Hub and spoke – not just about bicycles
By Rich Gorman
Last year, the first gene therapy to treat severe haemophilia A was granted ‘conditional marketing authorisation’ in Europe (basically, fast-track approval for a medicine fulfilling an unmet medical need). It’s against this background that the article ‘The journey of gene therapy in haemophilia – putting the patient at the centre of the hub and spoke model’ was published in The Journal of Haemophilia Practice.
As the authors note, it’s now only a matter of time before gene therapy for haemophilia becomes much more widely available. With that on the horizon, it’s vital that healthcare systems are prepared to deliver the new models of collaborative care that will be needed to ensure patient gene therapy journeys are effective, ethical, and efficient.
Connecting care and expertise
As the article reports, a variety of organisations recommend that gene therapy for haemophilia in Europe is delivered through a ‘hub and spoke’ model of care. It might sound like a metaphor straight from the Tour de France, but the hub and spoke model is quite simple. Basically, a large centre provides specialist expertise to support many smaller, geographically dispersed centres.
In haemophilia care, the hub and spoke model already exists to some extent, with the network of larger Comprehensive Care Centres and smaller, more localised, Haemophilia Treatment Centres. In a gene therapy context, this is likely to mean a hub centre will have expertise on things like dosing, the potential need for steroids, and aspects related to response rates, while spoke centres are likely to be a patient’s regular centre, where they have a longstanding care relationship.
The article explores and identifies what the roles and responsibilities of the patient, the hub centre, and the spoke centre might be throughout the entire haemophilia gene therapy journey. The authors argue that it’s vital everyone involved understands one another’s expectations, and that patients are well informed about who will be supporting them, and where they can access services.
As an example, many people with haemophilia rely on the care team at their local treatment as a key source of information about new treatments. It’s these centres where patients might initiate conversations about gene therapy, but if it’s a spoke centre there might be less gene therapy-specific expertise. Spoke centres therefore need to be prepared to facilitate a discussion with an expert at the hub centre.
Questions of equity
As the authors note, there’s an important point about equity to think about here. Everyone affected by haemophilia should have access to the same level of information about gene therapies, regardless of where they live. People whose regular centre just happens to be a hub shouldn’t end up with better care and access to gene therapies just through a ‘postcode lottery’ (a geographic disparity). Nor should you be put off from accessing these innovative therapies because you live at a distance from a gene therapy hub.
The authors go on to explain how people with haemophilia should have the opportunity to speak with others who have already had gene therapy. Again, this will require outreach by hubs, to ensure that peer-to-peer groups can be facilitated – you shouldn’t lose out on an opportunity to speak to someone just because nobody at your particular spoke has experience of gene therapy.
Ensuring no one is left behind
Communication between hub, spoke, and patient will be incredibly important, and the authors give lots of examples of this. Haemophilia care providers will have to be confident in close collaborative working and liaison so that gene therapy can be delivered in a patient-centred manner that supports people with haemophilia.
It might sound simple, but there’s a lot of work to do to ensure that any successful rollout or mainstreaming of gene therapies can be achieved. I recently had an experience where my ‘spoke’ wasn’t even able to share an MRI scan with my ‘hub’. Getting strategies in place to make sure that hub and spoke communicate and coordinate effectively around plans for monitoring and follow-up during gene therapy is really important – and it’s going to be the focus of a lot of work for healthcare professionals in the coming years!
Patient advocacy is going to be a huge part of this too. Patient organisations need to challenge health care systems to ensure that quality care can be achieved, that people with haemophilia have the best opportunity for gene therapy, and that no one is being left behind
Further reading
Noone D, Astermark J, O’Mahony B, et al. The journey of gene therapy in haemophilia – putting the patient at the centre of the hub and spoke model. J Haem Pract 2022; 9(1): 156-166. doi: 10.2478/jhp-2022-0021
About the author
Rich Gorman lives with severe haemophilia A. He works as a researcher at Brighton and Sussex Medical School.
For more information about The Journal of Haemophilia Practice or Haemnet’s publishing activities, email us at publishing@haemnet.com
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