Dispatches from the Front Lines of the Global Diabetes Epidemic

Dr. Hawkins has been working with doctors at Mulago Hospital, the largest medical facility in the Ugandan capital of Kampala, to develop training programs for health professionals throughout the country on diabetes prevention and care. On this trip, she, Dr. Walker and colleagues offered an endocrinology training program for medical specialists from Kampala and the surrounding area.

From Kampala, Dr. Walker traveled to a diabetes clinic in Mityana, where the staff is working to develop educational posters and materials for their patients.

Dr. Hawkins visited Ongutoi, a village in northern Uganda, for the opening of a small hospital and to check up on Isaac, a teenage diabetic orphan who she is sponsoring to go to school, before heading to Egypt for a Global Diabetes Alliance meeting.  In Cairo, Dr. Hawkins and her colleagues from the Global Diabetes Institute spoke about their vision, partnerships and work on the ground at the front lines of the diabetes epidemic.

“If I look at the mass I will never act. If I look at the one, I will.” (From a statement by Mother Theresa of Calcutta)

The quote above…I think this quote is at the heart of what inspires us: He’s just a boy.

Isaac is hospitalized to stabilize his high blood sugar and figure out the source of his cough and weakness. He has a bed at the end of the ward hallway — a little corner to himself, except for other patients’ family members sitting on the floor. Problems with his care include not yet getting important tests done, including a sputum sample and a Chest X-ray. Why are his blood sugars high again? Why is he anemic? (To do many of these tests, patients must first figure out payment. Nurse Josephine is reluctant to use our funds, since simple tests should be free for disadvantaged patients. Meanwhile, the tests need to somehow get done...)

Food availability in the hospital is an issue as well; patients need money to purchase food other than the one meal a day provided in the hospital. In Isaac’s case, the nurses always collected money to feed him during past stays, and this time our team is eager to step up to the plate. His first night in hospital, I tried to be helpful by bringing him my available American food from our guest house. While he did munch on my Luna bars (9 grams of protein), he rejected my vacuum-packed tuna and salmon. He’d definitely prefer the comfort of Ugandan foods! Tomorrow marks the final day here for Logan and me, and it’s hard to discern how to help. For now, we’re trying to do as much as we can for Issac and the kind staff caring for him… trusting that, in the process, we will learn more about sustaining the precarious lives of children with diabetes in Uganda.

The goal of this continuing partnership is to develop a formal training program in Uganda: to help meet the country's tremendous need for endocrinologists (specialists who treat diabetes and other hormonal imbalances), and to avoid the need for young doctors to leave the country (often permanently) to specialize in this field. We are planning to partner with Mulago leadership to respond to some promising funding opportunities at NIH and elsewhere. Colleagues at other institutions have agreed to expand our teaching pool, hopefully allowing us to develop a curriculum that will include multiple yearly visits by North American faculty.

As we head out of the hospital, a well-dressed Ugandan woman with rather prominent eyes greets me warmly. Thinking she is a doctor or nurse, I try to remember which of our past training symposia she attended. Then I suddenly recognize her as a patient I treated in Thyroid Clinic five years ago! Her photo is in my office... suffering from an overactive thyroid, she looked very distressed with bloodshot, protruding eyes. Were it not for frequently seeing her photo, I would not believe this healthy-appearing woman could be the same person.

Running into this patient is a tangible reminder of the value of long-term involvement with an institution in the developing world... something that is modeled well by many of my global health colleagues at Einstein. What a joy and privilege it is to be able to touch people's lives, however transiently, on the other side of the world...

Part of me wants to fly home instead, missing loved ones and time to process all of the experiences. Experiences that need to be processed, experiences that are simultaneousy draining and energizing (seemingly opposite emotions, I know, but this place is too rich not to ride the full spectrum).

Yesterday was particularly hard for me in that I met with a type 1 diabetic with whom I had gotten to know well the past few years. She was diagnosed at age three, and is now 29. After her mother died from HIV, this woman’s care was sporadic and inadequate in large part due to a lack of meds and diabetes supplies. In the last few years, she has had access to more treatments, and has become an amazing peer-educator. She has had numerous diabetes-related complications and is currently on hemodialysis awaiting a kidney transplant (would be done in India most likely).

The sad reality is that the transplant will not likely happen, in part because of immediate expense but even more so that her follow-up and treatment in Uganda would be very limited. No meds, no post-transplant treatment center, no to little chance at success. She has been canvassing families, friends, and organizations for donations toward the operation. I sat with her for over two hours, discussing her treatment, discussing the reality of her situation. Astonishingly, she regarded me with peaceful eyes, eyes that saw the reality of the situation without anger or sadness. I said good-bye, wondering if I would ever see her again. I watched her walk away with a knot in my heart. Again, motivation to help make changes here.

Josephine Ejang, diabetes nurse at Mulago and a good friend to Isaac, visited the school to make arrangements. We were excited that Parents' Day would coincide with our visit! However, our plans hit a roadblock when Josephine lost contact with Isaac. During school break, his grandmother was sent to hospital, leaving him alone.

Unable to reach Isaac by phone for two weeks, we decided to go find him. After Thursday's lectures, Josephine and I drove to the village named in his records. We arrived at the 'trading station' — a small clearing with a meager vegetable stall, surrounded by brick or mud-walled huts. Carrying our brochure with Isaac's photo, we headed on foot down a muddy path, trying not to slip on garbage and pig dirt. We encountered about a hundred people — bashfully smiling adults, excited children squealing "Hi Mzungu [white person]" — but no one recognized Isaac.

Back on the main road, we visited "Voice of Gayaza [region]", a loudspeaker on a short radio tower. For a dollar each, two booming announcements requested anyone with knowledge of Isaac to contact us. No one did. We returned to Kampala, rather discouraged.

But luck was with us, as Josephine learned of a second village with a nearly identical name, located five kilometers further down the road! We headed there this afternoon. The first person we met on the outskirts of this village smiled and pointed down the road when he saw Isaac's photo. A couple of hundred yards further, we found a mud-walled house surrounded by children... and standing in the doorway was Isaac! A kind relative had taken him in, but food was scarce.

Concerned about low blood sugars, Isaac had not taken insulin for a week — so we brought him to Mulago to stabilize his blood sugars before taking him back to school. Isaac's arrival on the diabetes ward causes some excitement. He is very familiar to the residents and nurses, who gather around to give him medical attention. Isaac's story is sufficiently heart-rending that these overburdened health professionals go the extra mile...

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Along the roads we pass pharmacies in smaller towns with names like “God’s Love” or “Trust in the Lord”; Ugandans are a very religious people, not unlike many other parts of the world. I find myself reflecting on how Ugandans may make decisions regarding diabetes self-management behaviors. Maintaining diabetes control (for anyone!) requires self-motivation and empowerment, along with knowledge and skills. I wonder where “God will provide” or fate fits in when counseling Ugandan patients and families. Maybe there is a collaborative study needed with our colleagues.

In the meantime, there is a hypoglycemia poster under development and Logan and I have completed seven detailed interviews with doctors and nurses, sometimes under unconventional circumstances. For example, during endocrine ward rounds the other morning, with an eminent diabetes physician and many students and residents, we stopped at the bedside of an individual admitted the night before unconscious with hypoglycemia, possibly from alcohol abuse.

When asked for my input on this patient, I did what any of you would do: I unfurled the poster on the foot of the bed and proceeded to get their ideas about how to motivate patients to prevent and treat hypoglycemia before they pass out. Words of wisdom followed from the attending physician, who noted: “If Ugandan bars or pubs had pretzels and nuts as you do in the West, this may not have happened!” Somehow it will all get incorporated in the poster.

When I arrived this morning, they announced with excitement that they had a case right out of one of my lectures! They led me to the bedside of a patient with classic signs of acromegaly (excess growth hormone presenting in an adult): her hands, feet, jaw, and even her tongue were enlarged, and the loss of peripheral vision in both eyes suggested a large pituitary tumor pressing on the crossing point of the optic nerve. Together, we devised a plan to follow the guidelines from the lecture, despite her lack of funds... a special fund for "teaching cases" would cover the hormone and imaging tests, and pituitary surgery and expensive medication (octreotide) would be arranged with a visiting neurosurgery team and a compassionate drug program, respectively... Where there is a will, there truly is a way...

This morning, we received good news from India regarding two Ugandan patients with recent amputations. On previous ward rounds, I learned that the cost of artificial legs in Uganda, about $400, is prohibitive for most patients... So, our amputee patients were anticipating hobbling on crutches or being immobilized for the rest of their lives.

I remembered touring our partner institution in India, CMC Vellore, where artificial limbs ingeniously crafted from simple materials were provided to patients for a few dollars. My plea for help was answered immediately by our Indian colleague Nihal Thomas, who offered to provide a few custom-made limbs for our Ugandan diabetes patients, as well as to train a Ugandan technician in their methods. This epitomizes why we developed a collaboration with CMC Vellore... instead of introducing North American medicine into the developing world, we have much to learn from these colleagues about providing outstanding care in a resource-limited setting.

Amidst sadness is GREAT JOY! The people here are warm, the food a bit carby but tasty nonetheless, and the monkeys playful. We take turns haggling taxi prices, getting stuck in tremendous traffic jams to make grocery runs (I was the most recent victim).

We finished the last day of our week-long lecture series today, closing in typical Ugandan fashion with a certificate ceremony replete with lengthy speeches and high-power officiates. Seeing the smiling faces and hearing the voices tell us how much they have learned makes all of the hard work in preparing for this WORTH IT! Certificates are very important here as a gauge of accomplishment, so when people were handed one following the close of the conference (crafted by our esteemed Elizabeth Walker and Stephanie Lawrence), suffice to say there was MUCH excitement!

After a research meeting with some residents to help plan a type 1 diabetes project tomorrow, and rounds the next day, we near the close of yet another trip to Uganda and continuation of this work stateside… Until the next time.

The students are at a stage in their training that I remember well...when practical skills haven't yet caught up to one's book learning and desire to help. One student was so eager to read the urine dipstick that he did so immediately, announcing that there was no glucose or ketones...then after learning that he needed to wait 60 seconds, he watched incredulously as the dots magically turned color, revealing the highest possible levels of both!

Intriguingly, the presence of ketones suggests type 1 diabetes, which should be much less common than type 2 at this age and proximity to the equator...so much less common that it was important to contemplate the alternatives, including "Flatbush diabetes", described in African Americans back home, in which patients with what looks like type 2 diabetes (i.e., who can be treated with pills) could go into diabetic ketoacidosis when under stress. By the end of the day, a comfortable-looking patient was sitting in bed eating plums and profusely thanking the helpful students.

On the way back to our guest house, some friendly Ugandans invited me to a faculty garden party. Rather regretfully, I explained that we had plans to dine with a colleague. When we returned, the air was still throbbing with African music... As a stunningly bright moon broke through the clouds and the flowering trees swayed in the night breeze (and as I swayed in the concealing shadow of those trees!), I thought "I must surely have originated from Africa..."

Hypoglycemia in Uganda is especially deadly, as most people do not have access to blood glucose monitoring at home, many people are taking insulin injections, and food is often in short supply—so many risk factors for low blood sugars! Since people living with diabetes in Uganda have almost no educational materials for self-care, we focused on developing a teaching poster.

The creative expertise of the Graphic Arts Center at Einstein produced a first draft of the poster that we then carried to Uganda. Logan and I have completed detailed interviews of three key Ugandan diabetes providers, with several more to come. This is thrilling for me as they patiently give us feedback about word choices, drawings of faces, foods, etc—all things related to prevention and treatment of a low blood sugar. Here’s an example: we had a drawing of an apple in a segment about healthy snacks. Each interviewee said something like “Oh, that’s very nice, but only the rich can afford them.” (Lose the apple!)

This is truly a translation of the concepts into something that Ugandans will understand, and hopefully utilize, to decrease their morbidity and mortality from hypoglycemia. After several more interviews, we’ll move on to draft #2 back in the States and continue the feedback over the internet.

Over the past five years, I've seen a definite improvement in availability of laboratory tests and medications. Nonetheless, a constant mindfulness of scarce resources makes us rely more on symptoms and physical examination...we work together like detectives, combing over assorted clues to solve cases. With infectious diseases rampant on the Diabetes Ward, I probe the foggy recesses of my brain to recall which brain infections are common in HIV/AIDS and which physical signs are characteristic of endocarditis (infection of the heart's inner lining).

The first patient is an emaciated elderly woman who has been losing weight since being diagnosed with diabetes. Her daughter proudly tells us that she has been "withholding food" after hearing in a radio broadcast that patients with diabetes need to lose weight! Fred soberly instructs the residents that patients with "thin diabetes" can be harmed rather than helped by restricting food. A subsequent patient illustrates the perils of treating diabetes when meals are unpredictable...an older woman with finely chiseled features is babbling incoherently, having been admitted a few hours earlier in a coma due to hypoglycemia (low blood sugar). This promotes discussion about how combining medications that decrease appetite (metformin), stimulate insulin secretion (glibenclamide) and suppress the symptoms of low blood sugar (propranolol) proved to be a nearly fatal combination in an elderly person.

Today's lecture on diabetes management went 35 minutes beyond the allotted time, mainly due to lively and practical comments from our Ugandan colleagues...innovative ways to store insulin without refrigeration, traditional dance as a form of exercise, and cost-effective approaches to diabetes treatment...Though given permission to leave at the scheduled ending time, most of the audience chose to stay. As the attendees mob us with questions afterwards, we are deeply moved by their motivation to learn and to provide the best care possible...

We prepare for the lectures today on Cushings and thyroid nodules, to be presented by Dr. Jason Baker. He is a longtime colleague of Dr. Hawkins and mine, having trained in endocrinology at Einstein, and has been a member of the Global Diabetes Institute (GDI) team in both India and Uganda over the last five years. An endocrinologist and assistant professor of medicine at Weill Cornell Medical College, Jason is using his vacation time for this work.

The lectures were quite exciting today as they began with flames coming out of the A-V equipment; however, the endocrine topics, which led to lively student and faculty interactions, soon took over as the main event—there were 54 people in attendance today!

Logan Walker, by the way, quelled the equipment fire as he immediately turned off the power source. He is the fourth member of our team and works as a research technician at the La Jolla Institute for Allergy and Immunology, performing research on phosphatases and their role in certain autoimmune disorders (most notably type 1 diabetes!). He also is currently applying to and interviewing for medical school. As a volunteer for GDI over these 2 weeks, Logan is assisting us with anything and everything, especially IT issues. Thus far, he claims the experience is “one of the most amazing and rewarding experiences of [his] life.”

Later in the day the clouds open up and the rains come in a deluge over several hours. I’m not sure which I enjoy more: heavy rain pounding on the tin roof of our cottage (percussion sounds) or the merry sounds of our neighboring families of monkeys playfully jumping on and off the roof. I’ve told you there is color everywhere; the sounds where we are staying (animals, people going about their work) are also exotic, as we are away from the traffic jams of Kampala and up on a hill near the hospital.

Three years later, a small complex of beautifully designed "pods" is ready to provide critical services, including internal medicine and labor and delivery. The Minister emphasized that diabetes is a significant issue here... My friends will supply me with further information as to how much of this is likely to be 'malnutrition diabetes'.

As we drove along the dirt road toward the hospital complex, we were greeted by the advance welcoming party — dancing, singing, waving branches and strewing flowers in our path! During the ensuing ceremony, about 3,500 people stood in the blistering sun or jammed into a hot tent for four hours of speeches and traditional dances. What became clear was that this effort was a true partnership, with my Canadian friends' initiative stimulating the participation of several Ugandan agencies and NGOs... and the central role of the Minister and other key government officials should bode well for this collaboration. It also hit me that this type of partnership characterizes much of Einstein's global health work, and no doubt explains why Einstein faculty have had such impact in various locations in Africa and elsewhere.

Following the ceremony, there was a great feast of goats and bulls, and I was thronged with children who were fascinated by my white skin and by seeing their images in my digital camera. The grandmother of an albino child thrust her infant grandson into my arms, saying with great excitement: "He looks just like you!"

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Our Ugandan medical colleagues have invited us to be the faculty for the first Ugandan Endocrinology Symposium—two lectures a day, from Monday through Friday of this week. Day 1 had an excellent turnout of about 50 medical students, residents and clinical faculty for lectures on the topics of obesity and pituitary masses, which had been requested by our Ugandan colleagues. During the obesity lecture by Meredith Hawkins, I was surprised to gett a big laugh out of the group by clarifying that, when using a “9-inch plate method” for portion control (basically half of the plate is non-starchy vegetables, one-fourth of the plate protein sources and one-fourth of the plate carbohydrates), that it would defeat the portion control objective if the plate then was piled mountain-high with food! I wondered, why did they think that was so funny?

This fast-paced conference was quickly followed by individual consultation time with Ugandan medical faculty seeking assistance writing research proposals. We leave the academic setting to enter the medical wards, where critically ill patients are cared for with great compassion in spite of the scarce resources available to their caregivers… At this time our role is to teach—attempting to empower and activate the doctors and nurses with knowledge. We end this day feeling energized.

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The next visit (5 months later) felt completely different. When we drove down the same roads, my eyes were somehow blinded to the squalor and saw only the lush vegetation, the beautiful people, and the warmth of their interactions. Where before I saw a ramshackle hut, now I saw a neatly arranged clothesline and girls with intricately braided hair. By the end of our stay, I was thinking "clean water is overrated"...I came to value the richness of life as measured by human interactions, and such courage and grace despite adversity.

As I begin my seventh visit to Uganda, driving past hazy outlines of people thronging the roadside night markets, I realize that getting to know more people's stories has given me a rather sober view of life here, and the first emotion is deep sadness. Thankfully, we are met at the airport by the Canadian colleagues who introduced me to Uganda...as they bring us up to speed with exciting developments at a clinic they founded and a small hospital they are building up north, it is impossible not to catch their infectious hope...and we share our excitement about the Endocrinology program we are building in partnership with Ugandan colleagues, and the emails of welcome we received before we left New York.

Yes, there is much to be done...and also much to be learned from the vitality and spirit of the people here.

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