NGO CSW61 Forum: Five Country Youth-led Perspectives on Healthcare and Women’s Prosperity

NGO CSW61 Forum: Five Country Youth-led Perspectives on Healthcare and Women’s Prosperity

A Report by Maryam Athar Khan, CLAN's UN Youth Rep from Lehigh University

CLAN participated in the Sixty-First Session of the Commission on the Status of Women (#CSW61) and highlighted its role in empowering women economically in developing countries across the world.

CLAN UN’s Youth Representatives spoke alongside Bethel Youth Aid Foundation’s representatives to highlight the relationship between providing adequate and sustainable healthcare and empowering women economically and socially. CLAN strives to achieve this goal by placing an emphasis on developing community support groups. These organizations provide patients and their families with comfort, solace, and companionship by allowing families of children living with NonCOmmunicable Diseases (NCDs) and other chronic health conditions to interact with one another. CLAN has found that whilst it is important to provide easily accessible and cheap healthcare options, it is equally important to focus on the social implications and effects NCDs might have on the community.

Sharing stories from Pakistan

In Pakistan, CLAN primarily works with children living with Congenital Adrenal Hyperplasia (CAH), Osteogenesis Imperfecta (OI), and Type 1 Diabetes (T1D). CLAN's UN Youth Rep Maryam Khan shared the stories of two female individuals she had met in Pakistan whilst visiting NICH to learn more about CLAN's work, to demonstrate just how important community development and capacity building is to improve the lives of those affected by NCDs.

The first female mentioned was Maryam; a strong, bright girl who holds a passion for studying. She values education and aspires to be a medical doctor one day. However, she was diagnosed with CAH a few years ago and the complications of this condition (resulting from a lack of affordable medicine and healthcare) has silenced the once strong, spirited Maryam her mother remembers. Maryam is now extremely shy and no longer speaks out loud, for fear of being a subject of mockery. Her mother believes involvement in a CAH community would allow Maryam to mingle and talk with fellow CAH patients. She hopes one day that Maryam will break out of the shell that her daughter has confined herself to. Her mother believes community support systems are extremely beneficial for other families like herself. “Because after all,” her mother said, “it’s love and support that Maryam needs most right now.”

The second female impacted by CLAN’s work was an elderly grandmother who looks after her grandchild, Imtiaz, at the National Institute of Child Health (NICH - located in Karachi, Pakistan). Imtiaz is 14 years old and he was diagnosed with diabetes patient at the age of 5. His grandmother narrated to CLAN’s UN Youth Rep the story of how, for over 9 years, they have had to make several trips to the hospital for his treatment. Moreover, she described the pain, suffering, and confusion their family underwent upon first learning of Imtiaz’s diagnosis. He was the only individual with a sugar problem in the family and as such, they were in unchartered waters when they first found out. In addition, their commute to the hospital was often long, difficult, and tiring on both Imtiaz and his grandmother. Both his parents have to work due to financial problems, and as such, there is no one else at home to take care of him. More often than not, the family can not afford rickshaws and instead have to opt for bus transportation, which doubles their commute time. In the future, Imtiaz and his family hope to engage in community activities with their fellow patients and families to gain support from each other.

The challenges facing children and families living with NCDs in LMICs

CLAN's panellists also highlighted some of the other medical issues facing children and their families in low- and middle income countries (LMICs) today. For instance, a problem for families and children living with complex chronic health conditions in Pakistan is the generally low level of awareness about many conditions, and as a result even after a diagnosis is successfully made, parents are sometimes unable to properly grasp the enormity of the condition, and find the need for life-long treatment over-whelming. For children needing to take drugs throughout life to survive, the financial burden can be completely devastating and unnavigable. There is a need for increased awareness around the challenges facing children and families living with chronic health conditions in Pakistan - if not amongst the general population, definitely amongst clinicians and pediatricians. Too often, medication and treatment costs for families is a serious challenge in Pakistan. Most of the population of Pakistan is poor and around 46% of the population earns less than $1.25 a day. By way of a real-life example, the black-market cost of medicine needed to keep a child with CAH alive is $0.50 and can go as high as $2 for a day making it highly unaffordable for the people in general - even without considering the cost of the other necessities of life.

Through CLAN’s work in Pakistan, bringing families of children living with the same NCDs together as communities, health professionals and other partners are finding new ways to empower women and children. The provision of affordable, quality healthcare is important, but so too is a dedicated commitment to community development. The community support groups being set up, such as CLIP (CAH Living In Pakistan), provide mothers with the opportunity to bond with each other and empowers them by encouraging them to learn more about the best ways to care for their children living with CAH. It is these own mothers and parents who have taken it upon themselves to be a part of CLIP’s Executive board. They work tirelessly to ensure their children's rights to life and health are respected, protected and promoted, and explore advocacy and education campaigns that might help them achieve this goal. Coming together makes families aware that the power to administer change lies in their hands. In addition, it provides patients, such as Maryam, a voice and the opportunity to be comfortable with their disease.

If anything, the fact that so many of the individuals behind CLAN’s work in Pakistan are strong, leading females in their fields (such as Dr. Kate Armstrong, Cath Cole, Julia Ridulfo and Dr. Rabia Baloch), speaks volumes about CLAN’s promise of empowering women economically and socially by working towards a shared vision of equitable and sustainable healthcare for #EVERYchild.