Treating T1D in Bangladesh: Dr. Kaufman + Life for a Child
Editor’s Notes: Please consider Sparing a Rose each Valentine’s Day. This valuable program from Life For a Child will directly help young people with Type 1 diabetes survive.
Francine R. Kaufman, M.D. serves as Chair of the Leadership Council’s Science Advisory Committee. She recently went to Dhaka, Bangladesh with Life for a Child to help treat the local T1D population in need of supplies and education. An edited version of her experiences appears below.
Until 2022, there have been wide gaps in the data about the incidence and impact of type 1 diabetes across the world. According to estimates from the T1D Index by JDRF, almost 25,000 people live with type 1 diabetes in Bangladesh, but more than 38,000 additional people would still be alive today if everyone had access to a timely diagnosis, vital diabetes supplies and management education. An average young person diagnosed at age 10 will lose an estimated 47.2 years of healthy life. Globally, there are an estimated total of 3.86 million people that would be alive today if everyone had equitable access to diabetes healthcare and tools. Learn more at T1DIndex.org.
Greetings from Dhaka
Traveling over the city by air and then languishing in traffic forever to get to the hotel, I see what now seems typical of a developing country: cars, motorbikes, rickshaws, and people at a standstill jammed up in traffic with horns blaring like a discordant symphony; people living on the streets; old buildings with new structures next to them supported by cranes and rebar trying to reach for the sky.
Yesterday, I was at the main diabetes hospital all day seeing patients. I was with Graham Ogle, who runs Life for a Child and continues to deserve sainthood for his global work in bringing care, education, supplies, and life to close to 21,000 children around the world who likely would perish without his efforts. Graham is so humble and focused; he seemingly knows everyone and everything about the care of children with diabetes in Dhaka, as well as everywhere Life for a Child collaborates with local health care providers in over 40 countries.
The diabetes hospital – called BIRDEM – is run by Dr. Bedowra Zabeen, an amazing woman and endocrinologist who is known worldwide for her work throughout Bangladesh. They follow over 7000 children with diabetes (there are 9,000 total in all of Bangladesh); hundreds come in each day for outpatient care or to be admitted. The Life for a Child program follows 3000 children and young adults (up to age 26) and the Novo Nordisk program helps with another 3000 children. This means few can afford to buy insulin and supplies on their own since there is still insufficient support by the government or insurance programs in this country. From Life for a Child, they can only get regular and NPH insulin and 1-2 blood glucose strips per day. This is how I practiced pediatric diabetes 25-35 years ago. There are a few using newer insulins and even a few with insulin pumps, so if there are resources, families can buy better diabetes care than what is offered by these free charity programs.
Work to be done
The patients come through like a torrent. First, a newly-diagnosed child, so emaciated and weak, she could barely stand up. Then 4 children who seemed to be about five-to-six-years old, not adequately treated because they don’t have enough glucose strips, and as a result no chance to appropriately adjust insulin doses. School was a problem for each, either they had to miss a lunch shot or their mother had to come to administer it – most often without first doing a blood test. One was very hyperglycemic because her parents were unable to deny her anything she wanted to eat.
There were also two adorable 17-year-old twin girls, diagnosed within a year of each other, who had just graduated from high school and were waiting to see if they could go on with their education. Despite sleeping late, missing shots, and pretty much de-prioritizing diabetes (the universal story of adolescence and young adulthood), their A1Cs were still good, mainly because they had way too many low glucose levels. There were many more routine cases: children taking only two insulin shots per day, having too few blood tests, not having refrigerators to store their insulin (they use clay pots instead), and feeling stigmatized and ostracized.
Then came the really hard cases: a child with severe insulin resistance (likely a gene defect due to too many consanguineous marriages in this country) taking 200-300 units of insulin per day, a child with dermatomyositis (a severe autoimmune disease of the skin and muscles) taking 500 units or more a day and chemotherapy and suffering the crippling joint effects of this rare disease that is most often complicated by diabetes. The fact that her hands were stiff and crippled made it all so much more amazing that she is an artist.
There were a number of pubertal children and even prepubertal children with Type 2 diabetes – it’s hard to find someone who is not overweight/obese in Dhaka City, and the children appear to be the most affected. Bangladesh has one of the highest rates of diabetes: 8-10% of the population is affected and it is expected to quickly increase to 13% – and this is mainly Type 2. There are higher rates of kidney complications, but the most difficult aspect of having diabetes in Bangladesh is the stigma, the lack of education concerning its cause (children and their mothers are blamed), and the chance that anyone – particularly a child – can succeed with this disease.
Why we’re here
Our Type 1 diabetes workshop in Dhaka was sponsored by Life for a Child, the Bangladesh Diabetes Association, and ISPAD (the International Society for Pediatric and Adolescent Diabetes), and was organized by Dr. Zabeen. Forty-five physicians and nurses, dietitians, and psychologists from 11 cities and areas across Bangladesh attended our lectures and presentations. Some of the participants flew to Dhaka from the north, took trains for hours, and then battled the Dhaka City traffic to get to the Dhaka Club. It was a parade of brightly colored, sparkling saris since most of the attendees were women; many of the men had red hair and beards from henna staining.
Our lectures were intermixed with lectures delivered by Dr. Zabeen, Dr. Azad (who started the field of pediatrics in Bangladesh), and a few other physicians who related the Bangladesh experience in childhood diabetes, pregnancy and diabetes, Ramadan and diabetes, and nutrition and diabetes. They discussed the struggles of managing this difficult disease in an area of our world with unimaginable poverty, very limited access to lab testing, supplies and medications (all with no way to pay for them short of a charity program, like Life for a Child), and in a culture deeply rooted in both prejudice and misunderstanding about diabetes. Schools make no concessions for the children at all, blame is placed on mothers and the children themselves, and they are often denied basic opportunities.
A young, 26-year-old woman who was diagnosed with T1D at 7 years of age came to speak to the seminar attendees. As a result of having diabetes, she was devalued so her father married her off at age 14. As usual in the villages, she went to live with her husband’s family. Since she arrived 12 years ago, her mother-in-law has not allowed her have food unless her husband is home – and he works all day. So she fasts all day long, gets frequent and severe hypoglycemia, and often takes no insulin at all. Somehow in the midst of this all, she had a baby 5 years ago, and this little 5-year-old girl was skipping and running around, and adorable.
After our lectures each day, we took selfies with the attendees, and we even danced after my lecture on physical activity. The sway of the saris was mesmerizing and the joy and laughter totally infectious. Amidst it all, their questions and comments revealed how committed they all are to advance diabetes care for children in Bangladesh despite all of the obstacles. It was a struggle to go to the airport, but I somehow sat in the backseat and resigned myself to the stop and go traffic, the veering of cars from one lane to the other, and the constant cacophony of horns. It seemed to fit with my simultaneous feelings of despair and hope – with a great belief in Dr. Zabeen and her teams of amazing health care providers and her patients willing to share their stories.