History of CLAN Indonesia
Thanks to an email introduction from the CARES Foundation in September 2006, CLAN was able to help caring health professionals in East Java secure emergency supplies of hydrocortisone and fludrocortisone for their small group of CAH patients. Neither medication was registered for sale in Indonesia, so access was variable at best - and always prohibitively expensive.
Following CLAN's fantastic partnership with Alphapharm Australia Pty Ltd helping children in Vietnam, we were keen to explore another opportunity to collaborate, and were delighted when Alphapharm generously agreed to donate a two year supply of Hysone tabletes (hydrocortisone) for every child with CAH in Indonesia (approximately 200 children), whilst local health professionals explore local, long-term supply systems.
CLAN is committed to working with CAH families and their health professionals over the longer term, enacting the 5 Pillars of CLAN - focusing also on education, optimal medical management, support group networks and reducing poverty. At the 2006 APPES conference in Thailand, CLAN was very pleased to meet with several Paediatric Endocrinologists from Jakarta, and will continue to build on these relationships in the future.
Until recently, there has been no information available to families on CAH in Bahasa language, but this situation is rapidly changing! A number of small documents are now available in local language, and doctors in Jakarta have completed translation of Prof Garry Warne's booklet "Your Child With Congenital Adrenal Hyperplasia".
On June 13th, 2007 IKAHAK (Ikatan Keluarga Hiperplasia Adrenal Kongenital), the first CAH Family Club in Indonesia was established. Six families attended the inaugural meeting at Dr Soetomo Hospital in Surabaya. IKAHAK welcomes contact from all CAH families of Indonesia. Their email address is firstname.lastname@example.org . CLAN has been partnering with IKAHAK on an enterprise development program, helping families explore business ideas that will help them to one day achieve financial independence. CLAN is grateful to Grameen Foundation Australia for the encouragement, wisdom and guidance in this new initiative to help CAH families.
In 2008 a national CAH community was established in Jakarta, under the leadership of Dr Aman Pulungan (Chair of the National Indonesian Society of Pediatric Endocrinology (ISPE), a chapter of the Indonesian Pediatric Society). KAHAKI have been working with ISPE and CLAN to establish more secure supply chains of essential medications, which now supply life-saving drugs to all children with CAH throughout Indonesia.
The future for CAH families in Indonesia is looking brighter all the time, and sincere thanks must go to the fantastic Indonesian doctors around the country who are working so hard to effect change, and the courageous families who strive above and beyond to help their children achieve the highest quality of life possible.