As Executive Director of CITAMplus, an advocacy organisation based in Lusaka, Zambia, Carol Nawina leverages her personal journey with TB, HIV, and Type 2 Diabetes, alongside years of grassroots engagement, to drive policy change at national, regional, and global levels. Carol Nawina, who has lived with and campaigned for better treatment for HIV and TB, speaks about joining MPP in the fight to improve care for people living with diabetes in low- and middle-income countries.

 

“One day I was feeling a bit dizzy, and I couldn’t see properly. My vision became blurred. I started getting thirsty and I had no idea why. Then my sister suggested I had symptoms of diabetes. It was really painful that I had so much knowledge about other diseases like TB and HIV, and actually even cancer, but zero idea around diabetes. And when I found out, it hit me so bad, I went into a depression. I even became suicidal.”

These are the stark but honest words of Carol Nawina, the newest member of MPP’s Community Advisory Panel (CAP), who has joined the team as an expert on diabetes. Despite her initial shock and already living with HIV and TB, Carol did anything but let her newly discovered condition destroy her.

‘Everything I heard about diabetes was really bad’

“That’s when I realised the true impact of mental ill-health. I used to think that mental health issues were only for certain people. It wasn’t until I was diagnosed with diabetes and became so depressed that I felt suicidal, that I understood mental health issues are real. So, I thought with all my other co-infections, my other comorbidities, I’m sure I’ll die soon. But then I took time to read about it, to educate myself and well, I found out I could actually manage it the same as the other comorbidities that I have.”

Since then, she has complemented her advocacy work on HIV and TB with an equally strong commitment to tackling diabetes.

“I do advocacy work at the country, regional and global levels,” she says, “to ensure that the Global Fund is fully replenished every three years. But at the same time, I also ensure that at country level, affected communities as well as civil society organisations are also able to access those funds. Because we don’t want the funds to just to go to governments and not those working directly in the field. So, I help ensure that resources are sufficiently mobilised so that civil society organisations and affected communities are also part of that process.”

Differences in the field between diabetes, and HIV and TB

But Carol also makes the important point that whilst campaigning and advocacy in diabetes is no different to her campaigning roles in HIV and TB, things are different in the field. “The kind of activism that we do in HIV is a bit different, which is what I want to bring in. It’s just trying to find a way to balance, because at the end of the day, all we want to do is to ensure that there’s affordable and quality access to treatment for diabetes, as well as all the other communicable diseases for everybody around the world, regardless of status.”

She is also keenly aware of the specific challenges around diabetes that need to be surmounted. “In my country, Zambia”, she says, “The testing strips are so expensive, really, really expensive, and people cannot afford them. So even when you go to the health facility, they’ll charge you to be tested.”

Information on diabetes is minimal

“But the other big challenge”, she continues “Is that information is very minimal. When I talk now about HIV and the HIV cycle, some people think I’m a doctor because we were given so much information from the beginning of the HIV work in the early 2000’s.

“With diabetes, it’s the opposite. People call it the ‘sugar disease’. So, people believe if you remove sugar from your diet, then you’re fine. Others say that it’s witchcraft. Many don’t understand that carbohydrates are an important element too.”

“So people need information. The information on diabetes is still very medicalised. So, I’m trying to see if there’s a way we can find a simplified language for people, especially in the communities, to understand. Here in Africa, we have very good food, very good vegetables, very good greens, food that people can eat to manage their diabetes, but people don’t know and don’t fully appreciate the benefits.

Consuming junk food as a sign of wealth

“Here we feel if you’re going to eat junk food, there’s a suggestion that you’re wealthy! So, people would rather go and eat unhealthy and take out healthy foods like pumpkins and sweet potatoes. So, my concern is to also educate people that there are carbohydrates and other foods and that you can manage when you’re diabetic.

It’s also vital to destigmatise diabetes. People don’t want their families, neighbours and friends to know that they’re diabetic. It’s not a death sentence here. Because sometimes when there’s minimal information out there, it tends to become misinformation. There are so many myths and misconceptions out there, and it may take a long time to make people understand that this is a manageable disease.

Making a difference with MPP

“I wanted to work with MPP because I thought I’d be doing a disservice to other people affected by diabetes if I didn’t bring my voice and the voice of others, to make a difference. Like I said, my main focus is on the reduction in the cost of the diabetes medication, and especially cost of testing strips. So, I thought I could be at a table where I could influence some of this change.

“I’d like to see MPP continue what they’re doing, especially the accelerated way at which some of these commodities come to market. But if there’s a way I can help to better accelerate access to these commodities, for me I believe it is to bring the voice from the ground because we are always at the forefront of product introduction.

“In the end, it’s about seeing what is happening at country level and the best way for us to ensure that the end-product actually reaches the intended user at a good price, that quality medication is accessible and affordable, and the people actually get a better quality of life after using the product.”