Access Accelerated supports the NCD Alliance to elevate the voices of people living with noncommunicable diseases (NCDs), building on our shared commitment to meaningfully involve those affected in the creation of sustainable solutions. Labram Musah, the National Coordinator of the Ghana NCD Alliance shares how the NCD Alliance’s Our Views, Our Voices initiative training model has boosted advocacy efforts to help policy makers in the country see a more complete picture of the needs of individuals living with NCDs, and how they hope to scale-up this important tool.

MEANINGFULLY INVOLVING PEOPLE LIVING WITH NCDs

Up until recently, the notion of involving people living with NCDs in the NCD response is not something we have seen extensively in Ghana, so NCD Alliance’s support through the Our Views, Our Voices initiative has been extremely helpful in elevating the concept of meaningful involvement of people in our communities and addressing stigma. The Our Views, Our Voices initiative sets out to promote the meaningful involvement of people living with NCDs, advance their rights, and combat stigma and discrimination.

We began by building this community of advocates and empowering them using an established training model on how to build narratives on NCDs that puts people first.

What we realized was that training individuals to be able to speak to policymakers presented a huge opportunity: a tool by which authorities and governments could get a fuller picture of these people’s needs, helping them craft more complete policies.

We realized that we were the custodians to ensure more responsible all-encompassing health policies. Today, we count on a five-region rich network with each region having a group of around 15 people involved, including people living with NCDs. We are making considerable progress and I am hoping we will be able to extend this training so that, down the line, more people can combine efforts to advocate for their own welfare and that of others within their community.

ADVANCING MORE COMPLETE POLICYMAKING

The initiative also elevated the involvement of civil society organizations (CSOs) at the policy level. In the past, this involvement has been largely limited to rubber-stamping policies once they have been made. We wanted to change this setup and mindset, and I’m pleased to say we have started to see a real shift.

Governments are increasingly becoming aware of the need to have the perspective of civil society in crafting comprehensive policies. Through Our Views, Our Voices, we are building the capacity of CSOs to become meaningful contributors to policies, rather than merely endorsing them. Engagement with government doesn’t end with just the input and perspectives of CSOs and people living with NCDs; we have to build local evidence to support our advocacy asks, we need to continue to raise concerns, put forward recommendations and make specific asks and demands for governments to meaningfully address NCDs.

MAKING WAVES THROUGH COURAGE AND PERSEVERANCE

When we kicked off the initiative, there was a fair amount of uncertainty. We needed to work out how to carry out the training of individuals in a way in which we could mobilize communities to talk about NCDs and engage the media, too. And there’s no denying there were challenges. At times, it was difficult for the government to accept the concept of meaningful involvement, or that people with NCDs could come to the table to co-create.

You can imagine that for the people living with NCDs, it’s tough to be heard and for their experiences to be validated. One of the most important lessons we learned in overcoming these challenges was to continue to push the message, even when it felt like it was falling on flat ears. Through a good deal of courage and perseverance on the part of our patient advocates, I’m pleased to say that now they are making tremendous waves.

Meaningful involvement is now advocated for not just at the national level but community level as well. People living with NCDs have, in 2022-23, effectively embarked on community-led monitoring using the community scorecard as the social accountability tool. We also realized the importance of having champions to reinforce the value of the meaningful involvement of people living with NCDs. Our advocates are already doing a remarkable job, but it can be very helpful to have leaders with a wider audience and influence to amplify this message. Finally, it is important for us to continually create opportunities, provide the right platforms and facilitate dialogues so that people living with NCDs are able to contribute,  to input, and deliver their message.

LOOKING FORWARD

We are making significant headway and progress: Ghana NCD Alliance is now a key stakeholder at the Ministry of Health, there is a national NCDA Strategy that we contributed towards as civil society, and Ghana became the second country in the world to produce an advocacy agenda for people living with NCDs. While there is much more to be done, there is no doubt that we have contributed to meaningfully involving people living with NCDs in the political discourse, and we will continue to ensure that this work continues to expand. Looking forward, we will continue to elevate NCD issues at the highest level of governments and will always seek to include the perspective of someone living with NCDs. We’ve shown that people living with NCDs can speak up and share their perspective.

The initiative has been able to reach communities and the Community-Based Health Planning Services (CHPS) has become a huge success; for that we can be extremely proud.

Read more interviews in the Access Accelerated report: Key Lessons in Advancing Access to NCD care.