“Kenyans living with diabetes” or “Diabetes Patients”?
Over the last short while, I have had a very rewarding opportunity to lead a unique and innovative community based diabetes awareness and care effort supported by Lifescan Inc. (Johnson & Johnson) in Sub-Saharan Africa, out of Nairobi, Kenya. This effort, aptly dubbed Embrace Africa has filled a long standing gap in my resume, namely to participate in a truly, community based effort that directly impacts less advantaged members of the community in health related matters.
In this endeavour, I have had the opportunity to meet and interact with very many people and groups of people. In all this, one group stands out. This is a group of non-professionals who have been affected by diabetes in one way or other, and their “friends”, and who have come together to create an advocacy group, under the name of Kenya Defeat Diabetes Association or KDDA.
KDDA is a truly grassroots organization in every sense of the word. Created and nurtured by a team led by two passionate, driven and motivated leaders in the names of Reuben Magoko and Jane Muthoni Kigotho, (also known as “”Muthoni Wa Sukari” by supporters and peers, which loosely translates into “”Muthoni of Sugar”), KDDA represents and seeks to bring together people diagnosed with two chronic conditions of increasing significance in the developing world, namely diabetes and high blood pressure (BP). KDDA has been in existence for only about three to four years now and boasts of a country wide network in Kenya and one that is still growing very rapidly. Organised into County based chapters in the country, KDDA seeks to be a voice of the voiceless affected by these two chronic conditions by organizing chapter based fora on monthly or biweekly rotations where various activities are undertaken. At these fora, members of the community may receive diabetes and blood pressure screening either free of charge or for a small fee. More importantly though, they receive education and counselling on benefits of proper nutrition and being physically active as a way of managing their conditions. They are trained and advised on the critical need to conduct Self-Monitoring of Blood Glucose (SMBG) in their own homes. It is at these kind of fora that members are trained on the difference between physical activity and exercise.
Often, at these meetings and training sessions, we have debated on proper terminology to use for the KDDA members; are they “People living with diabetes” or are they “Diabetes Patients”?
What is the difference you ask?
Plenty. Plenty indeed.
The way different people respond to this question has a lot to with the psyche of those involved and may as well affect how well they manage their chronic condition including how well they comply with their SMBG and insulin treatments regimens.
Most of the members of KDDA are regular people who attend the fora or “clinics”. They leave behind their regular, day to day or “hustling” activities in order to attend the meetings. They may be active or retired teachers, farmers, bankers, accountants, businessmen, politicians or even former health care workers themselves. While most members have been diagnosed with diabetes for various durations, and may be on oral or injectable medications, they are nonetheless still very active people and contributing members of the society. They are “people living with diabetes” and not patients. As noted, they lead very active lives, earning a livelihood, contributing to the economy, educating their kids and are motivated enough to take care of themselves for the most part, although they may need some support in doing so. This is especially due to the high cost of managing their conditions, particularly in terms of regular blood glucose monitoring as well as the medications. You do not want to label this group of people as diabetes patients.
Diabetes patients, on the other hand are people living with diabetes who have not taken proper care of themselves and have ended up lying on the hospital bed, or even incapacitated in one way or the other in their own homes. They are mostly sick and many may already be suffering from one or more of the myriads of diabetes long term complications. They are no longer able to lead active lives, and, may in fact need help to get by. Although the long term complications may be compounded by other attendant health issues, most of the complications including loss of vision, renal failure, high blood pressure, stroke, heart failure, and diabetic foot can be directly traced to long term diabetes that has not been properly managed. These conditions end up being the most difficult and expensive medical consequences to treat and manage as they often lead to lengthy hospitalizations and expensive surgeries or medications.
In conclusion, what does all this therefore mean?
Most, if not all, the chronic conditions remain as lifelong diseases that have to be managed for the entire life of the individual. Although many efforts are underway in the medical fraternity to find cures for chronic conditions, these efforts are largely still in the discovery phase and unavailable as treatments. In the short to medium term therefore, or at least until we get the new regenerative medicine approaches or therapies into the clinic, the best results will be realized only by careful and deliberate efforts to manage these conditions. Simply put, therefore, it means that as health care professionals, governments, and other stake holders in the health industry, a major goal should be to not graduate “People living with diabetes” into “diabetes patients” category for as long as possible, and if possible, for their entire length of their lives following the diagnosis. And so it is with KDDA members, who strive to remain as “people living with diabetes” rather than as “diabetes patients”.
Written by Dr. Francis Karanu; Contact at Karanufn@yahoo.com
Dr. Karanu is a past Leader and Manager of Embrace Africa, a Lifescan (Johnson & Johnson) Initiative for Sub-Saharan Africa