News CLIP from Karachi! Pakistan's CAH Club has its 2nd Annual Meeting at NICH

News CLIP from Karachi! Pakistan's CAH Club has its 2nd Annual Meeting at NICH

Karachi Pakistan CAH Club Meeting Report (Saturday 22 November 20140, written by Cath Cole, Vice President of CLAN)

What an amazing meeting this was, with families arriving individually but leaving as one, connected by their shared experience and united as a CAH Community with a vision for the future... Congratulations to CLIP (CAH Living In Pakistan) on an inspirational event.

A New Name - CLIP (CAH Living In Pakistan)!

CLIP was the name unanimously agreed upon by members of Karachi's CAH Club at today's 2nd ever CAH Club meeting at the National Institute of Child Health (NICH). Sponsored by Prof Jamal Raza (Pediatric Endocrinologist and Director of NICH) and hosted by Dr Yasir Khan, CLAN representatives (Dr Kate Armstrong, President and Founder and Ms Cath Cole, Vice President) were honored to attend as invited guests from Australia. Having partnered with NICH since 2007, this was the first time representatives of CLAN had had the opportunity to visit Karachi in person, so it was an emotional and exciting day on many levels. 

The meeting commenced when Dr Khan welcomed the families, thanking them for coming to NICH’s second official CAH Club meeting. The first CAH Club meeting in Pakistan had been held in September 2013 with some trepidation... for many years health professionals had doubted families’ willingness to come together in public and meet one another face-to-face given the high levels of stigma and shame associated with CAH in Pakistan. The 2013 meeting had been a huge success however, and reinforced the value of a strong CAH Club at NICH.

Today’s meeting had several specific objectives: to continue connecting families for education, support and encouragement; to consult with families to learn more about their priorities for future action (around 18 families were invited and engaged in detailed consultation); and collaboratively discern most appropriate next steps so that families and staff alike are empowered to engage in ongoing community development to strengthen the CAH Club of NICH into the future. The gathering was held in a large meeting room at NICH, and around 60 people attended (representing around 16 families in total). Many children and young people were present, and those living with CAH ranged in age from infancy to young adulthood. 
 

CLAN Shares with CLIP

Dr Kate Armstrong was invited to speak on behalf of CLAN, and shared two presentations with the families (with special thanks to Dr Yasir Khan for his invaluable efforts translating all discussions on the day between Urdu and English!), aided by photographs that were shown via powerpoint.

The first presentation was an interactive session focused on community development, and placed CLIP within the broader context of the international CAH Community, and beyond that the global Non-Communicable Disease (NCD) discourse. Kate began at a personal level, sharing with CLIP members her own family’s personal journey with CAH, and then expanded the story to explain how CLAN came into being out of a growing awareness of the global inequity facing CAH communities in the Asia Pacific region. Families were also  introduced to CLAN’s five Pillars (which emerged following consultation with CAH families in Vietnam in 2005), and when asked for their feedback, the extent to which the pillars resonated with the families in Karachi was absolutely striking. A vibrant discussion around the 5 Pillars confirmed that this group of families in Pakistan experiences many of the same issues faced by the thousands of families CLAN has now worked with in Vietnam, Indonesia, the Philippines and other low- and middle-income countries around the world. As the pillars were shared with families one mother very quickly and emphatically stated “this is what we want!” and further in-depth discussions confirmed universal agreement that Pillar One (Access to Medicine and Equipment – including emergency hydrocortisone injection kits) remains their number one key priority. One mother said, “we cannot afford the medicine” and another added “for our family, even though we can afford it, we just can’t get the medicine - availability is the issue and it is expensive when we can get it”. The cost of investigations was also raised, with families stressed by their cost and limited availability. Even though NICH does give a discount of up to 15% on investigation costs, there is still a lot of time “invested” in paperwork and formalities for this financial benefit to be attained.

In discussing Pillar 2 (Education, Research and Advocacy) a key message that CLAN shared with families was the importance of community. Through the power of connecting with others internationally, CAH families in Pakistan have the opportunity to raise their voices at a global level through broader discussions the world is now having around children and Non-Communicable Diseases (NCDs). CLAN shared the fact that the United Nations recently celebrated 25 years of the Rights of the Child, and that organisations such as UNICEF and the World Health Organisation (WHO) are increasingly open to consider children and young people in the context of NCDs. Despite CAH being a lesser-known NCD, the same principles of access and treatment apply as much to CAH as they do to other conditions such as Diabetes, Cancer, Rheumatic Heart Disease and Asthma.

To this end, Dr Armstrong also emphasised to families the importance of advocacy, and assured CLIP that they have an incredibly powerful advocate on their side in the form of NICH Director Prof Jamal Raza. Prof Raza recently presented at the 65th Annual United Nations DPI/NGO Conference in New York (August 2014) where he spoke passionately about CLIP and child health in Pakistan. CLAN also shared many of the achievements made by families and health professionals in Vietnam for the CAH Community there, with empowerment of families and the fantastic efforts of caring health professionals resulting in striking reductions in mortality and improvements in quality of life. Likewise, the inspirational efforts of CAHSAPI (in the Philippines) and KAHAKI (in Indonesia) were of great interest to CLIP members. Dr Armstrong encouraged CLIP to connect with global and grass roots groups internationally to help them achieve the goals they will set for themselves in future meetings.  Although it can be long and difficult achieving the five Pillars of CLAN, the achievements of other CAH communities internationally demonstrates that change is possible. The importance of sustainability was discussed in some detail, and Dr Armstrong suggested to families that once CLIP has their executive leadership in place, they might consider employing a program officer to help organize their activities and protect CLIP's volunteer-based executive from exhaustion and burn out.

 

The second presentation Dr Armstrong shared was more of a personal reflection on her family’s six rules for a happy and healthy life with CAH. The six rules are:

1)   Always take the medicine prescribed by your doctor: take it on time and always remember to take the medicine with you wherever you go

2)   See your doctor regularly (every 3 months for babies, every 6 months as children grow older) for check-ups, blood tests and monitoring of CAH

3)   Learn to recognize the symptoms and triggers for sick days – and ask others if you have any questions

4)   Have a “sick day plan” so you know exactly what to do when your child becomes acutely sick and how to manage it

5)   Know how to manage an adrenal crisis and how to give an emergency  injection of hydrocortisone

6)   Really believe your child should be living a normal life and help them do all that other children their age are doing (especially school and sport) - and do all you can to be involved in the life of CLIP.

 

Throughout her talk, Dr Armstrong asked families about their own experiences with sick day management and adrenal crisis management and gave some humorous demonstrations of her own experiences of symtoms and signs of missed doses; the trials of sick day management; and the challenges of ensuring children with CAH have enough medication to help them cope with stressors in their life. Temper tantrums and bad moods are a common experience of CAH families in Pakistan, and everyone was nodding and laughing at shared frustrations, with even the children and young people joining in. Issues of stigma attached to ‘taking steroids’ were also raised, and families were reassured that this issue was not relevant to CAH, where children are taking only replacement doses of cortisol that their bodies need to survive, given their adrenal glands can not produce what is necessary for healthy living. Dr Armstrong’s presentation reiterated the need to ensure medication was taken on time, and the need to take more not less when tempers flare during times of stress and when a child has a sick day. 

The vital importance of immediate access to hydrocortisone in both tablet and injectable form was shared with families, and Dr Armstrong demonstrated how to give a hydrocortisone injection using an emergency Solu-Cortef injection kit that is made by Pfizer and available to all families in Australia for use at home. Families in Pakistan do not yet have hydrocortisone injection kits at home, so samples were left with CLIP to research, and consider options for future access and distribution to all families. Other aids such as the CAH book “Caring for your Child with CAH: A Parent’s Guide” (authored by Dr Scott Rivkees and Ms CY Hsu) Irene Mitchelhill’s CAHPePTalk DVD and website details were also shared with CLIP to support ongoing education and empowerment.

 

Question & Answer Time with CLIP 

The floor was open at all times for questions, but a dedicated question and answer session was a key feature of the day. Families had many queries and comments, and Dr Yasir facilitated the session admirably, ensuring a very interactive period was enjoyed by all. Parents asked many questions ranging from specific queries around day-to-day management and care of their child to detailed enquiries around genetic inheritance and risk. Concerns such as the social isolation children experience because people don’t understand CAH were raised, as were the challenges of finding doctors in Pakistan who know what CAH is and how to treat it. The value of communicating with others that CAH is not contagious was discussed, and issues of stigma and discrimination were common to all, with many families anxious about the ramifications of publicly disclosing their child has CAH. Families shared an overwhelming desire for the broader community to recognise their children as “normal” and advocacy and education campaigns that might help with this were explored. Dr Yasir encouraged families to learn all they can about CAH and keep gaining knowledge about the condition as this then arms them with the knowledge and power to educate others.

Strengthening CLIP as a Community

Towards the close of the meeting discussions turned to CLIP development and strategic planning for the future, with many families quick to raise their hand to join an Executive Committee for the newly formed and named CLIP Club. Immediate priorities were discussed in general terms, with a view to more formal clarification of next steps to be agreed at CLIP's first executive meeting in December.

CLIP’s challenges when they next meet will be to refine early goals and targets, and based on conversations so far it seems these will focus on access to medicine; empowering families so as to minimise unnecessary outpatients visits; communicating messages of awareness through mobile phones (all families have these) and optimising use of various forms of social media (in particular Facebook).  
 

Confronting Issues of Access

The challenges for all poorer families caring for sick children in Karachi were driven home to CLAN during a brief tour of the NICH they were given prior to the CAH Club meeting. Pressing issues of access were immediately apparent: even early on a Saturday morning the busy outpatients department was in full swing. NICH manages around 150 – 200 patients a day in the surgical outpatients rooms and 350 – 400 in the general paediatric medical outpatients rooms.  The outpatients staff were hard at work treating as many patients as possible while families jostled, queued and waited in line patiently for their turn.  CLAN learned there can be up to three children in a bed at a time due to demand for inpatient care and lack of facilities (the hospital has around 475 inpatient beds but daily occupancy rates far exceed this). Even this brief tour emphasised for CLAN the vital role of CLIP in empowering families to maximize the quality and timeliness of in-home care so as to help reduce the impact on in- and out-patient services at NICH.

Congratulations CLIP and NICH! 

In all, CLAN was extremely impressed with CLIP's Club meeting and we are optimistic about the future for children and young people living with CAH in Pakistan. There was an absolute buzz in the room at the end of the meeting - CLIP was a clearly humming with the self-generated electricity of an empowered group. A follow-up CLIP Executive Meeting was planned for 6 December 2014, and CLAN wishes CLIP every success for the journey ahead. Well done!

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