Children’s lives are being put at risk because of a persistent, systemic lack of appropriate paediatric medicines. The Global Accelerator for Paediatric Formulations (GAP-f) aims to give all children equitable access to medicines they need.
Watch what Solange Baptise had to say at the launch of the GAP-f strategic plan:
Read the full transcript here:
If you could tell us about the importance of civil society when speaking about developing and delivering paediatric medicines and from that, how can civil society bring children’s needs to the table?
Thank you very much. Hi, Patricia. Hi, everyone. It’s such a pleasure to be here. It’s a very exciting time for this launch, seeing the fruits of a lot of labour.
Like Mari-Angela said, and as we also saw on the video, the problem we’re facing is not one of science, right? It’s not one of actual molecules themselves, but the really big issue we are facing are the persistent systemic barriers to innovation and access.
And you know, how often have we seen great products brought to market with low uptake or little demand? Or not exactly going as was planned in theory or design in this sort of a programmatic or product pipeline.
And then when we look at the paediatric space, we have many challenges to overcome. I think the first place I would start and most people who know ITPC’s work, we will continue to speak out. Unfortunately, we still see health and health products from a capitalist and market perspective. We end up talking about volumes and markets, and when you think about it from a paediatric perspective, they are not large and so this leads to these persistent issues that we see, that are long time spans for development of formulations with weak market incentives and so we end up with pricing issues or just simply a lack of a product.
Then when we do get the product, we have rollout problems right? Rollout of the products always takes time, and we need a clear sense of who needs them, which leads us to the issues of access and the critical need for increased access and capacity for in particular things like early infant diagnosis when it comes to HIV.
Civil society and more specifically, parents and guardians of children needing medicines are the critical stakeholders, right? Because children don’t have a collective voice outside of that group. I think we all can see this, but in order for them to be effective in communicating and amplifying the needs of children, we need to consider a few critical things that I just wanted to bring out here.
Guardians and parents seldom treatment literate. They aren’t treatment education programs aimed at this group, so you find it very difficult for this group to collectively plan together and have one voice and that has been critical in many of our movements, especially HIV, where we’ve seen that when we come together we’re able to amplify issues; when you have a collective voice and we also know the issues that are just the most pressing needs.
We have to tackle malnutrition, which has been made worse now due to COVID-19 and the increased food insecurity and job insecurity that many families face and then the effects are also to children.
And for HIV in particular. We know the issues of access to early infant diagnosis, diagnosis also of advanced HIV disease. I wanted to make sure we put that out there and also following up on the side effects of these issues for children separately.
The lack of appropriate paediatric medicines is putting children’s lives at risk.
The Global Accelerator for Paediatric Formulations (GAP-f) aims to give all children equitable access to medicines they need.
— ITPC Global (@ITPCglobal) March 15, 2022
You know you asked for short remarks I wouldn’t be super long. I wanted to end by reminding us of the framework that we’re using that was just shown up on the screen, which was to prioritise, align, then accelerate and intervene.
Effective communities have a role in each of these aspects of the framework to deliver impact.
We often end up having communities rubber stamp something, saying yes, we read this and this sounds good or simply be the ‘tested upon’, so please, let’s find a clinical trial, let’s test this new medicine, let’s see if this diagnostic innovation that we’ve come up with can work or, or ask them be engaged at the end to generate demand. “Why aren’t you using it? Look how great it is? Why aren’t you using it?”
The civil society really needs to be clearly unpacked. Civil society is in a sense too large a group.
We need to think about effective communities, and we need to think specifically about parents and guardians of children to be able to articulate their needs, to keep their voices amplified with the needs of children, and also to monitor the rollout through community led monitoring and bring solutions to the table where they can see them and also to hold duty bearers accountable.
I think each of those that I’ve mentioned, everyone will be able to think of an example in any disease they’re working in where they can see the role of effective community. So, we look forward to being a valued partner and civil society in this forum and I’ll stop there. Thank you.