It was announced last month that more people are seeking to fund their treatment through crowdfunding than ever before.
The figures are quite staggering, with year on year comparisons 2015 to 2016 showing a near £4 million increase in total amount of money raised and over seven times as many appeals.
But why are people so keen on doing this? It could be that the Early Access to Medicines Scheme (EAMS) is failing.
Introduced in 2014, it was designed to speed up the process for patients with life threatening conditions to access medicines when they do not have a marketing authorisation and there is a clear unmet need.
We live in a time when promising trials and future treatments are now public information that anyone can find readily and on which they can pin their hopes of, if not a miracle cure, than at least a little more time and a higher quality of life.
The EAMS was surely designed for this exact scenario, where patients with low chances of survival from conventional therapy can adopt a more risk-inclined approach.
EAMS was supposed to make the NHS more reactive than ever before. An institution known for its glacially slow moving nature, despite its dedicated and expert members of staff, now has this scheme which actually just highlights that even when it is trying to move quickly, it doesn’t.
The NHS England responded to the news of the increased crowdfunding in a typically weak and lacklustre fashion by stating some largely irrelevant facts about how more people than ever are surviving cancer thanks to improved NHS Care and that they have launched new ways for promising cancer drugs to enter the system quicker.
That’s not much help to those with a six month prognosis.
One of the founding principles of the NHS, enshrined on the day was it was launched, was “that it meet the needs of everyone”.
But as needs have evolved I am not sure the NHS has kept up with them.
The shifting trend for more people trying to find treatment themselves only reemphasises this.
If people are willing to take larger risks with their treatment then they should be allowed to do so, and they should be assisted with this process through the NHS.
There is no doubting that appropriate safeguards should be put in place, and when a safe and effective treatment has been found for a particular condition, then that is what should be offered, but when no such treatment exists should people not be allowed to access promising, legitimate treatment even if they ultimately end up not gaining?
This is not about crackpot theories either, but carefully selected options which show very early stage promise. It’s about empowerment not endangerment.
One consultant reacted to the news of the increased crowdfunding by commenting, “It is therefore very worrying to see this trend of crowdfunding for cancer drugs…I worry that some patients may be trying to access treatment that may not be beneficial.”
Though this completely misses the point of why people are doing this and why they should be allowed to do so. This isn’t about the success and failure of treatment, this is about the right to access what people want and the processes in place slowing it down.
With the third anniversary of the scheme coming up, why doesn’t the NHS use this opportunity to review the success and failure of EAMS over the last few years and seek ways to improve it?
In the process of doing this they should read the heart rending stories on these crowdfunding pages.
Rather than dismissing those stories, work with the people behind them to design a system that will alleviate the need for those crowdfunding pages, embedding a more responsive culture within the NHS.