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During this week of Global Action on NCDs, five youth health advocates from five countries launch a new podcast to discuss what it is to be affected by chronic conditions and why these conversations are critical, not only in global discourses about universal health coverage and NCDs, but also in our daily lives. Chronicles is a podcast about real people with real stories, having real conversations on health.  In today’s blog, two of the five hosts, Micaela Neumann and Maia Olsen, discuss how a memorable lunch turned into their first experience in podcasting!

Our journey to the podcast, much like the endeavor itself, was unexpected…

In May 2019, during the 72nd World Health Assembly in Geneva, Switzerland, four of us –  Chantelle Booysen, Micaela Neumann, Maia Olsen and Joab Wako, based in South Africa, Switzerland, the United States and Kenya respectively – sat down for a casual lunch among a few friendly faces in the cafeteria of the International Committee of the Red Cross. What began as a rare, brief break in between the hustle of meetings and side sessions evolved into a frank and heartfelt hour-and-a-half chat about the “day-to-day” of experiencing chronic illness while in our 20s and early 30s across the settings where we live. Each of us initially came to Geneva for different reasons and under different remits, with one exception – we are all advocates for NCD prevention and control. None of us expected the conversation that would unfold, how meaningful it would be for us, and how it ultimately became the prologue to this podcast.

By chance – and we would argue – sheer will power, we found ourselves representing a critical demographic at this year’s World Health Assembly. Our voices were the voices of youth, and our call was for improved healthcare and for equity in health access, both to physical and mental health services. It turns out we had another call – one that, as advocates in such a professional setting, we have not found as often as you would think. It is rare to find someone who you can so quickly and so comfortably share your lived experiences. We were able break through the misconceptions and vulnerabilities of living with chronic illness and have a real conversation about our health – in all its good and bad. 

We left the café that day feeling motivated to keep the conversation going.  It began with some Skype calls and dozens of WhatsApp messages – an online support community of our stories and lived experiences.  As the discussions became longer and more in-depth, we realized “this” was something worth exploring further and with a larger audience.

Because here’s what we know…

More than half of the world’s population is comprised of people under the age of 30. Of this half, 1.8 billion people are between the ages of 10 and 24, and 90 percent of these youth live in developing countries. At the same time, non-communicable diseases are the leading cause of morbidity and mortality, and incidence continues to rise. Despite this, youth are not engaged in conversations around health to the extent that they could be, nor are they necessarily supported by international health donors – only 2 percent of global development aid for health is for young people between the ages of 15-29 despite the fact that mortality rates are not decreasing as quickly as it is for children under the age of five.

When you think about NCDs and health, you may not picture our faces. You may not see the face of a young professional and law student living with bipolar disorder, or the daughter born to a bipolar and HIV-positive father. You may not see the face of an engineer at the beginning of his career who suddenly required a kidney transplant. You may not see the face of a woman who had already survived cancer by her early 20s, who had to later learn how to manage a severe immune disorder. And in Grace Gatera, our fifth podcast host from Rwanda, you may not see the face of a woman living with PTSD, depression and panic disorder.

In our first episode, Joab calls us “ordinary people with extraordinary conditions,” which feels like a fitting description. And yet, Micaela corrects him: our experiences are not all that extraordinary. Young people all over the world – and far beyond the US, Switzerland, Rwanda, South Africa, and Kenya – are affected by chronic illness and have stories to tell.

You may not see our faces, but, now, you will hear our voices. And, in our voices, we hope, during this week of Global Action on NCDs, you hear the strength of young advocates in achieving the goals for tomorrow’s health future.

Listen to the first episode!

If you are interested in joining the dialogue, email the hosts at ChroniclesHealthPodcast@gmail.com.

 

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Meet the hosts of Chronicles:

Micaela Neumann (@MicaelaNeumann_) is a global health advocate and researcher, newly re-entering the area of digital health. Her father lives with bipolar disorder and HIV, and she grew up with his magical thinking and his commitment to achieving wellness of mind and body. She is based in Geneva, Switzerland.

Chantelle Booysen (@channy_bird) is a global mental health advocate with lived experience from South Africa. She represents both local and international mental health organizations, with her main focus on creating mental health support solutions for young people as well as addressing unemployment caused by mental health conditions in the work place.

Grace Gatera (@kishwitty) is a lived experience mental health advocate/activist hailing from Kigali, Rwanda. She is a young leader for the youth campaign by the Lancet Commission on Global Mental Health and Sustainable Development. Having witnessed firsthand the effects of a lack of medical care and youth representation in mental health in her home countries, Grace is dedicated to making sure that young people have affordable comprehensive access to good quality mental health care in her lifetime.

Joab Wako (@origen_ii) is an industrial engineer and a kidney transplant recipient. Transplantation gave him a second chance! Now he is a patient advocate lobbying for better NCD prevention campaigns and support systems for young people living with organ failure in Kenya.

Maia Olsen (@maiacaryn) is a global health advocate based in Boston, Massachusetts. She was treated for Hodgkin’s Lymphoma at age 21, prior to being diagnosed with Common Variable Immune Deficiency (CVID) a few years later. She manages the NCD Synergies program for Partners In Health, an NGO focused on providing a preferential option for the poor in health care.