November 24, 2020
Our Views, Our Voices – lived NCD experiences from around the world
A new publication from the NCD Alliance explains the commonalities in needs and challenges across the different NCD conditions.
Noncommunicable diseases (NCDs) are recognised as the leading cause of death and disability in the world, disrupting people’s lives, our societies and the global economy. The NCD Alliance has launched a new publication – Towards an inclusive NCD agenda: A collection of lived experiences from around the world – that aims to illustrate the lived experiences and realities of people living with a wide range of NCD conditions – including cardiovascular diseases, cancer, diabetes, chronic respiratory diseases and other rarer conditions.
The need and value of putting people first in the response to the rising prevalence and impact of NCDs has gained recognition among policymakers and there is growing acknowledgement that an increasing number of people are living with multiple NCD conditions.
Across 21 testimonials generously shared by people living with NCDs and care partners from around the world, the publication explains the commonalities in needs and challenges across the different conditions and contributes to the efforts of the NCD community to frame an inclusive NCD agenda.
Heather Koga from Zimbabwe lives with type 2 diabetes, hypertension and obesity and is a member of the IDF Blue Circle Voices network. She shares her story of the challenges that managing multiple conditions can bring.
Before I was diagnosed with type 2 diabetes at the age of 33, I hardly knew anything about it because there is very little education and awareness on this condition. After my diagnosis, I had to find out more about diabetes on my own, and I realised there were many people like me with no access to information. I started support groups on social media, where people living with diabetes interact, and share experiences and resources. We also update each other on where to get affordable medicines and treatment, and other types of support. There is a general consensus in our community that medication, equipment and specialist care are generally very expensive and out of reach for many people, especially insulin.
This has led many people to avoid their medications for long periods or ration their dosage, leading to complications. Given that specialised care is also very expensive, many people have had to manage their condition without the expertise of endocrinologists, specialist physicians, dieticians and other professionals. Personally, I have had challenges in managing two conditions at once, my diabetes and hypertension. Taking medication for both has resulted in a pill burden that has been particularly problematic for me, leading to anxiety, depression, low motivation and worse treatment outcomes.
The lack of education and awareness around NCDs leads to stigma within families and communities, including in the workplace and schools. Our conditions are often associated with witchcraft. Some people blame people living with diabetes for bringing it upon ourselves by overeating or eating too many ‘sweets’. Some even shun people with diabetes, thinking that it is contagious. I share my personal experience because at one point I was hopeless and thought I would never be able to live and enjoy life. My message to people living with diabetes and other NCDs is that they should not lose hope, but continue to make efforts to learn more about their conditions and become peer educators.
My message to people living with diabetes and other NCDs is that they should not lose hope, but continue to make efforts to learn more about their conditions and become peer educators.
Policymakers must ensure that healthcare and medicines for NCDs like insulin for diabetes are subsidised and that we have robust education and awareness programmes for people with NCDs, their care partners, families and communities, and that includes education on NCDs in schools. Policymakers must support the continued education of healthcare professionals and have teams specialised in NCD care. People living with NCDs must be involved in decision-making for policies affecting them, and therefore policymakers must engage us at every stage of policy design and implementation. Policymakers must also widely consult other relevant stakeholders who have an interest in the care and management of NCDs, including healthcare professionals, and partner with civil society to ensure the rights and interests of people living with NCDs are safeguarded.
Towards an inclusive NCD agenda: A collection of lived experiences from around the world is available for download here.
Heather Koga’s testimonial is reprinted with the kind permission of the NCD Alliance.
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