World Health Organization
Shaping Narratives, Driving Action: The 2nd WHO Symposium on Meaningful Engagement of People Living with NCDs, Mental Health, and Neurological Conditions
Meaningful Engagement of People with Lived Experiences
12 Nov 2024
News
We must make investments today to improve the lives of millions in LMICs and enable informed, healthier, better choices for all.” A call to action by Edith Mukantwari
Edith Mukantwari | 17 Apr 2024
Like me, many people living with NCDs are afraid that their lives will be cut short and lost too soon. I lived most of my 20’s afraid that I’d never make it to 30. A close friend of mine intimated the same to me the other day. The choices we’ve both made reflect this as they’ve often been made out of fear, uncertainty, dread, lack or even a combination of the four.
Living with a chronic disease or two, we are so afraid to be a burden to our loved ones, that we don’t ask for help, especially when we need it. We feel this pressure every single day to compromise our wants over our needs, particularly our medical needs. It is stressful to constantly need to choose between buying medical necessities or going to see a doctor over school fees, food or rent, given that many people with a lived experience of NCDs and mental health conditions are from poor family backgrounds.
We want to be ambitious, happy, and hopeful but many times, those feelings seem unattainable as we struggle to overcome daily fears and anxieties, often longing for better times and health outcomes that seem impossible to reach.
We have big dreams, just like everyone else. We want to work and earn an income, to study and excel, start families and build homes, and to be respected in our families and communities. We have the potential to be great teachers, students, inventors, employees, employers, speakers and more.
But NCDs are stealing much from us and the world. Without adequate healthcare, living with NCDs and mental health challenges launches many of us into a losing battle to keep up with our health needs. I truly believe people with lived experience of NCDs, mental health and neurological conditions are very resilient people. Unfortunately, this resilience is frequently weighted down and eroded by multiple systemic barriers, such as obscene costs of care, abject poverty, and a lack of inclusive, protective policies in education, healthcare, workplaces, and society at large. This erosion of resilience can only be stalled, and hopefully halted, by a whole-of-society, whole-of-government, multisectoral approach.
The T1D Index reports that in Uganda, a person living with type 1 diabetes will have 49 healthy years of life lost. My adolescence and youth have been swallowed up by distress from type 1 diabetes and late diagnosis of coeliac disease as well as ADHD. It is time that we invest and restore countless healthy years that have been lost and procure secondary prevention for people living with NCDs to keep complications at bay.
For people living with NCDs and seeking treatment, the methods of coping with the associated economic burden can be extremely challenging and have detrimental impacts across generations. Economic hardship affects more than our wallets. It affects employment, education, nutrition, gender equality – these right there are 5 SDGs, with a sixth, health, at its centre.
Globally, out-of-pocket spending for NCDs is estimated to be twice as high per visit to a health clinic compared to infectious diseases, which makes seeking and sustaining care for NCDs a significant financial burden. Of the estimated 100 million people worldwide pushed into extreme poverty every year because of these costs, we can assume that many of these are people living with NCDs due to the disproportionate costs shouldered by patients and the growing disease burdens.
We need you to be aware that we are often afraid of not being enough as friends, family, partners, or employees/employers, even though we want to be more for ourselves, our loved ones and those who depend on us. We have much to offer and we need you to make room for us to contribute. I have been very fortunate to work with inclusive mentors, who have given me room to contribute and grow. Let's continue to strive to create an inclusive environment that embraces and values all perspectives. Together, we can create a better future for everyone.
When I began my advocacy journey in 2018, it was out of sheer necessity because I was afraid to die having contributed nothing to the world. Since NCDs and mental health conditions do not discriminate, choose to speak up now and rise to build a better future for us all. These are great needs, and many people are willing to do the work. The missing link for us is the necessary financing.
No one chooses to be sick or poor, but these eventualities still happen and are on an upward trajectory in LMICs. How can we make the better and healthier choice the easier choice? Increased investment is needed since domestic funding for NCDs and metal health conditions in LMICs stands at less than 0.2% of NCDs multisectoral budget forecasting, and 2% of global health funding. Join hands to finance enabling policies, environments, programs, and mechanisms at all levels to sustainably design systems and empower communities that will push the needle forward to achieve health equity.
Every 1 dollar per capita invested in NCDs and mental health care reaps 7 dollars in return, prevents millions of deaths and secures more lives and incomes. I challenge you today, to think of all the people who are looking up to you, waiting on you to make a difference, uplift them, bring change and hope. We must make investments to improve the lives of millions, maybe billions in LMICs, and enable informed, healthier, better choices for all. Decide today to be a pivotal part of our success story and invest much needed resources in this work!
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This article is part of a series of call to actions and position papers by civil society actors and people with lived experience ahead of the Second Global Dialogue for the Sustainable Financing of NCDs and Mental Health in June 2024. The text summarizes remarks by Edith Mukantwari and her eighteen-year journey living with type 1 diabetes, coeliac disease, and ADHD, at the WHO Multistakeholder Briefing on the WHO/World Bank 2nd Global Dialogue on Sustainable Financing for NCDs and Mental Health.
