Africa Diabetes Alliance: Empowering Advocacy in Africa – by Edith Mukantwari

Edith, co-founder of Africa Diabetes Alliance (ADA), wrote us an inspiring Global Postcard from Kampala, Uganda following our recent Minisode. Read on to learn about how ADA seeks to disarm diabetes myths daily and nurture a vibrant, engaged, informed, and empowered community of young people living with diabetes in Africa.

As a youth-led organisation, Africa Diabetes Alliance recognises the potential of the youth living with diabetes. We strive to move the needle forward in advocating for, championing, and exemplifying better diabetes care and prevention of diabetes and its related complications. Seventy-five percent of Africa’s population is under age 35 and a significant part of these are young adults with abounding energy that can be leveraged for this honourable cause. 

The majority of young people come from disadvantaged backgrounds with no opportunities to get quality education, healthcare, nutrition and well-paying jobs among others. This disadvantage is further exacerbated when they are diagnosed with type 1 diabetes or any other non-communicable disease (NCD) that severely compromises their potential. On top of this, there is a lack of access to information, mental health challenges, poverty that cripples any efforts to seek or get adequate healthcare, necessary medications, education or food, and a devastating lack of supportive systems and policies to aid us from these debilitating conditions. These challenges are quite diverse and often compounded by severe lack of funding for NCDs advocacy, research and service delivery. It is no wonder that many people living with diabetes and other NCDs in Africa are largely resigned to their fates, having little to no power to change anything.

We desperately want to do all we can to improve our lives as people living with diabetes in Africa. Advocacy is an amazing tool that’s often employed in calling for system-wide change and has had rousing success in HIV/AIDS. However, it does take a lot of resources, creativity, sacrifice and bravery. Asking people that are already suffering to take on the extra burden of advocacy, at a huge personal risk, is an uphill task in our developing nations. We seriously admire and respect all NCDs advocates who continue to take on this cause. Especially as advocacy is most effective when people living with the condition are the ones championing it.

These overwhelming circumstances do not take away our desire to better our lives, but they do significantly complicate things. We started Africa Diabetes Alliance (ADA) in 2018 as many of us struggled on our own with nowhere to turn for support or guidance. ADA provides a platform and opportunities to be heard, and come to terms with difficult, often severely compromising circumstances. Together, our efforts are magnified so they can echo and be a light for many more young people living with such difficult odds. We want others to have hope and see that it is possible to be healthy, happy, successful, whole, and fulfil our potential, even while living with diabetes.

At Africa Diabetes Alliance, we recognise that we, as people living with diabetes, are a potent and sustainable, albeit underutilised, solution to our very real challenges. We want to support people living with diabetes and other NCDs to stand up and be counted as real change makers. As our tagline says, disarming diabetes daily, says, change starts with us taking the bull by the horns and fighting back in more ways than one. We want to even the playing field so we, too, and many more in the future, can have a chance at achieving our dreams and chasing our goals.

None of us can take on this fight alone. But together, we can make a real difference – not just for ourselves, but for those that are yet to be diagnosed. We cannot afford to sit idly by and leave all the work of advocacy to our doctors, nurses, politicians and healthcare businesses. If we want things to truly change, we must join the conversation and be active participants in our own healthcare and advocacy. 

We thank our esteemed healthcare practitioners for all they do for us. In the same breath, we also urge them to inspire more patients to speak up, to teach them and empower them to do better, to encourage them to take education seriously. As a result, they can join healthcare, legal, economics and education professions that can uniquely position them to advocate better. We urge healthcare practitioners to include patients in conversations and decisions about their healthcare and to involve them in projects and training opportunities that they can actively lead. I also urge fellow people living with diabetes to do our part; to listen to instruction, to report back, to challenge ourselves to do better, to have a higher purpose and ambition for better service delivery, attend advocacy events, participate in our communities, ask questions, engage with other actors in advocacy. We need to speak up when things work out, and especially when things go terribly wrong, for so many of us can learn from one another’s stories while also creating awareness in communities.It is of utmost urgency that we join the conversation, empower ourselves and hold our leaders accountable. Our healthcare service providers are doing their part and have fought for us remarkably. But their efforts fall short if we do not do our part too. As patients, if we stand aside and leave this fight to others, we only have ourselves to blame if things continue to be gloomy. We shall continue to advocate, inspire, empower and equip people in Africa to disarm diabetes daily and we hope that more people will join us in this enormous undertaking. We cannot thank the changemakers at Beta Change enough for the opportunity to share our story in a recent Minisode and their May newsletter. Thank you and be blessed.