After my 2-year-old son was diagnosed with type 1 diabetes in early 2009, months passed before the fog of fear and uncertainty began to lift. His pancreas wasn’t ever going to produce insulin again, and he’d always, throughout his life, be dependent on insulin injected into his skin. Without the insulin, he would sicken and die.
By fall 2009, however, I was able to think outside of my own family and our struggle, and I wondered: What did pediatric diabetes management look like in the developing world?
I had worked for years in international human rights and development, and had often traveled to countries where the medical system struggled. It was hard for me to even begin to think about what type 1 diabetes management might look like in resource-poor countries.
The night my two year old son had a severe hypoglycemic episode, we used our glucometer, test strips, glucagon injection and cellphone to diagnose, treat and call for help. Paramedics swarmed the house, and our endocrinologist’s soothing voice talked us down. I went back to sleep that night feeling relieved and grateful for the tools and care we had. But, how, I wondered, did parents deal with similar incidents in poor countries? Were insulin, needles, test strips and glucagon readily available? What about middle-of-the night expert advice?
To my surprise, however, neither organization had any idea. “We don’t do that kind of thing,” they said, and from their tone, I suspected I was one of the first in recent memory to have asked.
Confused, I called the American Diabetes Association and the U.S.-based JDRF; surely, I thought, someone in the U.S. diabetes community would have some kind of program. Again, I drew a blank.
After a few hours on the web, however, I discovered a handful of groups devoted to type 1 diabetes in the developing world. I found a particularly impressive website run by the Australia-based Life for a Child (LFAC), an affiliate of the Brussels-based International Diabetes Federation.
Acting on impulse, I sent its director, Dr. Graham Ogle, a spontaneous, nighttime email, one I thought I might regret. “I’d like to donate money,” I wrote, “but would also like to help out in other ways. What can I do?”
The ever-courteous Dr. Ogle wrote back a few days later; ever since, my life has changed for the better.
Dr. Ogle suggested that I visit a few LFAC-supported clinics to monitor outcomes, assess needs, and provide encouragement to local partners. The group sends donations of insulin, supplies and money worldwide, but Dr. Ogle can’t visit all of their partners as frequently as they might like.
My first LFAC volunteer trip was in 2010 to Nagpur, located in the exact center of India. I traveled with two endocrinologists from my son’s first clinic at the Children’s Hospital of Eastern Ontario, Drs. Alexandra Ahmet and Caroline Zuijdwijk.
We met dozens of children cared for by Dr. Sharad Pendsey, a private doctor who created the Dream Trust, an Indian medical charity, over 25years ago. He has tended to their diabetes as well as he can, handing out free insulin and syringes to some 500 kids and youth every three months.
Electricity and refrigerators are in short supply, so patients use small clay pots for insulin storage. To keep them cool, families bury the pots in the ground, or cover them in water. India’s summertime heat is searing, but somehow, the clay pots seem to work.
Dr. Pendsey and his staff track the patients as best they can, and offer a bit of money to help the poorest kids attend school. There are no funds for blood glucose meters or strips, however, so Dr. Pendsey guesstimates insulin doses by age and weight. Preliminary results from a baseline study led by Drs. Zuijdwijk, Ahmet and Pendsey suggest that average A1Cs are very high.
LFAC supports several hundred of the Dream Trust’s patients, and is always trying to do more. Still, there is scant access to blood testing equipment, it’s not clear that Dr. Pendsey or anyone else can make accurate insulin adjustments based only on height and weight. In any case, most patients can’t call the clinic, and only make it in to Dr. Pendsey’s office once every three months. Under these conditions, it’s unclear how much their blood sugar levels can improve. Once they are in the early 20s, moreover, they will have to find insulin on their own, as Dr. Pendsey, and LFAC, can’t afford to treat them for their entire lives.
There is no question that Dr. Pendsey has saved the lives of hundreds of children. Will they grow up and lead healthy lives, however, or will they die an early death after suffering from a whole host of diabetes-related diseases?
LFAC is now supporting more than 20,000 children and youth with type 1 diabetes worldwide, and its resources are stretched paper-thin. Dr. Pendsey and other LFAC partners do the best they can, leveraging other donations and using their own money.
When I returned to Canada, my friends and I began raising money for Dr. Pendsey’s patients. In central India, $350 pays for a year’s worth of insulin and syringes, and our small group of type 1 diabetes parents, doctors and hospital staff have managed to send about $5,000 each year to Dr. Pendsey’s trust.
Since I first connected with Dr. Ogle, I’ve volunteered for Life for a Child (LFAC) elsewhere in India, Mexico, Morocco, Tajikistan, and Uzbekistan. Each trip to a Life for a Child partner clinic has made me love the organization and its work even more.
Working with LFAC has made a world of difference to me. When my son was diagnosed, I was depressed and scared. I realized that our lives had changed irrevocably; no matter what happened I would always be deeply anxious about Sacha’s health, every waking hour, for the rest of my life.
Today, however, I realize just how fortunate we really are. My son has unlimited access to insulin, an insulin pump, a continuous glucose monitor, and the best medical guidance, 24/7. Yes, this is all expensive and at times dispiriting, but after working for Life for a Child, I realize it is also a great privilege.
You can listen to a radio documentary about the Dream Trust, prepared by Lucy Laycock, a British radio journalist. This article first appeared in the MinnPost.