Francine Ratner Kaufman, M.D. has had a 30 year distinguished career in diabetes care, research and advocacy. In 2009, she stepped down as director of the Comprehensive Childhood Diabetes Center, and head of the Center for Endocrinology, Diabetes and Metabolism at Childrens Hospital Los Angeles to become Chief Medical Officer and VP of Global Clinical, Medical and Health affairs at Medtronic Diabetes (Northridge, CA).
Below is a message from Dr. Francine Kaufman, who did a live interview on TuDiabetes last January.
We are back from our third trip to Haiti with renewed respect for the Haitian people who are able to survive, and sometimes thrive, in circumstances that are still quite dire and unimaginable.
To see some pictures from our trip click here http://dpshealth.com/haiti/haitiphotos.html
When we arrived in Port au Prince, the overcrowded and vibrant Haitian capital city of about 1.7 million people, we could immediately see that Haiti had improved since our last visit one year ago. The airport runway and unloading docks were relatively devoid of clutter and the recently opened terminal in the airport was what you’d expect to see in the developing world. There was an easier exit to the parking lot, not like in the past when we had to walk past hundreds of people all trying to “help” carry our luggage, find us a ride, and take our money. On the way to our hotel we saw more paved roads, less of the ubiquitous rubble, fewer collapsed buildings, and some new construction sites. The sidewalks were full of people selling nearly everything a person needed - food, clothing, paper goods, fans, electrical cords - and the streets were still crowded with people darting dangerously into the road. Most people in Haiti make money in this underground economy so dashing around is key to their existence.
Our visits to Haiti are in collaboration with Dr. Nancy (an endocrinologist) and Philippe (an epidemiologist) Larco, Nancy’s father Rene Charles (85 years old, an endocrinologist and previous Minister of Health), Evelyn Fleury-Milfort (a Haitian born certified diabetes educator/nurse practitioner and friend from LA), and Merith Basey who works for AYUDA (a youth empowerment group that runs camps in Ecuador and the Dominican Republic that we helped start 15 years ago with their first camp in Ecuador). Nancy Larco’s family started and runs FHADIMAC, the Diabetes Association in Haiti that has a huge diabetes clinic in Port-au-Prince, sponsors an annual diabetes symposium, performs diabetes screenings, and tries to coordinate the care of diabetes patients throughout the country. They also host the Life for a Child Program (run by the International Diabetes Federation) that gives free insulin, a glucose meter and enough glucose strips for 1-2 blood glucose determinations a day for all poor children with diabetes – which is the best that can be done in Haiti. Diabetes supplies and insulin also come from Insulin for Life (we are on the board of the Insulin for Life USA affiliate). FHADIMAC and Nancy coordinate our diabetes camp and all our activities while we are in Haiti.
This year our camp was North of Port-au-Prince, along the beautiful coast and in what could be considered a resort. The ocean view was magnificent the vegetation luscious and for a minute, we almost forgot we were in Haiti, but when we focused down, the ‘resort’ hotel was run down, the menu was replete with goat and conch, and the healthiest thing to drink (or eat) was coca cola. The children – our 43 campers - were amazing. Many of them were away from home for the first time, and they had never been to a hotel or a restaurant. At lunch, they stood quietly in line while we doled out their food. When limited seconds were offered, there was a rush to the table as if they feared this might be their last protein-replete meal. Most left home at the crack of dawn – by themselves - and they weren’t sure when they would arrive and what food we would have. So they treated their constant food insecurity the way they usually did - by not taking their morning insulin injections.
We had to show many of the kids how to use their bathroom and shower. Many had never seen a fully equipped bathroom with a flush toilet, sink and shower together. Many still live in tents. The estimate is that at least 300,000-400,000 people are still in tents in Haiti (down from over 1.2 million right after the earthquake 3 years ago and 700,000 when we were here last year), and many others have been moved from tents to prefab 12feet X 12feet plywood houses with no electricity or running water. This maybe a better option, but certainly it is not a long term solution.
On our first night at camp, we broke the ice with a well-known camp ceremony where kids are given candles, and after they talk about their own diabetes and make a wish, they then blow their candle out. It was heart wrenching to hear about our campers fears of rejection, complications, and mortality. In many ways they sounded just like all the other kids around the world facing this disease, but then they talked about not being able to get to the doctor, or not having all the medicine they needed, and they distinguished themselves as being different – being Haitian – from most others across the globe. A stately 19 year old girl described her diabetes as her identical twin sister - always there, sometimes hard to control, and hard to love, but with her every day for the rest of her life.
Our time at camp was incredible. During the days, the kids took turns bouncing up and down in the pool since almost none of them can swim, despite living their entire lives on a tropical island. There was time for impromptu soccer for the older boys, done with a ferocity otherwise not seen by these polite and almost submissive youth. We had minimal arts and crafts (unfortunately), flooded toilets (evidently our instructions on how to flush a toilet – something many of them had never done- were not sufficient) and a talent show. It was amazing how willing these kids were able to stand in front of the group and do just about anything. Most of the boys acted out stories and the girls danced around to blaring music – with too many suggestive poses. Twenty-three year old Nadine - with developmental delay- sang off key some well-known Haitian song while all the other kids listened and then clapped, rather than laugh her off the stage. Nadine was with us last year, and we wrote about her remarkable journey after the earthquake which killed most of her family. She lived for a while alone on the streets until she walked for weeks – by herself – to an orphanage in the mountains. Fortunately, she has remained at the orphanage, which usually releases those over 18 years, but between her cognitive problems and her diabetes the nuns of the orphanage have decided to keep her.
Blood checking and insulin times were total chaos (we did have help from Howard Steinberg who joined us for a few days). Most of these kids check their blood glucose levels once a day – twice at the most – and more often than not, not at all. So checking them 8 times a day was a curiosity for them all. They were amazed to see low blood glucose values when they had them, and by the end of camp, thrilled when they got a normal number. Too many of our campers had poorly controlled diabetes (A1C’s > 14%), putting them at very high risk for the long-term complications of this disease and early death. They take an antiquated insulin regimen - a premixed combination of short acting and intermediate acting insulin used by children only in the developing world. This combination may be the only safe (and affordable) way to treat type 1 diabetes because most patients do not have the ability – or motivation - to check their blood glucose levels an adequate number of times a day at home to adjust their insulin doses and improve their glucose control. Our dream has been to try to help some of the older kids come into the modern era of diabetes management, but so far – after three years - we have been unable to turn that dream into a reality. The support to make that happen just doesn’t exist with all the other challenges providers like Nancy and these kids and their families face.
We had two remarkable medical events during camp. One camper had a bad low blood sugar reaction in the middle of the night – not uncommon in camp. It was Nadine on the night of her song (she was so excited she forget to eat her bedtime snack). Another girl (22 year old Anne) “went to ground” in the middle of the day. The staff rushed to get help, and when we arrived Anne was totally unresponsive. Her blood sugar was the best it had been, and after a negative medical assessment, while an IV was being prepared, the nurse who knew her charged onto the scene. She announced “hysteria” was not an uncommon in Haiti. After we raised Anne’s arm over her head and released it, and watched her move it to avoid smacking her own face, we were pushed aside by the nurse who pinched her, splashed her with water and held her nose shut, until she gasped, opened her eyes, and got up and left as if nothing had happened. It was brushed off as just another day in Haiti.
We shared with the kids about a family who donated money to support camp. Adam’s mother and his brother with diabetes donated a generous gift to the camp in Adam’s honor (Adam died suddenly at age 17 from a cardiac event). We showed them Adam’s picture and told them about the gift. They quickly wrote out a sign that said Merci, took the pictures from my hand, and assembled themselves to take a picture to thank this family. Then they prayed for Adam….and perhaps for themselves.
In addition to camp, we visited hospitals and taught 400 nurses, doctors, dieticians and psychologists (very rare in Haiti) during the 3rd Annual Diabetes Conference sponsored by FHADIMAC. We went to the Haitian General Hospital - the hospital of last resort in a country where even the first resort isn’t up to U.S. standards from the 1960s. Unfortunately, we saw no improvement in the hospital buildings since our visit a year ago. Although a new hospital complex is being planned (unclear as always in Haiti as to when), the present structures - barracks and make-shift trailers - are overcrowded and crisscrossed with IV poles, cribs, gurneys, benches and people. Children admitted with diabetes out of control (DKA) to the General Hospital are getting better care than a year ago thanks to help from FHADIMAC and in part because of donations of diabetes supplies we were able to get them during our visit last year. Children often stay 3-4 weeks before they are well enough to go home, compared to our 2-3 days. This is due in large part to their underlying poor nutrition, high infection rates, and inadequate conditions in their homes. After discharge, they are sent to FHADIMAC and Nancy, where they get better care for their diabetes compared to what is available any place else.
We also visited one of the only Women and Children’s Hospitals in Haiti. Run by a Catholic charity and situated on the outskirts of Port-au-Prince, this 126 bed hospital sees children with malnutrition (there is a whole ward with the most emaciated children we had ever seen and who usually remained hospitalized for at least a month just to gain weight), cholera (another ward- empty at this time because cholera is seen when it rains hard enough to move infected sewage into the drinking water supply, and right now there is a drought), meningitis, pneumonia, HIV, whooping cough (pertussis), sickle cell, heart disease, and acute surgical problems. There was the busiest emergency room we have seen where every child needed at least IV hydration and antibiotics. The hospital was so crowded they had to keep a child with bacterial meningitis in the ER on IVs and medications for 3 days waiting for a bed. Three hundred women deliver there a month, all with complicated pregnancies (most poor women deliver at home…wherever home may be). The Neonatal Intensive Care Unit didn’t have a ventilator, but they were attempting to keep a 640 gram, 27 week gestation, newborn alive. There was a ward where nearly a dozen abandoned children languished, waiting for placement in an orphanage, most of them with severe neurologic disease that is simply not compatible with being able to survive in Haiti. The hospital and outpatient clinics are bright and airy, with unbelievably dedicated doctors and nurses. However, their funding has been drastically cut this year, and they will have to close 40% of their beds, with no concept – when asked – as to who will care for the desperate patients they will soon have to turn away.
FHADIMAC has been able to make modest gains throughout Haiti. Nancy hired ten of her young adult diabetes patients over the last year to help with the conference and with diabetes support and teaching throughout Haiti. A kind-of-cottage industry that we encouraged Nancy to try to establish to help assure that these children not only survive with this disease, but have a future with dignity and income. FHADIMAC has also advanced and expanded the diabetes lecture series each year– with more attendees, broader topics, more up-to-date concepts. The ongoing challenge is to translate increased provider knowledge into better diabetes practice in the context of a healthcare system that is holding on by a very, very thin thread. FHADIMAC is working now to secure funding to implement a national education and certification process for diabetes centers to hold the hospitals and clinics across the country accountable for the quality of diabetes care they provide.
Haiti is like a mix-master for our emotions. We were bug-bitten, always sticky and sweaty, covered in DEET and on malaria prophylaxis. But as in previous trips, there was something magical about being in Haiti… our camp, being with the kids, teaching in the conference and clinics, and seeing the hospitals. We were concerned about how poorly controlled the kids’ diabetes was, but we know we can’t solve that problem quickly. Or the abject poverty these kids – this country – have experienced. We don’t know if taking the kids away from their tents or 12x12 homes for a few days of camp helps in the long run or hurts. Many of these kids saw a flush toilet, an air-conditioned room (one young girl keep complaining it was not natural to be so cold), and a soft bed (the girls were two to a bed, it was not culturally appropriate for the boys to share a bed so we shoved extra beds into their rooms) for the first time. They had more food (particularly protein) than usual, and more attention paid to them and their diabetes. In the long run, will it help motivate them past the apathy, or perhaps fatalism, that in some ways characterizes Haiti?
Haiti is a country still in disarray, and all life seems tenuous, and made even more so by diabetes. We struggle to try to find out how to make a difference, how to support Nancy and her efforts in Haiti – knowing full well, she and her colleagues ultimately have to be the ones making the changes that will finally transform their country into a place where the kids with diabetes will have a chance to dream.
Unfortunately, Nancy and her kids need financial help. Please consider making a tax deductible donation -make checks out to Communities Rising and send to our home: 1401 N. Bundy Dr. LA 90049 - or follow the link below to visit our nonprofit fundraising webpage:
Select “Communities Rising” from the drop-down menu and then make your donation.
Funds will go directly to help Nancy run diabetes camp again next year, hire and train more young adults with diabetes, provide needed insulin and blood glucose testing materials, and build a country-wide system of diabetes education and care.