History of CLAN
In 2004 Royal Children's Hospital International (RCHI, Melbourne Australia), the Australian CAH Support Group and CARES Foundation published some articles outlining the desperate situation facing many children living with Congenital Adrenal Hyperplasia (CAH) in Vietnam.
Treated appropriately, CAH need be not much more than a "nuisance" illness. Tablets taken three times a day - extra at times of illness - combined with regular medical reviews should ensure that CAH is well controlled. For the majority of people living with CAH in Australia and other high-income countries, they can look forward to a normal life expectancy and enjoy a terrific quality of life.
Treated inappropriately however, CAH has devastating - and potentially fatal - consequences. Prolonged exposure to low doses has a severely adverse impact on quality of life, and patients who receive no medications will simply die.
The situation in Vietnam was intolerable. Unaffordable medications (at times one bottle of tablets would cost a family 16 bags of rice on the balck market) meant patients were sometimes only getting tablets every few days. Several patients were dying from CAH every year - rates unheard of in more developed nations - and children were experiencing entirely preventable disability and morbidity on a grand scale.
The realisation of the stark reality endured by these Vietnamese families prompted the parents of one Australian child with CAH to learn more, with the ultimate dream of uniting all CAH families of the world to work together to see what could be done to help less fortunate families enjoy a better life. CLAN (initially CAH Living As Neighbours) was born. CLAN moved firstly to improve the situation for families living with CAH in Northern Vietnam by providing free access to hydrocortisone and fludrocortisone tablets for all patients. This swift action was only possible thanks to:
- the close working relationship between Royal Children's Hospital International (RCHI) and the National Hospital of Paediatrics (NHP) in Hanoi, and
- the generosity of Alphapharm Pharmaceuticals (Hysone) and Bristol-Myers Squibb (Florinef). When approached, both companies generously agreed to donate stock to CLAN's cause. Combined with some basic fundraising efforts, CLAN secured enough medication to treat all children living with CAH in Vietnam at that time for the next three years - and in the interim time-frame CLAN committed to exploring longer-term, more sustainable solutions.
Early successes in Vietnam led to requests for assistance from health professionals and families to help children with CAH in the Philippines (2005), Indonesia (2006) and later Pakistan (2007). In 2008, an application to include fludrocortisone and hydrocortisone tablets (essential for management of CAH) within the World helath Organisation's Essential Medicine List for Children (EMLc) was successfully submitted by CLAN in partnership with colleagues at the National Institute of Child Health (NICH) in Pakistan and the Royal Children's Hospital (RCH) Melbourne, Australia. The next challenge still remains - to translate this achievement into a practical reality - and relief - for children living around the world with CAH.
Over time, it became clear that CLAN could apply its framework of action (the 5 pillars) with equal success to other chronic medical condtions of childhood. In 2007 CLAN was invited to help children with Diabetes in Vietnam, and in 2008 to help children with Autism (also in Vietnam). A subtle change in name was made to reflect this new broader field of work - CLAN (Caring & Living As Neighbours) was born. Wonderful partnerships are now developing with Life for a Child (International Diabetes Federation), the International Insulin Foundation (IIF), Children's Hospital Westmead (CHW - in Sydney, Australia), Aspect Australia and others.
CLAN would like to see global equity for children living in resource poor countries with any sort of chronic health conditions (not just CAH, Diabetes and Autism), and we are committed to working in partnership with like-minded individuals, communities, professional groups and organisations around the world, with the belief that anything is possible.
The voyage of discovery is not in seeking new landscapes but in having new eyes.