Today, the All-Party Parliamentary Group (APPG) on Stem Cell Transplantation held an oral evidence session for its inquiry into barriers to accessing treatment and care (see the original launch call here). I was invited to attend based on a written evidence submission I submitted in Autumn 2020, and contributed to the conversation at the session.
My submission drew on Mix & Match project findings thus far, and discussed how
- patient appeals for stem cell donors require huge amounts of effort and resource on part of individual patients and their families, and that the impacts of this should be acknowledged in policy.
- Disproportionately many of these appeals are for racially minoritised (or ‘BAME’) people who are compelled to tell the world private details about their diagnoses and prognoses to compel acts of donation.
- It’s tiring work and it shouldn’t need to happen, but it is vital that – for as long as it continues – their labour receives appropriate support. The UK’s registries like Anthony Nolan and smaller third-sector organisations like African Caribbean Leukaemia Trust, and Race Against Blood Cancer must receive support and resource to ensure they can undertake and prioritise the important work they do in liaising with patient appeals.
In the oral evidence session, I had an opportunity to mention this. I noted that often, when we speak about improving minority engagement with biomedical projects like tissue donation (be it organ, blood or stem cell), we talk about ensuring these messages come from within racialised communities who are best placed to talk to their audience. I noted, however, that it is vital that we think about the ramifications of this discourse, which potentially “responsibilises” individuals. Relying on communities to help themselves must not come at the cost of the harder, structural work required to ensure that people don’t need to be convinced into engaging with the systems that have a mandate to support them.
In the inquiry, there was also discussion about the international dimensions of equitable access. Anthony Nolan, the APPG secretariat, does important work with the World Marrow Donor Association and with national registries in other countries like India. I asked them at the inquiry about these efforts, and they discussed the important collaborative work they are engaged in to develop registries globally. I mentioned how important it is that we think globally about these efforts: there is an inherent issue of social justice in ensuring that the countries the UK relies on for stem cell import are supported with their own local health infrastructures. This is something that WMDA are prioritising, though it will certainly require a more substantial engagement from global health institutions well beyond the field of stem cell transplantation. As the World Health Organisation notes, successful stem cell transplants are both technically demanding and expensive, and they are ‘a treatment not yet accessible to all’.
The APPG hopes to release a report on the inquiry soon.