

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Data Sources and Map Logistics

We used data from January 1, 2001, through June 30, 2016, from the Clinformatics Data Mart Database (OptumInsight). This nationwide database contains integrated longitudinal health information on 73 million Americans with private health insurance, including demographic data, membership information, prescription medications, and outpatient and inpatient services.

We determined eligibility criteria for type 1 diabetes by using a validated procedure (3). First, data on people with a ratio of 0.6 or more type 1 diabetes diagnoses to type 2 diagnoses were extracted from inpatient and outpatient files. This algorithm had a positive predictive value of 98.7% for detecting type 1 diabetes (3). Second, people without any type 2 diabetes diagnosis and with only type 1 diagnoses were extracted; this algorithm had a positive predictive value of 99.3% for ascertaining type 1 diabetes (3).

We had no sex or racial/ethnic restrictions. We included only people aged 19 or younger at the time of enrollment in a health insurance plan. Rates were calculated as the total number of diagnoses of type 1 diabetes in a state from 2001 through 2016 (numerator) divided by the person-years of the underlying insured members in each state during the same period (denominator). Prevalence rates were expressed as cases (both existing and incident) per 10,000 person-years. Because this database constitutes a sample of people with private health insurance in each of the 50 states and the District of Columbia, we estimated the number of people aged 19 or younger with type 1 diabetes in the reference population (privately insured) for each state in 2015 by using the state-specific prevalence rates and the number of people aged 19 or younger with private health insurance in each state (4). Analyses were conducted by using Stata/MP version 15.1 (StataCorp LLC) and mapped by using QGIS Geographic Information System, version 2.18 (QGIS.org).

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Highlights

In our nationwide sample of people covered by private health insurance from 2001 through 2016, we identified 45,047 people aged 19 or younger who had type 1 diabetes. Vermont had the highest prevalence rate of type 1 diabetes (79.6/10,000 person-years) followed by Hawaii, Maine, Alaska, Montana, South Dakota, Wyoming, and New Hampshire (Table). The lowest prevalence rates of type 1 diabetes among people aged 19 or younger were in California, the District of Columbia, Maryland, Texas, and Louisiana. We found a 14.7-fold difference in prevalence rates across all 50 states (79.6/5.4). States with large populations had the greatest number of privately insured young people with type 1 diabetes, with Pennsylvania, Texas, New York, California, Michigan, Illinois, Florida, and Ohio ranking the highest (Table).

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Action

Public health efforts to prevent disease and develop interventions often begin with an assessment of where the disease occurs. We conducted a large, nationwide assessment of the prevalence of type 1 diabetes among young people with private health insurance in the United States. We found considerable variation in the prevalence rate of type 1 diabetes across the 50 states, with a nearly 15-fold difference from the highest to lowest prevalence rates. Previously, data from the National Health and Nutrition Examination Survey were used to estimate the prevalence of type 1 diabetes, but with a sample of 123 people with the disorder aged younger than 30, precise state-specific rates could not be calculated (5). In the SEARCH for Diabetes in Youth study, data were collected from locations in only 5 states and from selected Native American sites, not for all 50 states (6). Although our study does include all 50 states, it is important to note that these data represent only children and adolescents with private health insurance. Additional data are needed to assess geographic variation among young people with public health insurance.

Our results suggest that geographic variation in the prevalence rate of type 1 diabetes among young people is different from that of type 2 diabetes (2). Although genetic predisposition plays a role in both types, precipitating factors vary, with autoimmune-related factors being closely associated with type 1 diabetes and lifestyle factors associated with type 2 diabetes (2). The availability of health services, however, is critical for people with either type to prevent long-term complications.

The Patient Protection and Affordable Care Act included provisions to enable people with pre-existing conditions to secure health insurance, which has important implications for those with diabetes (7). The most frequent barriers to health care among young people with type 1 diabetes are cost, communication problems, and obtaining needed information (8). Insurance alone does not eliminate all such barriers but should curtail some, such as cost, although interruptions in insurance remain a concern (9). The frequency of such interruptions varies by state and is associated with 5-fold increases in emergency department visits and hospitalizations (9).

The variation in state-specific prevalence rates of type 1 diabetes is mirrored by state-level variability in services. Not all states mandate that insurers cover diabetes treatment and supplies (10). Alabama, Idaho, North Dakota, and Ohio do not have such mandates. Missouri also does not have a mandate across all insurance policies but requires that insurers offer at least one policy that covers treatment of diabetes (10). Laws relevant to emergency access to insulin also differ; 10 states now allow pharmacists to dispense insulin with an expired prescription in emergency situations. Therefore, one actionable consequence of our study would be to improve state laws and consider federal legislation so that patients with type 1 diabetes are provided the services necessary for optimal health — regardless of the state in which they live.

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Acknowledgments

This study was funded by the National Institutes of Health (grant no. UL1TR000433) to the Michigan Institute for Clinical and Health Research and by the Jaeb Center for Health Research. The funders had no role in the design of the study; in the collection, analysis, and interpretation of data; or in writing the article. No copyrighted surveys, instruments, or tools were used. The authors have no conflicts of interest.

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Author Information

Correspondence: Mary A. M. Rogers, PhD, Research Associate Professor, Department of Internal Medicine, University of Michigan, Bldg 16, Rm 422W North Campus Research Complex, 2800 Plymouth Rd, Ann Arbor, MI 48109. Telephone: 734-647-8851. Email: maryroge@umich.edu.

Author Affiliations: 1Department of Internal Medicine, University of Michigan, Ann Arbor, Michigan. 2Institute of Healthcare Policy and Innovation, University of Michigan, Ann Arbor, Michigan. 3Department of Geography, Bowling Green State University, Bowling Green, Ohio.

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References

  1. Narayan KM, Boyle JP, Thompson TJ, Sorensen SW, Williamson DF. Lifetime risk for diabetes mellitus in the United States. JAMA 2003;290(14):1884–90. CrossRef PubMed
  2. Centers for Disease Control and Prevention. National diabetes statistics report, 2017. Atlanta (GA): Centers for Disease Control and Prevention, US Department of Health and Human Services; 2017.
  3. Zhong VW, Pfaff ER, Beavers DP, Thomas J, Jaacks LM, Bowlby DA, et al. ; Search for Diabetes in Youth Study Group. Use of administrative and electronic health record data for development of automated algorithms for childhood diabetes case ascertainment and type classification: the SEARCH for Diabetes in Youth Study. Pediatr Diabetes 2014;15(8):573–84. CrossRef PubMed
  4. US Census Bureau. American Community Survey. TABLE HIC-5_ACS. Health insurance coverage status and type of coverage by state. https://www2.census.gov/programs-surveys/demo/tables/health-insurance/time-series/acs/hic05_acs.xls. Accessed July 24, 2018.
  5. Menke A, Orchard TJ, Imperatore G, Bullard KM, Mayer-Davis E, Cowie CC. The prevalence of type 1 diabetes in the United States. Epidemiology 2013;24(5):773–4. CrossRef PubMed
  6. Dabelea D, Mayer-Davis EJ, Saydah S, Imperatore G, Linder B, Divers J, et al. ; SEARCH for Diabetes in Youth Study. Prevalence of type 1 and type 2 diabetes among children and adolescents from 2001 to 2009. JAMA 2014;311(17):1778–86. CrossRef PubMed
  7. Obama B. United States health care reform: progress to date and next steps. JAMA 2016;316(5):525–32. CrossRef PubMed
  8. Valenzuela JM, Seid M, Waitzfelder B, Anderson AM, Beavers DP, Dabelea DM, et al. ; SEARCH for Diabetes in Youth Study Group. Prevalence of and disparities in barriers to care experienced by youth with type 1 diabetes. J Pediatr 2014;164(6):1369–75.e1. CrossRef PubMed
  9. Rogers MAM, Lee JM, Tipirneni R, Banerjee T, Kim C. Interruptions in private health insurance and outcomes in adults with type 1 diabetes: a longitudinal study. Health Aff (Millwood) 2018;37(7):1024–32. CrossRef PubMed
  10. National Conference of State Legislatures. Diabetes health coverage: state laws and programs. http://www.ncsl.org/research/health/diabetes-health-coverage-state-laws-and-programs.aspx. Accessed July 24, 2018.

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Table

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Table. Prevalence Rate and Number of People Aged 19 or Younger With Type 1 Diabetes, Ranked by State, United States 2001–2016
Prevalence Rate per 10,000 Person-Years, 2001–2016 Number, 2015a
Rank State Rate (95% Confidence Interval) State Number
1 Vermont 79.6 (43.5–133.6) Pennsylvania 3,540
2 Hawaii 41.5 (15.2–90.3) Texas 3,480
3 Maine 40.0 (29.3–53.4) New York 3,230
4 Alaska 27.5 (18.0–40.3) California 3,030
5 Montana 26.8 (19.5–35.9) Michigan 2,450
6 South Dakota 22.5 (16.7–29.8) Illinois 2,360
7 Wyoming 20.7 (15.5–27.1) Florida 2,250
8 New Hampshire 18.6 (15.4–22.3) Ohio 2,230
9 West Virginia 18.2 (14.9–22.1) New Jersey 1,770
10 Pennsylvania 17.8 (16.5–19.2) Indiana 1,640
11 Alabama 16.4 (14.8–18.0) Massachusetts 1,630
12 Michigan 15.7 (14.6–16.8) North Carolina 1,570
13 North Dakota 15.3 (11.8–19.4) Georgia 1,390
14 Indiana 14.9 (13.9–15.9) Virginia 1,370
15 Mississippi 14.9 (13.2–16.6) Tennessee 1,250
16 Massachusetts 14.8 (13.5–16.1) Washington 1,220
17 South Carolina 14.7 (13.2–16.3) Wisconsin 1,130
18 Kentucky 14.7 (13.5–15.9) Alabama 1,110
19 Idaho 14.6 (12.4–17.1) Arizona 1,080
20 Nevada 14.6 (12.9–16.4) Missouri 1,060
21 Iowa 13.8 (12.5–15.3) Utah 1,010
22 Connecticut 13.6 (12.3–15.0) Minnesota 990
23 Tennessee 13.3 (12.4–14.2) South Caroline 970
24 Utah 13.2 (12.3–14.1) Colorado 960
25 Arkansas 12.7 (11.3–14.2) Kentucky 930
26 Kansas 12.5 (11.4–13.7) Hawaii 890
27 Delaware 12.4 (9.3–16.2) Maryland 810
28 Rhode Island 12.2 (11.1–13.3) Connecticut 790
29 Ohio 11.9 (11.5–12.3) Iowa 780
30 New Jersey 11.8 (11.1–12.5) Maine 730
31 Illinois 11.7 (11.1–12.3) Kansas 660
32 North Carolina 11.7 (11.1–12.2) Vermont 640
33 New York 11.3 (10.6–11.9) Nevada 640
34 Wisconsin 11.3 (10.7–11.8) Louisiana 590
35 Washington 11.2 (10.2–12.2) Oklahoma 580
36 Colorado 11.1 (10.6–11.6) Oregon 550
37 Nebraska 10.7 (9.8–11.7) Mississippi 520
38 Missouri 10.7 (10.2–11.2) Arkansas 460
39 Arizona 10.6 (10.0–11.1) Idaho 430
40 New Mexico 10.5 (9.0–12.2) West Virginia 420
41 Oklahoma 10.3 (9.5–11.2) Montana 410
42 Virginia 10.0 (9.4–10.6) New Hampshire 410
43 Florida 9.8 (9.5–10.1) Nebraska 390
44 Oregon 9.7 (8.6–10.8) South Dakota 330
45 Minnesota 9.7 (9.2–10.1) Alaska 290
46 Georgia 9.5 (9.1–9.9) New Mexico 250
47 Louisiana 9.4 (8.7–10.2) North Dakota 220
48 Texas 8.5 (8.3–8.7) Wyoming 220
49 Maryland 8.4 (7.9–8.9) Rhode Island 190
50 District of Columbia 6.0 (4.4–8.0) Delaware 180
51 California 5.4 (5.2–5.6) District of Columbia <100

a Estimated number of people aged 19 or younger with type 1 diabetes and private health insurance in 2015.

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The opinions expressed by authors contributing to this journal do not necessarily reflect the opinions of the U.S. Department of Health and Human Services, the Public Health Service, the Centers for Disease Control and Prevention, or the authors' affiliated institutions.

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