Connecting with CAHSAPI in the Philippines - Learning from youth living with CAH

CAHSAPI 2015

In June 2015, CLAN was very grateful for the opportunity to visit Philippines General Hospital (PGH) in Manila, and meet with long-term friends, colleagues and supporters of CAHSAPI, the Congenital Adrenal Hyperplasia (CAH) community in the Philippines. PGH is the largest charity government hospital in the Philippines, and CLAN has been proud to collaborate with Dr Sioksoan Chan Cua and CAHSAPI since 2005.

CAHSAPI Youth Meeting

An informal youth gathering was held on Friday 19 June in a private room of the hospital, and 5 young people who are living with CAH (1 Australian and 4 Filipino) - together with their families and some of the wonderful and caring health professionals at PGH - came together to talk about life with CAH and compare experiences between Australia and the Philippines. An additional Filipino young person was unable to attend in person because of school commitments, but was represented by their parent in discussions. The age of the youth participating ranged from 9 to 26 years of age, with two boys and 4 girls represented in total.

  

What is working well for those with CAH in the Philippines?

The achievements of the Philippines in terms of implementing newborn screening (NBS) for CAH nationwide was acknowledged in discussions amongst families and doctors, with one of the young people attending the meeting actually the first baby diagnosed with CAH through NBS in the Philippines when it first started 19 years ago! Australia’s complete failure to implement NBS for CAH was met with disbelief by all present.

All attending expressed their profound gratitude to the staff of PGH for their care and commitment to children and young people living with CAH in the Philippines – particularly their care for the poorer families. The annual CAHSAPI Lay Forums, held in November each year and sponsored by the NBS program, are an excellent opportunity to provide more detailed education for newly diagnosed CAH families from across the Philippines, and were generally regarded as a great success for the Filipino CAH community as a whole. 

All young people attending were leading active lives and enjoying school and or university studies. Sport was identified as a positive in most peoples’ lives, helping them stay fit and active and healthy. Facebook is an effective means of communication for members of the CAHSAPI Community, and helps everyone stay connected, share Florinef and other information.

 

Challenges and burdens for those living with CAH in the Philippines

As well as achievements and challenges, participants shared their priorities for future action so that young people living with CAH in the Philippines might enjoy the highest quality of life possible.

Access to Florinef (fludrocortisones) was raised as one of the greatest challenges and burdens for CAH families in the Philippines. Currently Florinef is not available at PGH and families ask relatives and doctors who are either living overseas or travelling overseas to purchase tablets for them and bring them back to the Philippines. This was identified as a great burden for families and a key priority for change.

Specific challenges for girls living with CAH in the Philippines were discussed at length, and this was also identified as a key area for future attention, focus and support. Other challenges, including weight gain and longer-term complications – notably short stature – were explored. Having a safe environment to share honestly with one another allowed for very powerful discussions, and CLAN is keen to keep learning all that we can.

Families were also keen to continue learning all they could about CAH, and questions around the genetics of CAH and the risk of future children having CAH were amongst some of those covered in conversations. Families showed great interest in reading the Hsu & Rivkees book “A Parent’s Guide to CAH” in more detail. Given one family spoke very limited English, the benefit of having this book translated into Tagalog was very clear to CLAN. Links to CAHPepTalk (another educational resource that is now available to families online) were also shared with families, and hopes that this might also be made available in Tagalog in the future were raised.

Finally, the shortage of paediatric endocrinologists in the Philippines was raised on a number of occasions. With only 22 fully qualified paediatric endocrinologists available to a population of 98 million people across an archipelago of 7,000 islands, there is a severe shortage of qualified doctors available to do the work needed. In this regard, the importance of empowering families – and CAHSAPI more generally – to ensure children with CAH living with CAH enjoy the highest quality of life possible was very clear.

 

Comparisons between Australian and the Philippines

Australia’s failure to implement NBS for CAH was perhaps the greatest source of amazement for the Filipino doctors and families present. Without doubt, this must remain an area of focus for the Australian CAH Community and its supporters moving forward.

Access to medicine probably emerged as the other key point of differentiation, and in this regard Australian families benefited most, not only in terms of access to Florinef but also the fact that Australian families are encouraged and empowered to have hydrocortisone injection kits at home for emergency use. The importance of empowering young people with CAH to learn how to manage their own sick day management - and even give themselves an injection if needed if travelling alone later in life - was discussed. 

 

Future actions for CAHSAPI

At the end of the meeting, CLAN was pleased to make several presentations to CAHSAPI and the doctors who support CAHSAPI so ably:

- with thanks to Irene Mitchelhill (CAH Nurse Specialist at Sydney Children’s Hospital) some sample hydrocortisone injection kits as used in Australia – together with instructions on how to inject Solu-Cortef (which is widely available in the Philippines) was made to the doctors to consider sharing with families

- a cash donation of USD$250 was made to CAHSAPI President, Mr Alain Yap, with a view to CAHSAPI and the doctors working together on a project identified by CAHSAPI as a key priority for action. CLAN has left the choice of the project open to CAHSAPI, but has just requested a brief report on the outcomes of the project.

  

In closing, CLAN also committed to continue to explore options around access to Florinef, and further ways to empower young people in CAHSAPI in future. A lovely meal of traditional Filipino food – and Australian snacks (Tim Tams, Minties and Caramello Koalas!) was shared amongst all, and a few Australiana gifts given to participants and families before everyone parted company to return to school, work and other commitments.

CLAN would like to sincerely thank CAHSAPI and PGH for the terrific opportunity to connect, and look forward to ongoing collaborations in future.

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