Laboratories have embraced the digital age. Isn’t it time medical logistics did the same to save resources and lives, asks Jo Eames.
We have the evidence of a successful drug trial that shows Givinostat has given positive outcomes to boys with Duchenne muscular dystrophy (DMD). It may not be a cure, but it could deliver tangible benefits for those able to access it. It offers the possibility of delaying progression of Duchenne. This could then save the NHS funds by delaying the onset complications of DMD: the gain of more years of independence and reducing the need for intensive costly interventions.
Givinostat is now available for EAP (early access programs) but, due to administration and resources, patients are not able to access it yet. As a parent and patient advocate, should I have to write to MHRA, to m y NHS trust and my MP to ensure medicines are made available? Why do we have to campaign for our boys’ wellbeing and lives? This is not down to cost; it is down to administr ation.
A Laboratory News article – ‘Real time tracking could slash millions from bill for lost NHS lab samples’ [1] – identified digital technology already employed in the retail and logistics industries being used in Leeds. This ensures that the NHS saves wasting resources – person hours, cancelled appointments – and efficiently targets people for treatment.
It could be the difference between him losing his arm strength and being able to feed himself
So, how come in in the era of Lab 4.0 we lack a more efficient system to administrate drugs within the NHS? Why are we waiting on human capacity and not giving medical professionals the support they need to make medicines available for all? If this were a different sector we would not be talking about IT and administration backlogging productive delivery – the solution would already be there.
During the Covid epidemic, the world managed to massively reduce the times for drug development, bringing drugs to market and impacting end users at scale. While Givinostat’s target group is far smaller than that of Covid vaccines, there is a common issue: developing a speedier response for bringing therapies to patients. The Government has voiced its enthusiasm for that more agile, responsive and individually tailored health service but that only happens if the speed of lab scientists in developing drugs is complemented with efficient bureaucratic processes.
Since December 2024, the MHRA has announced that Givinostat will be open label, meaning my son – who does not qualify under the EAP – will be able to access the drug. Again though, we must wait: for NICE approval and then “three months” for the NHS Trusts to provide the drug. It could be another year before my son receives it. This could be the difference between him losing his arm strength and being able to feed himself.
- Jo Eames is a patient advocate and mother of a son with DMD
