Thank-you Asia Society!
Sincere thanks to Asia Society for selecting CLAN (Caring & Living As Neighbours) as a finalist for its prestigious 2010 Public Service Award. CLAN collaborated with local partners in Indonesia to apply for this Award, with the goal of securing funding to expand our joint efforts in Indonesia to help children with endocrine conditions such as Diabetes, CAH and hypothyroidism - we are keeping our fingers crossed!
Please see below a letter written by Dr Rara Purbasari about life in Indonesia for children with chronic health conditions...
CHILDREN WITH CHRONIC CONDITIONS IN INDONESIA
By Rara Purbasari, M.D.,
Dr Cipto Mangunkusumo Hospital, Jakarta, Indonesia
(A Collaborative Partner of Caring and Living as Neighbors, Inc—CLAN)
Chronic conditions in children are an important global issue. The incidence of chronic diseases is increasing in children not only in developed countries but also in developing countries such as Indonesia. The burden of chronic diseases is greater in developing countries since they face a huge burden from communicable diseases as well. Children with chronic conditions such as diabetes and congenital adrenal hyperplasia (CAH) in resource poor countries become less of a priority due to the heavy burden of communicable diseases in these countries.
In Indonesia, the government’s primary concerns are basic health needs such as malnutrition, maternal and neonatal mortality, and communicable diseases. The government sets health policies according to Indonesian national data. Since all national surveys from 1900’s until the recent 2010 data have not focused on chronic conditions in children, there is no epidemiologic data showing the burden of the chronic diseases in children. Without this data, it is difficult to improve the policies supporting the children with these conditions.
A 1-1/2 year ago, our hospital began collecting information about pediatric endocrine diseases in Indonesia. Part of the program included educating pediatricians about the signs and symptoms of common endocrine diseases. The data collected was we unexpected, especially regarding Type 1 Diabetes (T1DM) in Indonesia. At the beginning of the project, we had 100 patients with T1DM registered in the country. By the end of the year and ½, 507 children with T1DM (42% male, 58% female) had been diagnosed. Forty percent of them (204 patients) were diagnosed with diabetic ketoacidosis (DKA), 6,7% among them have history of recurrent DKA (more than once) along their duration of illness, and 2,6% died because of it. The situation with CAH is comparable to diabetes. At the beginning of project, we knew of 40 patients. Currently, we have 116 patients enrolled (15% male; 85% female) all over Indonesia. Many of our CAH children were diagnosed late, well past their neonatal period (92 patients; 79,3%). Twenty five percent of them presented with adrenal crises and 6 of those died due to complications. There is a lack of awareness from all stakeholders (parents, health care providers, etc) about these diseases. We believe that many, if not most, Indonesian children with diabetes and CAH simply die before diagnosis.
Families with children having chronic conditions face a tremendous burden in their daily lives due to the financial cost of caring for these children, but also from the psychosocial toll. In Indonesia, lack of resources is the biggest challenge we face. These children have special, life-long needs (daily medication, routine physicians visits for monitoring and laboratory examinations, hospitalization or surgery). The funding needed for their healthcare management is expensive. Many Indonesian people struggle with poverty. Without a good health insurance system in Indonesia, the parents of the sick children must bear the whole financial burden by themselves. Sometimes parents adjust their treatment to reduce the cost by reducing the amount of drugs consumed; reducing the frequency for monitoring, or even not manage their child condition at all. Even though some people have health insurance (a very limited number in Indonesia), many barriers still prevent these children from getting good medical management. Many private insurance plans do not cover the cost for chronic disease, especially when they find out that the disease is genetic. Even when insurance covers the health care needs, lack of availability of some drugs or laboratory testing inside Indonesia (such as hydrocortisone tablets, 17-hydroxy-progesterone examination, glucagon, glucose tablets, etc) makes the management of these children sub-optimal. Some CAH or diabetic children, who do not come for monitoring for years, have been brought back with severe complications (DKA or adrenal crises).
Another big issue that Indonesian families and children with chronic conditions face is psychosocial adjustment. The children have to adjust their routines to adapt to their disease. They may not be able to enjoy their daily life as much as their friends the same age. They must take regular medications, eat a restricted meal plan, adjust activities, or manage insulin injection and glucose monitoring in public places. They may have to leave school frequently for physician visits, laboratory examinations, or even hospitalization. Physical appearances may be impacted by these diseases as well. All of these stressors take their toll on these children. Sometimes these children become so emotionally fragile, that they tend to get angry easily, become too dependent on their parents, or abandon their required treatment. Another challenge these children have to face is their environment. With lack of knowledge in their community about their disease, the environment tends to be too protective to these children, and isolation and discrimination are common problems. Psychosocial stresses also affect the parents of children with chronic conditions. The stress of financial costs is increases with their children’s psychological problems.
Indonesia also has problems with the distribution of health resources. Healthcare providers and facilities are not evenly distributed between rural and urban areas. In remote areas, often there are no health care providers, no source of medication, and no health care facilities, and children with CAH or T1DM are at a higher risk of death. The table below shows current distribution of pediatricians, ped-endo and patients between provinces in Indonesia.
|Province||Pediatricians||Pediatric Endocrinologist||Type 1 DM patients||CAH patients|
In order to increase health care management and quality of life for our children with chronic conditions in Indonesia, we have been collaborating with physicians and institutions (locally and internationally) such as Indonesian Families of Diabetic Children and Adolescent (IKADAR), Community of Indonesian Families with CAH children, Caring and Living as Neighbours (CLAN), and World Diabetes Foundation (WDF). Currently, we are in the midst of a project with WDF called “Integrative and Comprehensive Management of Type 1 DM in Indonesia”. Part of the activities of the project are family training and education about Type 1 DM, a diabetes walk for fundraising, diabetes camp, pediatrician training on type 1 DM and ketoacidosis, and also diabetic educator training for nurses. We are also collaborating with CLAN and ALPHAPHARM from Australia. They donated two years’ supplies of hydrocortisone and fludrocortisone (vital drugs for CAH in children which not available in Indonesia) and other supplies for Indonesian CAH patients. CAH Parents began the effort of arranging family communities, obtaining collaboration with international organizations and managing drugs supply for all our CAH patients in Indonesia. In June 2007, some of the CAH parents in Jakarta met to discuss how to deal with some of their community’s most pressing needs, such a access to medications. Prior to this time, Indonesian parents could only obtain their children’s medications from abroad by visiting physicians in Singapore or Malaysia (or wherever they could afford go). These parents got together and purchased medications in bulk abroad and distributed them to CAH patients. After the involvement of CLAN, they did not have to go abroad anymore since CLAN has sent the medications periodically according to our needs. We have also been negotiating with a local pharmacy (government pharmacy company) to be able to produce the medications for CAH patients in Indonesia. We believe that in approximately 1 year, hydrocortisone and fludrocortisone will be available in Indonesia. Community support and collaboration has proven to be a powerful tool to encourage healthcare providers and the government to pay more attention to our children needs. We hope that developing additional collaborations and deepening our involvement with existing partners will continue to improve the quality of life and health for children with chronic conditions in Indonesia.
Caring and Living As Neighbors (CLAN) is an Australian-based, not-for-profit, non-governmental organization. CLAN is dedicated to the dream that all children living with chronic health conditions in resource-poor countries of the world will enjoy a quality of life on par with that of their neighbors in wealthier countries. For more information about CLAN and the plight of children with chronic conditions in resource poor countries in Asia, please visit www.clanchildhealth.org