Riya Nearly Died from DKA because her Family Couldn’t Afford Insulin
Editor’s Note: Though this story takes place in India, access to insulin remains a global issue. People who take insulin require consistently affordable and predictable sources of insulin at all times. If you or a loved one are struggling to afford or access insulin in the United States, click here.
It was cold December days in the hospital with the usual hustle and bustle, calls with fellow colleagues and the to-do hospital work. In came the early morning rush of reporting pathology slides in my department. My Freestyle Libre graphs showed a steep fall, indicating my blood sugar was crashing low. I needed to chew those glucose tablets and move on. That’s how it is as a T1D Doctor, struggling to be normal amongst the hospital crowd. There are sick people all around, some in immense pain and some living with a chronic illness that doesn’t show on the outside and there you are one with a white coat but a broken pancreas. You got to act strong in this kind of environment. The hospital teaches you a lot under one roof — there’s hope, there’s pain, there’s a feeling of fulfillment and there’s also a feeling of failure when you can’t use a magic wand for a medical diagnosis.
Some of my good friends know I love meeting patients with Type 1 diabetes so they always call me to meet them and offer some support. They know I will come rushing; it gives me a sense of fulfillment. It’s something I can give back to the diabetes world, which for me came 11 years ago just like a mountain crumbling and trapping me and my family under a rubble of emotions and financial pressure. We all have had our own stories of getting diagnosed but every story has a beautiful emotion attached to it. It’s a true definition of strength and how we grow out of it making it part of the Type 1 diabetes journey.
So back to that winter morning in the hospital … I got a call from my colleague in the Department of Pediatrics that a 9-year-old girl was admitted in an unconscious state with HbA1c of 11%. She’d been previously diagnosed at some hospital as a case of Type 1 diabetes and the parents couldn’t afford treatment so they missed on some insulin shots and here she was in an unconscious state. CT scan revealed cerebral edema with herniation of the spinal cord, which in simple terms meant due to prolonged hyperglycemia the brain swelled up putting pressure onto the spinal cord structures.
A 9-year-old girl, a case of T1D, just because of lack of awareness, because of a lack of access to insulin.
I rushed to meet the parents and to know more about the case. For some it was just a case, but for me, it meant I could have been the one right there. I could imagine what the family must be going through. The mother felt helpless — she had no idea what went wrong. She was trying to follow what was prescribed by the doctors, but they didn’t have money to buy Lantus so they missed few doses. All she kept saying, will she survive? The father stood there with the file and all her previous records of blood sugar charting. They tried to do their best what was advised to them by doctors. He worked day-night so he could take care of the family and three more kids, one of which had Type 1 diabetes. And I could sense what they were going through, perhaps asking themselves, “Where did we go wrong?”
As a doctor, I was afraid thinking about the prognosis, but I placed my hand on her shoulder and said, “It’s going to be okay. I have it too.” I showed her my insulin pump.
Through her tears, I could see some hope as she sat beside her daughter who lay lifeless.
I am not a pediatrician and neither was I her treating doctor but I knew as a person living with Type 1 diabetes how important it would be for the parents to have a positive approach to this hard phase, so I smiled and reassured them that I will keep a close check on her with my friends who were doing residency in pediatrics. I assured her that I will try to support her once the girl is out of danger.
Two months brought along hope and sorrow amalgamated in the little girl’s life. She was conscious but lost 60-70% of her motor ability with her right hand clawed and 90% of her right eye underwent optic atrophy. She left school and the mother home cared for her. I got HbA1c from the Pathology department I work in and closely monitored her diet and insulin dosings and helped her get the physiotherapy sessions in the hospital.
One of our member from the organisation “Diabetes India Youth in Action” (which is a T1D led patient advocacy support group in New Delhi) donated his lantus supply so the little girl could use it. I supplied her with blood sugar strips so the mother could closely monitor her blood sugars. I felt so happy when every time she came she said, “Apoorva Di can we click a selfie? and then she said, “I look so much better than last time.”
All I had was empathy, a feeling of connection, a bond only a person with Type 1 diabetes could feel. I smiled back and said, “Next time, I want a better A1C.” Like a gift, she said, “Yeah!”
Eight months have passed and every time she comes to the hospital, she finds me. There is always the enthusiasm for something good ahead. She is looking forward to going back to school and says, “I want to paint and write again.”
This story is about one person, but the she is one of many who are fighting against this monster of a disease. Many are still unaware about the disease and its complications and many more do not know about the right insulin dosing and what missing a dose can mean for someone’s life.
In the near century, advances in diabetes care have been dramatic with recombinant human insulin, testing methods, HbA1C, self-glucose monitoring, disposable syringes, glucagon, insulin pumps, continuous glucose monitoring and much more. Yet, for those with Type 1 diabetes in developing countries, these modern developments not only are unavailable but also in many instances, even their existence remains unknown. Life with diabetes has not advanced much beyond the discovery of insulin in the mid-1920s, as access and affordability to insulin still remains a hope. The IDF estimates that between 80,000 and 100,000 children, representing around 50 countries, do not have consistent access to this life-saving medication.
A lot needs to be done and we can just be the little drops with our little efforts in this big ocean of people living with Type 1 diabetes.
For me that defines advocacy.
“Be the change you wish to see in the world” – Gandhi
Apoorva is a member of Beyond Type 1’s Leadership Council.