Brain Tumour Research is a charity run by people who know first-hand the devastation that a brain tumour diagnosis can bring. Our response takes into account the opinions of those we know whose loved ones are using the DCVax®-L immunotherapy treatment: we welcome all steps that bring us closer to a cure for brain tumours, and this interim survival data provides our first glimpse of what we hope will be positive results once the trial is finished and published in full.
It is important that these results are seen as a stepping stone rather than as proof of a fully-fledged new treatment, as once again for a brain tumour trial the results show a benefit of only a few months for those patients who have responded positively – what we need is a cure for everyone, and we very much hope that the long term survivors who are participating in this trial continue to defy the odds. Only then can we begin to understand why they are responding more positively than others to the vaccine and hence how it can be developed to become more effective, for more people.
The beauty of this treatment is that it is personalised and non-toxic, with an encouraging safety profile. However, in this trial, open only to newly diagnosed patients, all were still treated with surgery and radiotherapy and in some cases also chemotherapy. This is an issue for all clinical trials, in that it is almost impossible to tease out how much the new treatment has worked: it is known that almost 20% of patients will always survive for around 20% longer than expected, without any explanation being available, and we must ensure that any increased survival is a true response to the treatment being explored.
Our primary worry stems from the fact that this treatment is currently only being offered to people in the UK who can either raise sufficient funds or afford to pay the £250,000 needed to access the treatment privately. Families are selling their houses, cashing in their pensions and life insurances or increasing their debts in order to keep loved ones alive. What happens when the money runs out and they can’t afford any more injections? What about all the people who may now feel that their only hope lies with this treatment, but who simply can’t raise that much money?
This is not always the case with promising new treatments, which are usually only available to those participating in a trial that is free. The situation with the DCVax®-L vaccine has arisen because the trial that has been reported on was closed to further patients in 2016, which means that patients hearing about these promising results are not able to volunteer to participate.
We must question whether it is ethical to make the vaccine available privately, due to these issues around affordability and access: is it reasonable to at least give some people the option to pay for it, or not? Will health insurance companies foot the bill, given this new data?
In the longer term, could the NHS afford to pay for such an expensive treatment?
The hope is that as the technology develops costs will fall, but how long will this take? Where will the Centres be that can offer the technique? Even the first step requires tissue taken from surgery to be flash frozen - something that is not universally available in all NHS hospitals.
Whenever trials publish such early stage data, we must ensure that they are not giving false hope and putting families into a situation where they have to go into debt or seek help from their communities through fundraising in order to access these potentially promising treatments, particularly when the data is hopeful but not yet clear.
This situation highlights even more strongly than before the necessity for increasing the funding available for brain tumour research: Recent funding announcements from the government and CRUK are encouraging but is still not enough. We urgently need to get UK-based trials open for patients that are at the cutting edge of new approaches. They must be given the opportunity, regardless of their financial status, to choose to get involved in clinical trials. Only then will such announcements provide realistic hope for the future.
We are engaging with pharma, bio-tech and the UK Government to get our questions answered.
To campaign alongside us please email campaigning@braintumourresearch.org