Access to drugs
We believe that patients, no matter where they live should have access to drugs that treat pancreatic cancer which have been approved by regulatory bodies such as the European Medicines Agency (EMA).
Pancreatic cancer survival rates have not changed in nearly five decades and, aside from late diagnosis, much of this can be attributed to the lack of treatment options for patients.
In 2013, a new drug was newly licensed for pancreatic cancer. It was the first to offer a significant survival advantage in nearly 18 years. However, the NHS in England has decided not to fund it on grounds of cost. Patients in Wales and Scotland are able to routinely access it on the NHS.
We are concerned that there is huge variation in the ability of patients across the UK to access any new drugs to show promise for the disease, resulting in inequality in treatment which in turn could lead to inequalities in survival across the UK. This is unacceptable and unfair.
What do we need to see?
We believe there should be a drug appraisal system in the UK that, where drugs that are innovative and where clinical benefit is demonstrated, should consider pancreatic cancer as a disease of unmet need and apply more flexible criteria to their cost-benefit analyses so drugs can be approved for routine use by patients on the NHS. Currently, the one-size–fits-all approach is preventing these innovative treatments from reaching patients in certain parts of the UK.
We believe that:
- All patients with pancreatic cancer should have access to the latest and best treatments no matter where they live.
- The drug appraisal system needs to be consistent across the UK and there should be collaboration between all UK governments, bodies such as NICE, Scottish Medicines Consortium, All-Wales Medicines Strategy Group, the pharmaceutical industry, and patient groups and charities (such as Pancreatic Cancer Action) when making decisions about whether to approve a drug for funding on the NHS
- More attention must be paid to the viewpoint of the patient in the decision making process
- Drugs should be fairly priced so they are affordable to the NHS but also allows the pharmaceutical industry to make a return on their investment in drug design.
- Current systems of drug evaluation and appraisal in the UK are clearly not working and we need to develop more appropriate methods to ensure that pancreatic cancer patients can be secure in the knowledge that they are able to access the latest and best treatments for their disease – no matter where they live.
How we campaign for fair access to latest treatments:
- We have actively campaigned in the media for fair access to treatments for pancreatic cancer with our CEO and Founder, Ali Stunt appearing on Sky News, Channel 4 News, BBC Breakfast, ITV news, Regional TV news stations (BBC and ITV) and multiple radio stations across the UK.
- Pancreatic Cancer Action is a registered stakeholder of the National Institute for Health and Care Excellence (NICE) for technology appraisals in England. In Northern Ireland, Scotland and Wales we engage with the Scottish Medicines Consortium and All Wales Medicines Strategy. We respond to all Technology Appraisals relating to treatments for pancreatic cancer working with clinicians and other charities to submit written evidence and ensuring we put across the patient viewpoint.
- We have developed online government petitions for access to drugs attracting nearly 40,000 signatures.
- We are a key stakeholder for the All Party Parliamentary Group on Pancreatic Cancer at Westminster, we have informed MPs, Lords, government ministers and senior officials about the importance of access to the latest treatments for patients.
- We have responded to the Government’s consultation on the Cancer Drugs Fund
How you can help
- Currently, the drug that is currently under evaluation in England (NICE) is Abraxane. If you have experience of using Abraxane, please get in touch to share your story with us. Real patient experiences can influence change and can bring a personal perspective to those evaluating drugs for routine use on the NHS.
- Write to your MP – We have a tool to help you find your local representatives to tell them how unfair it is that patients in England are unable to access a drug that is routinely available in the rest of the UK. If you need local statistics to help with the argument in your constituency, we can help provide them for you.
- If you are struggling to access Abraxane or any other drug(s) to treat pancreatic cancer and you feel you should be able to, please get in contact, and we will try to support you.