Since 2005 CLAN has had the privilege of collaborating with families and health professionals in the Philippines, working towards the progressive realisation of the rights of all children who are living with CAH in this country. CLAN was proud to attend the Inaugural meeting of CAHSAPI (the Filipino CAH Support Group) at the Philippines General Hospital (PGH) on 11th December 2005.
General Information on CAH in The Philippines
Life has been hard for families living with CAH in the Philippines. Despite the fact that Newborn Screening for CAH has been available in this country since the enactment of the Newborn Screening Act in 2004, neither of the two drugs essential for a healthy life with CAH are locally available. This is despite both drugs being listed on the World Health Organisation's Essential Medicines List for Children (EMLc since 2008) and extensive advocacy efforts by numerous stakeholders.
Thanks to generous support from Alphapharm Australia Pty Ltd, CLAN has been working hard to supply as much humanitarian aid as possible, but it is clearly not a sustainable, long-term solution, so our efforts have also focused on advocacy at government and WHO level. Whilst BFAD (Bureau of Food & Drugs) has given CLAN permission to donate the drugs (with hefty Customs duties) this has been a costly and consuming process for all involved, with hefty Customs duties, delays in the importation process and the need for official Filipino Embassy documentation in Australia prior to export. This is not sustainable!!
What's been achieved so far?
On a positive note, there have been many exciting developments underway in the Philippines for CAH families, and this is largely thanks to the Philippines Society of Pediatric Metabolism and Endocrinology (PSPME) and staff at the Philippines General Hospital (PGH) who have worked tirelessly for the CAHSAPI community. In particular, the pediatric endocrinologists at PGH, Manila have been instrumental in the changes achieved so far.
Key achievements to date by all stakeholders include:
- improved (but still inadequate) access to the most affordable sources of quality hydrocortisone and fludrocortisone for all patients with CAH in the Philippines
- regular CAHSAPI meetings, with educational talks in the subjects of treatment, surgery and psychology (amongst others), and good opportunities for families to support one another and network
- translation of key educational resources on CAH into Tagalog (a local dialect)
- attendance by paediatric endocrinology fellows at NBS and CAH conferences internationally
- development of a CAH register
- surveys of families to understand the key needs of families
- identification of a local manufacturer who may be willing to manufacture hydrocortisone tablets locally.
has never been greater. CLAN will continue to actively advocate for an outcome on this front, and will not rest until an outcome is achieved for the families.
Resources on Diabetes for Children in the Philippines
Please visit Life for a Child's You Tube site to see Professor Bumblebee in Tagalog (an animated cartoon explaining Diabetes to children!).