Inspired by KAHAKI in Jakarta!
It was a genuine privilege today to meet with members of the Executive of KAHAKI (the CAH Club of Indonesia, based in Jakarta). CLAN has had the privilege of working with the CAH community of Indonesia since around 2006 - first in Surabaya and then Jakarta - and we are just thrilled with how strong the CAH Community of Indonesia has become. Children who are newly diagnosed with CAH in Indonesia are routinely introduced to KAHAKI, and there are now around 150 families registered. Families communicate with one another via mobile phone, texting and email in the main, also coming together for gatherings as able.
Families in Jakarta today emphasised how much has changed over the last 8 years, and they are very grateful to Dr Aman Pulungan and the other paediatric endocrinologists of Jakarta who have supported them so strongly over the years. Access to medicine remains a major challenge, although discussions with the Ministry of Health and pharmaceutical industry are progressing in a very positive and promising way. Once affordable access to medicine is achieve, families also look forward to changes in the national health insurance system that will mean they can get support to care for their children - currently in Indonesia health insurance does not cover congenital health conditions at all... This leaves families of children with Congenital Adrenal Hyperplasia (CAH) in a difficult position as you can imagine!
Other goals lie on the horizon as well... Families are keen to see Newborn Screening for CAH implemented in Indonesia; an ongoing focus on education that will see doctors across the nation alert to the signs and symptoms of CAH so that children do not go undiagnosed; and ongoing development of their fantastic new website - www.yayasankahaki.org - is another key priority!
CLAN sincerely congratulates the CAH community and their wonderful and caring health professionals on all that has been achieved for children who are living with this chronic health condition in Indonesia. It is clear much has changed for the better over the years, and although there is still much to do, there is no doubt the families feel stronger and more optimistic about the future than they ever have before...
Congratulations to everyone involved! CLAN would especially like to thank Alphapharm Pty Ltd Australia (a Mylan Company) for their unwavering support of KAHAKI since CLAN's very first efforts to support the children... Your compassion and generosity has meant the world and had a huge impact on many lives. Thank-you for doing so much good for so many children here in Indonesia!