Issue: July 2017 - Improving access to diabetes care
Section: Health delivery
Indonesia snapshot: access to diabetes care in Bali
According to the IDF Diabetes Atlas (2015), approximately 10 million adult Indonesians (20 to 79 years old) live with diabetes and as many as 6 million adults live with undiagnosed diabetes, making Indonesia’s diabetes population the seventh largest in the world. With a country population recorded currently at 263 million, and a prevalence of diabetes estimated at 6-7%, the number of Indonesians with type 2 diabetes will likely increase by half if not double by 2040. The Diabetes Atlas does not have data to report on the number of cases of type 1 diabetes in Indonesia.
Bali, a popular island and province of Indonesia, is almost solely dependent upon tourism for its economy but behind the palm trees and coastal glamour, a large proportion of more than 4.2 million people live on $146 US dollars per week minimum wage. That’s about $20 a day.
Dr. Ketut Suastika, Professor of Medicine specializing in endocrinology, and Rector of Udayana University in Denpasar, Bali knows more about diabetes than perhaps anyone else in the province. He offers me access to his diabetes team of medical professionals at Sanglah Hospital, the largest government owned hospital in Bali.
Dr. Suastika spends a good deal of his time administrating, teaching resident internists and fellows about clinical diabetes care and overseeing the most difficult cases. His leadership work with the Indonesian Ministry of Health helped push forward government initiatives which provide medicines for free to people with diabetes, including analog insulins. Indonesia considers Bali one of the most successful models of care for people with diabetes out of all the country provinces, according to Dr. Suastika.
At Sanglah Hospital, physicians and other healthcare professionals explain how the public and therefore, patients are often unaware of diabetes symptoms, resulting in late diagnosis. The status of the amputation clinic at Sanglah is full which likely reflects this problem and neuropathy is often the initial cause of the need to seek medical care leading to diabetes diagnosis. Eye disease is a close second.
While the facts are troubling, there are also signs of encouragement. Professional and patient education is evident and exciting: over one hour in the hospital diabetes clinic, I observe bustling resident fellows as they wait in line for diabetes rounds in training and briefly attend a mini-conference for diabetic nephropathy along with more than 30 other attending professionals.
“Professional education is very important, because we need to educate our patients, too.” says Dr. Wulan Dewiyasa. “If someone comes to our hospital for care, then he or she is a serious case that the local public hospital or clinic cannot manage. We diagnose and treat, provide self-management education and send them home but we will only provide one week’s supply of medicine until they are stable.” All people newly diagnosed or not maintaining blood glucose targets are required to return weekly until the diabetes team feels they can manage independently on their own.
It is not known how many children have type 1 diabetes in Bali, but Dr. Made Arimbawa is one of the few paediatric endocrinologists specifically trained on initiating and administering insulin therapy for children, teens and young adults with type 1 diabetes on the island. “It’s really tough to manage children who come from villages far away–some must travel a distance greater than 3-4 hours and we are their only connection to care.” Dr. Arimbawa says. He explains how none of the doctors in the smaller public hospitals or clinics want to take on the rigors of insulin therapy or look after children with type 1 diabetes. “I have taken on a lot of cases over the years and still keep in touch with many of my former patients, but others I just don’t know what happened.” Currently he cares for 30 Balinese children and teens with type 1 diabetes. “The greatest issue is the children are not testing and therefore not getting adequate insulin.” he explains. “It’s a frustrating situation.” In Bali, blood glucose testing equipment is not free; blood glucose test strips cost $.50 US cents and ketone strips are $3 US dollars each. “Families cannot afford these essential supplies, and without them, children don’t meet targets.” Even with abundant insulin, access to more complex education and essential supplies is poor.
Later on, I am fortunate to meet a number of Dr. Arimbawa’s patients who are visiting the clinic for the afternoon. They have each volunteered for a group interview. Faiz (13 years, diagnosed at 9), Rafi (17 years, diagnosed at 13), Rafi’s sister: Desak (14 years, diagnosed at 9) and Triyasa (7 years, diagnosed at 4) are all bright and expressive young people interested for a moment in the fact that I am not only American, but that I also have an insulin pump. No one has ever seen an insulin pump or a continuous glucose monitor, not even the medical professionals at the hospital who convey their acceptance that expensive diabetes technology is not likely to be a reality in the future.
Each of the children take turns in speaking out about their life with diabetes in Bahasa, their native language, and the attending nurses and doctors translate each word very carefully. The children’s mothers add their perspective, too.
“It’s hard not to eat sweets.” says Deshak who loves to cook and wants to be a chef. “I don’t mind injecting, I do it all by myself.”
“She’s very independent.” adds Deshak’s mother, “but I can see she is sad about her condition.”
“The schools here don’t allow the children to test their blood glucose in school.” exclaims Faiz’s mother, “and his teacher at school doesn’t even believe he has diabetes! We try to stay positive.”
Triyasa’s mother speaks out quietly, “Triyasa’s a really good boy but he was diagnosed so young at four years. I worry about his life ahead.”
The two youngest boys, Triyasa and Faiz want to be professional soccer players when they grow up and Rafi, an older teenager already suffering from severe retinopathy, is studying to be a musician. All the parents in the interview room that day are fearful that terrible complications will threaten their children’s futures and it’s hard not to share their worry; their HbA1c’s range from 9 to 13 percent.
Faiz, who has requested I send him a poster of football star, Cristiano Ronaldo, if possible, makes sure he’s able to tell me one more thing before we say goodbye.
“I try to think of diabetes as a friend.” the 13-year-old explains with a smile. “It’s easier to accept my condition that way.”
Elizabeth Snouffer is Editor of Diabetes Voice. She has lived with type 1 diabetes for more than 40 years.