WHERE WE WORK: PHILIPPINES
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CLAN’s partnerships in the Philippines first started in 2005, when we were invited to collaborate with families and health professionals and work towards the progressive realisation of the rights of all children who are living with CAH.
General Information on CAH in The Philippines
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.
In 2005 life was very hard for families living with CAH in the Philippines. Despite the fact that Newborn Screening for CAH had been available in the country since the enactment of the Newborn Screening Act in 2004, neither of the two drugs essential for a healthy life with CAH were locally available. This was 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 was able to supply early humanitarian aid to help meet the needs of all children living with CAH for several years, until a more sustainable, long-term solution was achieved in the form of registration of hydrocortisone tablets.
Achievements of CAHSAPI
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 with and 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:
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.
In 2005 life was very hard for families living with CAH in the Philippines. Despite the fact that Newborn Screening for CAH had been available in the country since the enactment of the Newborn Screening Act in 2004, neither of the two drugs essential for a healthy life with CAH were locally available. This was 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 was able to supply early humanitarian aid to help meet the needs of all children living with CAH for several years, until a more sustainable, long-term solution was achieved in the form of registration of hydrocortisone tablets.
Achievements of CAHSAPI
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 with and 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 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 an online social media platform to support ongoing engagement and communication amongst CAHSAPI members (Facebook)
- development of a CAH register
- surveys of families to understand the key needs of families
- identification of a local manufacturer willing to manufacture hydrocortisone tablets locally
Congenital Adrenal Hyperplasia
Osteogenesis Imperfecta
