Key to Survival campaign
We want to make sure all pancreatic cancer patients in the UK can access more new effective treatments on the NHS to help them live longer and improve their quality of life.
Why are we calling for better access to treatments?
Very few treatment options currently exist for pancreatic cancer patients and survival rates are shockingly low, with less than 7% of people living for five years or more after diagnosis. These survival rates have barely changed in 40 years.
New treatment options are urgently needed to improve survival and quality of life, and to give pancreatic cancer patients and their families more precious time together.
How will Key to Survival help?
We will use Key to Survival to call for changes to be made that will foster an environment where more new treatments for pancreatic cancer can be researched and trialled and, if proven to be effective, approved for use on the NHS across the UK.
Our Key to Survival goals are:
- Unlocking access to new treatments
Campaigning to change how decisions are made about which new treatments are funded by the NHS. We need to make sure that as soon as effective new treatments become available for pancreatic cancer they are funded on the NHS for patients across the whole of the UK.
- Unlocking access to current clinical trials
Helping patients make informed choices about clinical trials through increased awareness and support. We need to make sure that more patients are aware of their treatment options in order that they can take part in trials if they choose to.
- Unlocking more clinical trials for the future
Calling for changes that will improve the quality and quantity of pancreatic clinical trials. We need to work with others to ensure that we create an environment in which more, and more effective clinical trials can be carried out in the future.
Find out more about our campaign and how we are tackling these goals below.
In 2014, Abraxane, a new treatment for pancreatic cancer patients, was licensed for use in the UK, but then subsequently withdrawn.
The decision by the National Institute for Health and Care Excellence (NICE) not to approve Abraxane for use in England (guidance which was also followed in Northern Ireland), was a bitter blow. Thankfully, in August 2017, after years of campaigning with the help of the charity's supporters, NICE reversed their decision and made Abraxane available on the NHS in England again.
Despite this positive development, people with pancreatic cancer are still being denied access to other beneficial treatments, so we are calling for changes to the way new drugs and other treatments are assessed by NICE. We want to make sure that the next time a new effective treatment option for pancreatic cancer becomes available, patients will be able to access it on the NHS across the whole of the UK as soon as possible.
We are urging NICE and NHS England to change the way they review new treatments, so that the system works better for patients with pancreatic cancer in future. Specifically we have called for:
1. NICE to introduce a new, separate assessment route for rarer cancers, and cancers with the worst survival rates like pancreatic cancer.
2. NICE Technology Appraisal Committees to take into account the relative survival gain offered by a new drug if it is for cancers with extremely poor survival rates, like pancreatic cancer.
Patients with advanced pancreatic cancer – when the disease has spread to other parts of the body - survive just 2-6 months on average. So if a new drug comes along that can offer two extra months for those patients, it is, relatively speaking, a very significant amount of time for them and their families and NICE should have to reflect this in their decision making process.
3. An essential overhaul of the NICE appraisal system, to take into account much broader measures of quality of life and other potential benefits of new treatments to cancer patients, rather than just focussing on the costs and clinical benefits as recorded in a trial setting.
Whilst directly aimed at NICE and NHS England, these principles apply to other parts of the UK and the appraisal systems used there.
At the same time, when there are new treatments that show promise for pancreatic cancer patients, we will campaign to make sure they are made available on the NHS as soon as possible.
Whilst our Two More Months campaign – to get Abraxane approved for use across the whole of the UK – has succeeded, wider reform is still needed to ensure that more treatments become available.
For more details read our policy briefing on unlocking access to new treatments.
If we are going to see new treatment options for pancreatic cancer patients developed, there needs to be more research into the disease, more clinical trials set up, and more patients taking part in those clinical trials.
Improving access to clinical trials is about more than enabling breakthroughs for the future; it is also about making sure patients have more options for their care now. Research has shown that for many patients, taking part in a trial may offer them the best available care. Benefits can include having a new treatment not otherwise available or more regular check-ups leading to any changes in health being noticed sooner.
There can also be drawbacks to taking part in trials and we know taking part in a trial will not be the right option for everybody. But we believe all patients should be told about trials and then, if they fulfil the trial eligibility criteria and are well enough to take part, they can make an informed choice whether to participate in a trial or not.
We know that, currently, fewer pancreatic cancer patients take part in clinical trials than patients with other cancers. Only 436 (4.6%) pancreatic cancer patients newly diagnosed in a year, were recruited to trials recorded by the National Institute for Health Research (NIHR) Clinical Research Network in 2014/15.This number is far too low.
One reason for this may be because patients are often diagnosed late meaning they may be too unwell to take part in a trial. However, through talking to patients, carers and health professionals we found there are some other issues affecting recruitment levels including:
1. Patients not being given enough information about trials, and the pros and cons of taking part
2. Patients finding information about trials difficult to understand
3. Patients and Health professionals not being aware of which trials are open around the UK
4. Health professionals not always telling patients about trials
5. Financial, travel or other practical issues making it difficult for patients to take part in a trial.
In response to this, and to coincide with International Clinical Trials Day on 20th May 2016, we have launched new online tools and information for patients, carers and health professionals including:
* A Trial Finder –to make it easier for patients and health professionals to find out which pancreatic cancer trials are open across the UK
* Videos of patients and research nurses talking about what trials are, the benefits and drawbacks of trials, and what you might expect if you take part in a trial
* Short, easy to understand information on current trials.
We will also be:
1. Clinical trial sessions at our health professional training days
2. Supporting the ‘OK to Ask’ campaign run by the National Institute for Health Research (NIHR), which makes clear that patients should feel free to ask their clinicians about research and trial options that may be open to them
3. Informing patients of the practical and financial support that may be available to them from the Elizabeth Coteman Fund, which provides grants to cover the cost of travel and subsistence where distance can affect a patient’s/family’s decision to take part in a clinical trial. You can learn more about the Elizabeth Coteman Fund, and apply for grants, through their website.
4. Our Specialist Nurses are there for you, if you want to discuss any of these issues in more details on 0808 801 0707 or firstname.lastname@example.org.
You can also help us by sharing the link to our new online clinical trial resource on social media.
For more details about our work in this area, read our policy paper on unlocking access to current clinical trials and more trials for the future.
The third element of our Key to Survival campaign is focusing on unlocking more clinical trials in the future. In addition to trying to increase the number of patients taking part in the clinical trials that are open now, we also need to make sure that there are a greater number of trials set up in future and that these are accessible to patients across the UK. This is important to provide patients with more treatment and trial options as part of their care and also to increase the chances of new treatments being discovered.
We also believe that it is important that patients are told at the earliest opportunity about clinical trials so that they don’t undergo treatment that makes them ineligible to take part in a clinical trial. We are calling for an amendment to the NHS Constitution to support this goal.
We need to work together with the whole pancreatic cancer research community to make sure there is a wide range of trials available but also a strategic approach to the trials being set up so that we can make the breakthroughs in treatment and care that we desperately need for pancreatic cancer.
This will involve campaigning for:
* a greater focus on pancreatic cancer research funding and infrastructure
* calling for more hospitals to take part in pancreatic cancer trials, supported by specialist centres
* helping make sure that patients and carers are more involved in designing trials so that they better reflect patients’ needs
* making sure that we have the infrastructure needed in place such as tissue collection and data-sharing to make advances in precision and personalised medicine
* ensuring that we have a positive and collaborative culture where researchers and healthcare professionals work together to undertake research and clinicians have confidence in the trials taking place and want to refer patients to them..
For more details about our policy calls on clinical trials and the evidence to support these read the policy paper here