Sponsor a Child and Save a Life

Transcription

1 EDITORIAL FEATURE Sponsor a Child and Save a Life Graham Ogle and Martin Silink The village, in Papua New Guinea, where Jacklyne lives was opened up to the outside world in 1949, and even today requires a four-wheel drive route along precipitous mountain roads to access it. Families of children with diabetes in developing countries are facing an impossible situation. In these regions, the full cost of managing a child with this condition is higher than the average total annual income. Consequently, children with diabetes frequently die quickly. To help alleviate this situation, IDF has commenced a sponsorship programme aiming to support children with diabetes in developing countries. The programme, Life for a Child, was launched at the 17th IDF Congress in Mexico City in November last year. 6 Diabetes Voice Volume 46 June Number 2/2001

2 Children with Diabetes in Developing Countries Die Too Soon In most developing countries, families of children with diabetes, such as Jacklyne s, need to pay for most or all components of care. The full cost, excluding doctor s fees, of managing a person with type 1 diabetes is US$ per year. Many children receive insulin intermittently or in too low a dose. They cannot afford glucometers or testing strips, and so are unable to control their blood sugar levels. Often, doctors are not highly skilled in managing children with diabetes, and usually there are no diabetes educators, dietitians or social workers. Jacklyne is from the highlands of Papua New Guinea. She is nine years old, and was diagnosed with type 1 diabetes in The district where her village lies was opened up to the outside world in 1949, and even today requires a four-wheel drive route along precipitous mountain roads to access it. The area has no electrical supply or telephones, and the health centre has no experience with diabetes and is frequently without even basic medicines. The family has been forced to live in poverty with relatives on the edge of larger highland centres, using expired insulin. Jacklyne was thin and unwell, with visual disturbances and overall in a very perilous situation. She was unable to monitor herself. However, with funds from the Life for a Child programme we were able to fly her and her father to Port Moresby for education. She is now in good control, confidently administering her own injections, performing blood glucose monitoring at home and feeling much healthier. Children with diabetes die too soon or, at the very least, achieve only very poor control (with HbA1c around 12 to 14 percent or more). Quality of life is poor, with constant excessive drinking and urination, and generally feeling unwell. Often these children never finish school. They find it hard to get married. Complications develop at a young age, leading, in many cases, to blindness, kidney failure and severe neuropathy. Diabetes Voice Volume 46 June Number 2/2001 7

3 In contrast, people with diabetes in developed countries have access to all equipment and supplies required to manage their diabetes well. Specialist medical attention, diabetes education, dietetics and social work services are all provided. Most children achieve good control, lead a normal lifestyle, and are in a good state of well-being. The risk of complications at a young age is very low. Sustainable Insulin Supply Needed for Developing Countries The previous issue of Diabetes Voice focused on the problem of providing emergency supplies of insulin to victims of disaster. In addition, a sustainable programme for supplying insulin for people with diabetes in developing countries is sorely needed. It is the chronic shortage of insulin that still poses the greatest problem. According to Dr Jean-Claude Mbanya, Consultant Physician at the Yaoundé University Hospital in Cameroon, IDF Vice President and Chair of the IDF Task Force on Insulin,... the real problem lies in the widespread, chronic shortage of insulin that poses a serious threat to the developing countries of the world. International economics still determines who should live or die, while the world watches on. (Diabetes Voice, 4/1999, vol 44, 22-25). Dr Mbanya also stated, Apart from problems in supply and distribution, people with diabetes in developing countries [...] simply cannot afford the high cost of insulin, syringes and needles. Insulin distribution programmes already exist. Australia s Insulin For Life programme, for example, is of considerable benefit, but can only pass on limited supplies. The IDF South and Central American Region has done much in cooperation with Rotary International, and other countries have shown interest in establishing similar projects. Western Pacific Initiates Steps The Life for a Child Programme began when the IDF Western Pacific Region (WPR) embarked on creating a sustainable sponsorship programme aimed at supporting Jacklyne is now in good control, confidently administering her own injections, performing blood glucose monitoring at home and feeling much healthier. diabetes centres in developing countries. Ms María L de Alva, former IDF President, proposed this concept to the WPR Council meeting in Sydney, Australia, in October 1999, when it was unanimously endorsed. The IDF Consultative Section of Childhood and Adolescent Diabetes, chaired by Professor Martin Silink, was asked to develop the programme. Outline of Programme The Consultative Section on Childhood and Adolescent Diabetes proposed that the best way to administer support through sponsorship would be to get a number of sponsoring individuals or families together to support a diabetes care centre in a developing country. One of the benefits of the sponsorship programme would be to 8 Diabetes Voice Volume 46 June Number 2/2001

4 provide education and technical support for health professionals. It was proposed that not only funds would be provided to the centre, but also supplies such as insulin and syringes as well as blood glucose and HbA1c monitoring tools. The programme would be implemented by the most well-established nongovernmental organization in the recipient country. The national diabetes association would also be required to assist. Health outcomes of the children and general progress at the centre would be monitored with the assistance of the International Society for Paediatric and Adolescent Diabetes (ISPAD). Best Practice Financial Guidelines would be followed, and the programme regularly evaluated and audited. It was hoped that this model would prove selfsustainable and applicable for other countries. The non-governmental humanitarian development organization, HOPE worldwide, added its assistance in January last year, when, thanks to added support from industry partners and Diabetes Australia, the programme was developed and implemented. Funds were approved and sent to three pilot countries, Papua New Guinea, Fiji and the Philippines, at the beginning of this year. Pilot Programme now Implemented in Three Countries Fiji and Papua New Guinea were chosen because they both show increasing numbers of children with type 1 diabetes. Management of these children has been difficult until now, with some children perishing and many others in very poor The school in Jacklyne s village Diabetes Voice Volume 46 June Number 2/2001 9

5 Jacklyne was thin and unwell, with visual disturbances and overall in a very perilous situation. control and developing complications. There is a free basic health system in each country, but resources are very scarce. In Papua New Guinea, insulin is provided by the government, but glucometers and testing strips have to be privately purchased, at premium prices. In Fiji, testing strips are only available intermittently in limited quantities in some hospitals. Families need to buy their own needles and syringes. There are only a couple of diabetes educators in each country, and they do not have paediatric training. Papua New Guinea does not have any dietitians at all working in hospitals. Both countries have high rates of type 2 in young adults, and it is likely a number of children and adolescents have unrecognized type 2 diabetes. These children are in urgent need of diagnosis and management. The capital of the Philippines, Manila, has 12 million people. There are about 120 children with diabetes in Metro Manila and surrounding districts. The three centres looking after these children provide expert teaching but are generally unable to supply insulin, glucometers, testing strips, urine strips, HbA1c tests, or syringes and needles. Families need to purchase these and limited support is available from a few charities. A recent study of children from poor families showed that 40 percent of children were frequently missing insulin injections due to financial difficulties, and that none were having regular HbA1c tests. How You Can Help To become a sponsor, you can access a sponsorship form on the IDF website or the programme coordinator, Ms Anne Rogers, on anner@diabetesnsw.com.au for one. You can also fill out and fax the form on the following pages to +61 (0) The cost is US$1 per day ($365 per year). Payments can be made by credit card monthly, quarterly or annually. You will receive regular updates on the progress of the centre you are supporting, with photographs and stories on selected children. Dr Graham Ogle is the Programme Manager of Life for a Child and Regional Director (South Pacific), HOPE worldwide. Professor Martin Silink is Director of the Ray Williams Institute at the Children s Hospital, Westmead, Australia, Chair of the IDF Consultative Group on Childhood and Adolescent Diabetes, and IDF Vice President. 10 Diabetes Voice Volume 46 June Number 2/2001

6 Diabetes Voice Volume 46 June Number 2/