Research findings

What our research found

A summary of our secondary research into why Indonesian children with Type 1 Diabetes are diagnosed late, misdiagnosed, or unable to access insulin consistently.

66.7%

of children were already in diabetic ketoacidosis when diagnosed

1 in 5

children are correctly diagnosed at their first visit to a physician

pediatric endocrinologists in the entire country, across only 16 provinces (2020)

~20%

of average household income can go to blood glucose test strips alone

The central question

Why are many children in Indonesia diagnosed late, misdiagnosed, untreated, or unable to consistently access insulin for Type 1 Diabetes?

Public awareness of diabetes in children is low, so families do not recognise thirst, frequent urination and sudden weight loss as warning signs. Doctors in primary clinics rarely encounter Type 1 Diabetes and often mistake it for pneumonia, asthma or gastroenteritis. A shortage of specialists and limited testing compound the misdiagnosis. Where insulin is out of reach, it is usually because it is too expensive for the family, or because a remote area lacks reliable healthcare and supply.

Explore the data

Switch between diagnosis delay, access to insulin and BPJS coverage. Hover or tap any bar for the exact figure.

Severity of DKA at diagnosis

66.7% of children were already in diabetic ketoacidosis when diagnosed. Of those, 71.4% were severe.

Diagnosis

Diagnosis usually comes late

Most children are diagnosed between 3 and 10 years old, and symptoms typically persist for more than two weeks before a diagnosis is made.

Only one in five is recognised at first contact

Only about one in five children is correctly diagnosed at their first encounter with a physician. Type 1 Diabetes is commonly mistaken for Type 2 Diabetes, stomach flu or urinary tract infections.

Most present in crisis

66.7% of children presented in diabetic ketoacidosis (DKA); of those, 71.4% were severe, 23.8% moderate and 4.8% mild. National data recorded around 71% presenting with DKA in 2017, up from 63% in 2015–2016, against a 58-country pooled estimate of 41.9%.

Classic symptoms are present — but missed

Polyuria was reported in 93.1% of patients, polydipsia in 92.9% and nocturia in 90.0%. The signs are visible long before anyone tests blood glucose.

Glycemic control is rarely on target

Only 20% of registered patients self-monitor blood glucose at least three times daily, 32.3% do not check HbA1c routinely, and 79.1% of pediatric endocrinologists report most of their patients above 8.5% HbA1c.

Who is being diagnosed

Registered pediatric Type 1 Diabetes cases by age group, as of January 2024.

Sort

< 1 yrs9 · 0.8%

1–5 yrs118 · 10.5%

6–10 yrs254 · 22.6%

11–15 yrs479 · 42.5%

16–18 yrs266 · 23.6%

Peak diagnosis falls between 11 and 15 years, though most children first show symptoms between 3 and 10.

Awareness

Diabetes is still seen as an adult disease

Parents commonly believe diabetes only affects older adults, and that it is caused by eating too much sugar rather than by an autoimmune process. The historical label “juvenile diabetes” adds to the confusion.

Awareness is lowest where risk is highest

Families with lower socioeconomic status are least likely to know that children can develop diabetes. Parents rely mainly on pediatricians and online sources for health information.

Schools are not equipped

Type 1 Diabetes is not usually taught in schools and teachers are not trained to recognise symptoms or respond to hypoglycemia. A 2008–2011 World Diabetes Foundation project trained 381 pediatricians and 61 diabetes educators and reached up to 11 million people through media.

Healthcare access and insulin

51 specialists for the whole country

As of 2020 there were only 51 pediatric endocrinologists across 16 of Indonesia's provinces. Rural districts often have no endocrinologist, diabetes educator or dietitian at all.

Care is centralised on Java

Most specialists and diabetes centres are in major Javanese cities such as Jakarta and Surabaya. The high case counts recorded there likely reflect better reporting rather than higher true prevalence; outer islands show noticeable underreporting.

Distance carries its own cost

Reaching care means high transport costs and days off work or school. Some families buy insulin out of pocket locally rather than travel to a BPJS-authorised facility.

Insulin types and pumps

Basal, bolus and premix insulin are used — Novorapid, Levemir, Lantus, Apidra and Humalog are common. At registration, 48.7% used a conventional regimen, 48.3% intensive and only 0.7% an insulin pump; fewer than 2% of pediatric patients use pumps because they are not insured.

Monthly collection disrupts treatment

BPJS covers insulin on a monthly basis, which requires a clinic visit every month — often during school hours — and can interrupt continuity of supply.

Registered cases by province

Registered pediatric Type 1 Diabetes cases by province (girls and boys), as of January 2024. Higher counts on Java likely reflect better reporting rather than higher true prevalence.

37 / 37 provinces


DKI Jakarta	240	165	405
West Java	140	115	255
East Java	110	95	205
Central Java	125	65	190
South Sumatra	82	48	130
West Sumatra	75	45	120
Lampung	55	35	90
Banten	45	30	75
North Sulawesi	42	20	62
South Kalimantan	25	15	40
North Sumatra	25	12	37
Yogyakarta	22	15	37
Aceh	15	8	23
East Kalimantan	12	8	20
Riau	12	5	17
Central Kalimantan	8	5	13
South Sulawesi	8	5	13
Riau Islands	8	4	12
Bengkulu	5	3	8
West Kalimantan	5	3	8
Central Sulawesi	5	3	8
Bali	5	2	7
Jambi	5	2	7
Bangka Belitung	2	1	3
West Nusa Tenggara	2	1	3
North Kalimantan	2	1	3
Southeast Sulawesi	2	1	3
East Nusa Tenggara	1	1	2
Gorontalo	1	1	2
West Sulawesi	1	1	2
Maluku	1	1	2
North Maluku	1	1	2
Papua	1	1	2
West Papua	1	1	2
South Papua	1	1	2
Central Papua	1	1	2
Papua Highlands	1	1	2

Cost and coverage

What families pay

Test strips: up to Rp 600,000 (~US$38) per month for 4–6 tests a day.
Glucose meters: Rp 300,000–600,000, plus Rp 60,000–120,000 per pack of 25 strips.
Average household income is about Rp 3,178,227 (~US$203) per month (2023).

Covered by BPJS

Monthly basal and prandial insulin
90 needles and alcohol swabs each month
HbA1c testing every three months

Not covered

Blood glucose meters and test strips
Continuous glucose monitors (CGM)
Insulin pumps and supplies
Emergency glucagon kits

Policy and institutions

JKN / BPJS

Indonesia's vehicle for universal health coverage since 2014, covering insulin and quarterly HbA1c testing.

SatuSehat

A Ministry of Health initiative integrating electronic medical records nationally.

CDiC Indonesia & IDAI (IPS)

Maintain the national patient registry, publish management guidelines, run the PrimaKu app with a diabetes diary, and train doctors and nurses. Patient organisations focus mainly on advocacy and peer support.

No dedicated national T1D programme

Type 1 Diabetes has no standalone national programme, though it falls under the non-communicable disease target of SDG 3.4.

School, stigma and inequality

Children hide their condition at school

Many children avoid injecting insulin at school so they are not seen as different. Doctors compensate by raising basal doses, which worsens blood glucose control.

School policy is largely absent

Few schools have policies supporting students with Type 1 Diabetes, and teachers need training in day-to-day management and hypoglycemia response.

Poverty deepens every barrier

Low-income families experience longer delays and are more likely to present in DKA, because low awareness and financial barriers compound one another.

What should change

Extend insurance to monitoring supplies

Covering test strips, meters and glucagon would remove the single largest recurring out-of-pocket cost families face.

Build multidisciplinary teams

High-income countries achieve better outcomes with dietitians, diabetes educators and psychologists alongside physicians, plus insurance coverage for technology.

Test blood glucose early and routinely

A finger-prick test at first presentation of thirst, weight loss and frequent urination is the cheapest intervention available against DKA.

Train teachers and primary clinicians

The people who see children first — teachers, general practitioners and emergency doctors — need to recognise the 4 Ts and act on them.

Sources

Faizi M, et al. (2024/2025). “Pediatric Type 1 Diabetes Care in Indonesia: A Review of Current Challenges and Practice.” Journal of Clinical Research in Pediatric Endocrinology.
Pulungan AB, et al. (2021). “Type 1 diabetes mellitus in children: experience in Indonesia.” Clinical Pediatric Endocrinology.
National registry figures on pediatric Type 1 Diabetes in Indonesia (PMC12699084), as of January 2024.
Additional secondary sources: Indonesian Ministry of Health publications, BPJS policy documents, International Diabetes Federation and WHO reports.