Newsletter – September 2020

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At Last! A Sixth Patient in Uppsala.

After a two-year break, finally a new patient.

A sixth patient has started receiving doses of the potential NET therapy, AdVince, in Uppsala.  This finally puts an end to the two-year drought of participants.

Why has there been so little progress in the study recently? There are several explanations: NETs are rare and suitable patients hard to find; the protocol for this study is restrictive and complicated because it is a first-in-humans study of a genetically modified virus and that demands caution, and participation was initially restricted to Swedish patients.   Slow recruitment is a common problem for clinical trials.  80-90% of studies fail to start on time because there aren’t enough participants.

In January of last year, we flew out with the other main funding source of the study, the Swiss foundation VictoryNET, to push things along.  We got the patient catchment area widened to include the rest of Scandinavia and the UK.  Meanwhile, Professor Magnus Essand, the lead scientist of the team that engineered this innovative cancer-battling virus, has worked tirelessly with the University of Tübingen to set up a second study site, in Germany.  This is due to open later in the year and represents a HUGE step forward.  In the next issue of this newsletter, we’ll publish an interview with Professor Ulrich Lauer, who will lead the study there, and a report of our recent visit to look around his lab and hospital.


Warwick University wins £40k to study iCancer new funding mechanism.

In 2017 we wrote a paper for the Journal of Medical Ethics about a radical new funding mechanism for early phase clinical trials.  Our idea, now called Committed Philanthropy, was extremely simple: if a rich patient-funded all (or a substantial part) of a clinical study, then he or she should be guaranteed a place on the trial, assuming they still meet the inclusion/exclusion criteria.

Committed Philanthropy represents a radical break with tradition.  Until we proposed the idea, it was assumed that getting patients to pay for places on clinical studies was automatically unethical, because it enabled rich patients preferential access to experimental treatments.

Our 7,000-word article proved this was not the case if one or two rich patients paid for the entire trial, i.e. not just for themselves, but for all the other people taking part.  In this case, there was a corresponding benefit to non-paying participants, who now had access to an experimental study that would have been otherwise unavailable.

It is a Robin Hood approach to funding neglected work, not a Sheriff of Nottingham one.

Why is this so important?  Because it represents a potentially lucrative new funding source, especially suited to underfinanced and neglected research, which often includes the most exciting new work.  If properly organised and supported, Committed Philanthropy could mean hundreds of millions of pounds of new money for innovative medical ideas.  We used a nascent version to help fund the trial in Uppsala – and raised £2 million in eight months.

In January, Heather Draper, Chair of Bioethics at Warwick University, started a 13-month project to see if we can produce acceptable policy and guidance for NHS research ethics committees about Committed Philanthropy.

If this does turn out to be possible, the project may smooth the way to research ethics committees at NHS hospitals reviewing the clinical study proposals that are to be funded by Committed Philanthropy. It is a massive confidence boost for us.  This is the first time an academic institution has put real money and expertise behind our idea.

The project is funded by a £40,000 grant from UKSpine Knowledge Exchange fund.  UKSpine hopes Committed Philanthropy might one day promote innovative research into the ageing process and age-related diseases.


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