A Personal Reflection on Diabetes Management in Vietnam
By Nicola Fiddes
I came to Sydney from the United States in the beginning of June for an internship with Caring and Living as Neighbours (CLAN), a non-profit NGO that aims to help increase the quality of life of children living with chronic illnesses in resource-poor countries. As a psychology student, this placement offered me many great opportunities to practically apply everything I have learned in the classroom, along with the amazing chance to travel to places I had never been. However, unbeknownst to those arranging my placement, the opportunity to work with CLAN related to me on a much more personal level. I was diagnosed with type 1 diabetes when I was two years old, which is now nearly 19 years ago. When I learned that CLAN worked with children with diabetes, I was excited about the opportunity to help families dealing with the disease because I know all-too-well the difficulties and complications that can arise. At least, I thought I knew, but as it turns out my life would be completely changed by my time spent working with CLAN.
The International Diabetes Foundation (IDF) estimates that there are about 1.9 billion children, ages 0-14, in the world, and that about 479.6 thousand of these children are living with type 1 diabetes. For those who are unfamiliar with the disease, type 1 diabetes is a chronic Non-Communicable Disease (NCD) disease affecting the pancreas’ ability to create insulin, a hormone needed to turn glucose in the blood into useable energy. [i] Therefore, people with type 1 diabetes can have dangerously high levels of glucose in their blood and need life-long insulin treatment to survive. In addition, good management of type 1 diabetes requires frequent blood glucose monitoring with costly glucose meters and test strips. In developed countries, such as Australia, Europe and the United States, such treatments are widely available and often covered by health insurance. However, due to geographical and financial conditions, many families facing type 1 diabetes, especially those living in low and middle-income countries, do not have access to the supplies necessary for survival.
Poorly controlled diabetes can lead to a number of serious long-term complications, such as blindness, kidney failure, nerve damage, thyroid problems, and more. In addition, there are very serious acute complications associated with diabetes. Severe hypoglycemica, or low levels of sugar in the blood, can cause the patient to lose consciousness and if not treated immediately can cause death. On the other hand, hyperglycemia, or high blood sugar levels, can cause a life-threatening illness called ketoacidosis, in which sugar is found in the urine. Ketoacidosis is treatable, but immediate medical care is needed. As with any chronic illness, diabetes management takes a huge toll on the families, both financially and psychologically.
While these complications are risks I have always known about, they have always loomed far ahead in my future because my blood sugar levels are well controlled. I grew up in northern California, and both of my parents have PhDs in molecular biology, and both had participated in diabetes research long before I was even born. They knew my diagnosis before they even took me to the hospital to have my blood sugar checked for the first time. They also knew the many possible complications that their then-two-year-old daughter could face. And they knew my life would never be simple. Life with a chronic illness never is. I can only imagine the fear and sadness that they felt. Yet, they managed to take these emotions and work their hardest to give me the happiest, healthiest life possible. For this, I am unbelievably grateful – without the efforts of my parents I could not be the person I am today.
For the next 16 years of my life, I was seen by some of the world’s best pediatric endocrinologist at Stanford Hospital in Palo Alto, California, every three months. At each of these visits the doctors would measure my HbA1C (a standard way of gauging one’s level of control), height, weight, thyroid levels etc., and would discuss my current insulin dosages with me in order to obtain my best possible level of control. When I was eight years old I switched to the insulin pump, a device that allows for even tighter management of my blood sugar levels. I have only ever had one diabetic emergency, and luckily I was surrounded by friends who understood my disease and knew to call for help. I have always been able to pick up my insulin from a local pharmacy, three or four bottles at a time, and have never had to worry about how I will pay for next month’s supplies. I also have completely healthy eyes that are thoroughly checked once a year, no problems with my feet or nerves, and I manage this all by testing my blood sugar up to ten times per day.
Through my work with CLAN I attended the Diabetes Club Meetings at three hospitals in Vietnam in July of 2011. Coming from the background that I do, full of opportunities and information, I cannot fully describe my shock at the current state of diabetes care in Vietnam. Honestly, no matter how much research I had done before or how many times I was warned about the lack of support for these families, nothing would have prepared me for the harsh reality check I would receive while attending these meetings.
These annual meetings are the only time families have the opportunity to come together and receive the latest advances in diabetes management and education. Families travel from all over the country, some from over 300 km away from the main hospitals. [ii] Dozens of children were lined up waiting to have their height and weight checked, while others were crowded around the HbA1C testing table. Most of the hospitals in Vietnam do not even have their own HbA1C machines. These machines were only here on the day of the meeting thanks to CLAN’s efforts and all families were offered free testing. For many of these families, HbA1C testing was not available until CLAN’s donations in 2007, and even now most only receive testing once a year. In contrast, having seen a doctor every three months for 16 years, and then every 5-6 months for the three years I have been out of pediatric care, that means I have had my HbA1C checked over 50 times in 19 years of living with diabetes. For me, regular HbA1C checks serve as feedback for how well I am controlling my values, and motivate me to find where I may be able to improve.
What struck me even more than the simple lack of HbA1C checks were the levels themselves. In general, a person with good control, and thus at lower risk for complications, should have an HbA1C of 7.5% or lower. With the insulin pump I have achieved this level of control. I am still struggling to put into words what I felt when I learned that a handful of these children had HbA1C levels of 14%. [iii] That’s a number that I cannot even fully wrap my brain around – it is so much higher than anything I have ever come near. I work for lower levels so that I have fewer complications many years in my future; these kids need to bring their levels down simply to have such a future.
Moreover, the disparities in accessibility of education and support absolutely astounded me. For our trip over to Vietnam from Sydney, members of CLAN packed very lightly so that we could fit hundreds of translated Vietnamese copies of Geoffrey Ambler and Fergus Cameron’s Caring for Diabetes in Children and Adolescents, a great all-encompassing guidebook on diabetes care. For some of the families, this was the first full version of this book they had received. For families that cannot regularly contact doctors for a variety of questions (i.e. dosage levels, emergencies, sick day management etc.), this book may be able to save many young diabetic lives. I cannot even begin to count the number of books my parents have on diabetes management, and that is in addition to their previous personal knowledge of the disease and our constant contact with diabetes specialists. As with any chronic illness, education is crucial, and can even be life saving. I cannot begin to imagine what life was like for children and families living with diabetes before this now seemingly basic information was translated into the Vietnamese language. And from what I have gathered, such a life often did not last long or has resulted in serious complications. Again, this is a reality that is so far removed from my own that I am still struggling to comprehend it.
In the end, my experiences in Vietnam really boil down to one underlying theme: a complete shock at the difference in standards of care. Whether it is due to the distance between hospitals or lack of supplies, the fact is that these young children living with diabetes simply do not have the same opportunities to live the healthy life I have lived. Now, I know it is not fair to myself to compare my life to those of the families I met in Vietnam – they are simply different on too many fundamental levels to do so. However, being thrust into the heart of life with diabetes in Vietnam, I could not help but look at their conditions in relation to mine.
Leading up to these meetings, I was asked to compose a short speech on my life with diabetes, including a PowerPoint presentation with pictures from my childhood. The point of the message was to be one of hope and encouragement. I filled it with inspiring words, congratulating the parents on educating themselves for the sake of their children. However, what I didn’t realize was that the true message of inspiration was not found in my words; the mere fact that I was standing there, 19 years into the disease having led a happy and healthy life, was enough in and of itself. When I took to the stage, the room was silent, with all the attention on me. Parents listened closely, and pointed me out to their children. Little girls were snapping photos of me on their parent’s phones, and when it came to question and answer time, there were many directed towards me, asking about simple day-to-day things I did growing up. One mother began crying with joy simply upon being introduced to me. It was one of the most overwhelming experiences of my life – I couldn’t believe that my simple existence could ever be enough to elicit such reactions. I don’t think I can put into words how it feels to have hundreds of parents and children looking at you with complete awe.
Upon reflection of my time in Vietnam I could not help but ask myself, why is it that these children are not granted the same level of concern as I was as at their age, and still am today? I was born in a different place, to different circumstances, and therefore I know that it is not my fault that I was given all the opportunities while these children and families seem to be given none. In truth, it is because of this acknowledgement that I have not withered away with guilt each day since returning from Vietnam. As sad of a reality as it is to accept, there will probably never be complete equality of treatment throughout the world. While it has taken some time for me to come to terms with this, the truth is that it is unreasonable for me to demand that every child in Vietnam receive exactly the same treatment that I have, especially considering there are people even in my own country who have not.
However, there is absolutely no reason that a child in Vietnam – or any other low or middle-income country of the world – should not be granted the opportunity to live a happy, healthy life. It is appalling to me that there are still children dying from or battling serious complications of diabetes considering there is a known treatment for the disease. If my memory is correct, insulin therapy was discovered in the 1920s, nearly a century ago. And yet, there are still people out there who do not have access to it. Every child has a right to life, and it astounds me that there are still people all around the world being denied this – a right that was practically handed to me in comparison. Ruminating on this fact for too long will only make you depressed and discouraged – trust me. After spending some time working through my experiences in Vietnam, I have realized that instead of asking myself why the world seems to be so unfair, I must ask a different question: What can I do to help? More specifically, how can I help work towards providing equal opportunities to a healthy life for children around the world?
I am glad to say that my work with CLAN has both opened my eyes to the troubles facing children with chronic illnesses in countries with limited resources, and also helped show me where my role in helping them is. As tempting and easy as it is to fall into save-the-world mode, and convince myself that I can fix all the problems, clearly this is not realistic. In fact, CLAN’s focus is on helping people in countries such as Vietnam to help themselves – there is only so much outsiders can do to help. CLAN’s work follows five main pillars for the best ways to help children living with chronic health conditions in resource-poor countries: ensuring affordable access to medication and equiptment; education (of families, health care professionals; policy makers and the international community); optimization of medical treatment; encouragement of family support groups; and reducing the financial burdens on families that result in poverty. These pillars, while they will take a certain amount of charitable effort, are aimed at mobilizing people to fix the system from within. And so, while my role when meeting the families in Vietnam was to encourage and support, here I work towards educating all of you – on what life with diabetes can be like, what the harsh realities are for these young children, and how you can take action to help our efforts.
No child should be dying from a disease that is perfectly manageable in other parts of the world. That simply is not right. Through the work of groups such as CLAN, the needs of these children and families are slowly being brought to the attention of the international community. In September of 2011 there will be a UN Summit meeting on NCDs, for which CLAN is working hard to have the voices of the world’s forgotten youth heard. Something drastic needs to change, and I implore you to take action. I truly hope that hearing of my emotional journey through Vietnam can inspire you to help in some way. International awareness may be the first step to finally getting these children the care they need and deserve.
[i] Ed. Geoffrey Ambler and Fergus Cameron. Caring for Diabetes in Children and Adolescents. Third Edition. Blue Star Print Group. Australia. 2010.
[ii] Personal Correspondence, July 11, 2011. Hanoi, Vietnam.
[iii] Personal Correspondence, July 11, 2011. Hanoi, Vietnam.