Portrait of a tireless advocate Professor Eltom in the diabetes clinic with a patient.   A native of the Gezira State in Sudan, the 57 year old Prof. Mohamed Ali Eltom has been a tireless advocate for building up awareness and infrastructure of diabetes care in the country. His portfolio includes posts such as Secretary General of the Sudanese Diabetes Association and the Sudanese Association of Physicians; Coordinator of the National Diabetes Programme as well as authorship of numerous research papers. Prof. Eltom originally did his Ph.D. on thyroid diseases at Uppsala University Hospital in 1984, but he has later shifted to the field of diabetes. "When I was doing endocrinology in clinical practice in 1986, I realised that diabetes was the main problem in endocrinology accounting for 70% of the cases. But there were few resources. At that time, there were only four diabetologists in the entire country - and an estimated one million people living with diabetes," he says. Motivated to continue "Realising the burden and the almost non-existing access to care and medicine was my real motivation to start doing something on the issue of diabetes care. I remember having patients and no vials of insulin to give them. I knew the few people who had vials and would then send the patients there, but that was no guarantee for treatment. At that time, the prices were low, but importation and storage were difficult. We addressed the issue on TV and to patients. Some of the patients even ended up living in the hospital because that was their only secure way of having access to insulin. This was a big frustration for me and at one point I even considered leaving the job, because I had so few means to carry it out." 42% prevalence rate amongst the decision makers! But in 1994, the first national diabetes survey was conducted and it documented a 3.4% prevalence nationwide (the South excluded)(1). Based on this national survey, it was recommended that a National Diabetes Programme (NDP) was established. This happened in 1996 and it was positively met by the Federal Ministry of Health. From then on a sensitisation process began and finally in 2001 a big workshop for senior civil servants, executives and ministers was held. "We tested all of the participants for diabetes and found a 42% prevalence rate among the participants! This helped them understand that the problem of diabetes was very much their own personal problem as well. They all ended up acknowledging the burden of diabetes, but it did not result in any allocation of funds for the area. But we did succeed as advocates and more health workers were also assigned to diabetes care." In 2003, the NDP was dissolved as a vertical programme and integrated into the non-communicable disease section at the Federal Ministry of Health. "This was of course good as we strife for integrated care, but for a moment diabetes lost its strength." Within the area of diabetes, there is now an independent umbrella non-governmental organisation called Diabetes Programme Promotion Organisation (DPPO). The DPPO aims at strengthening diabetes organisations and initiatives and currently comprises diabetes health workers, but it also encourages patient organisations to be active. Doing a lot with few means "Although much is still left to be done, progress has been made. Today, we have 40 diabetologists in the country and the Sudanese Diabetes Association was recently re-registered as a member of the International Diabetes Federation. If it had not been for the support we have received from the World Diabetes Foundation since 2004, we would not have advanced from the status we were at in 2003. Although the support has not been much on a grand scale, it has facilitated activities and projects to be set into motion. And in the projects, people manage to do a LOT with very LITTLE." No central register "It is very difficult to organise a central register of type 2 diabetes in Sudan. First of all, the country is vast and communication is weak. Furthermore, people go to different levels of care and to private clinics and they have no formal registries. I guess that around 60% of people with type 2 diabetes receive treatment and consultation in private clinics. Maybe in the future, and with a better information system, at least in the hospital setting we will have better registries." Prof. Eltom estimates that around 1 million people in Sudan lived with diabetes in the mid-90s. Due to population increase as well as a change in lifestyle, he estimates the number to have doubled by now. But getting the figures right without a central register is a challenging task. In the latest Diabetes Atlas from 2009, IDF estimates 675,300 people between 20 and 79 years to live with diabetes in Sudan. But if the national prevalence is 3.3% and the population is 43 million, the actual number ends at 1.4 million people.(2) With no central register, the actual number of people living with diabetes in Sudan remains a crude estimate. But the eye seldom lies, and during his many years of working with diabetes, Prof. Eltom has seen an increasing number of cases. From local to national The eight projects supported by the World Diabetes Foundation have worked as a pilot for formulating a nationwide programme. "In my view, the prospects for a diabetes programme covering the entire country are very good. Now that we have developed a system and laid down a formula, there is a level of integration between the different institutions and there is consensus among the partners, the disciplines and the levels of care. All this knowledge and these experiences need to be put into paper and action." "But it is important that a national diabetes programme is anchored within the Federal Ministry of Health and integrated into a wider NCD-programme. We will need to coordinate with NCD-projects of the same calibre to be implemented in the different states and supervised and managed by the DPPO. We will also need to involve all the different stakeholders for at least four to five years; and we will need to develop diabetes associations from the roots, i.e. as patient organisations advocating for support. These initiatives need to go hand in hand. With this combination, the diabetes model will be a model for all NCD- projects." At least an ambition Whether "national" will comprise all of Sudan's current 26 states or not, is not in the hands of Prof. Eltom or his colleagues in the health sector. "Presently, there is no communication between North and South. We have no access to information - we are completely blind. We operate like two countries. But I would like to emphasise that this is not due to professional intention." "To build bridges between North and South is a dream. Maybe a bigger project with more magnitude can do it. But right now, there is a lot of asymmetry. We see some people coming from South to North to get care, but there is no collaboration at a strategic level. But the World Diabetes Foundation may bridge the gap through project work and make parties learn from the other. It may at least be an ambition," he diplomatically concludes. / By Brit Larsen, Communication Coordinator at the World Diabetes Foundation      Who is affected? "Diabetes is more pronounced in the urban elite, but it also affects the rural and the poor populations. Urbanisation is really the problem (3). We usually say that diabetes spreads from the centre and out - the centre being Khartoum spreading towards the northern and western states. Another factor is ethnicity and there is a clear tendency of higher prevalence in the north with mainly Arab populations." Dr. Mohamed Eltom    References 1. Elbagir et. al http://care.diabetesjournals.org/content/19/10/1126.abstract 2. According to UN World Population prospects (2008 revision), Sudan's population in 2010 is projected to 43.192 million (If we estimate that 25% of these live in the South, the 3,4% prevalence should be calculated from 75% of the 43.192 million. Based on this, the actual number of people with diabetes in 2010 is 1.101.396). 3. In 2010, and estimated 45.2% of the population lives in urban areas. http://esa.un.org/unup

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