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Pancreatic Cancer Action Blog

Pancreatic cancer e-petition reaches it’s target – so what’s next?

e-petition thank youThe petition calling for more funding and awareness for pancreatic cancer ended this morning with over 105,000 signatures.  Thank you to everyone who signed, shared and pushed the petition.

Despite attracting only 20,000 signatures in the first six months, so many people have worked hard to push for signatures and, in the last week alone, we have seen over 30,000 people signing.  This is an amazing achievement.

Everyone has worked so hard to get to this stage so it is important we do everything we can to make the parliamentary debate happen.

 

Sadly 100,000 signatures doesn’t automatically mean that it will be debated in Parliament.

We need MPs to come forward and recommend the Backbench Business Committee holds a debate so that hopefully the issues surrounding pancreatic cancer: survival rates not improved in over 40 years and pitiful levels of cancer research funding relative to the disease burden,  will get discussed formally in the House of Commons. The process by which this happens is explained in the Backbench-Business-Committee-and-e-Petitions flowchart (click the link to download).

So, again, we are asking for your help!

Can we please ask that you write a letter to your MP as soon as possible asking them to help us ensure the debate happens. We have created a template letter for you to adapt and use if you wish,  which can be downloaded here: MP-template-letter Petition

If you are unsure who to write to, find your MP here.

It’s important that we get as many MPs as possible to support this.

Thank you for your help!

Pancreatic cancer petition reaches 100,000 signatures days before deadline

Maggie with her husband Kevin

Maggie Watts, who started the petition, with her husband Kevin, who died of pancreatic cancer in 2009

Tireless campaigning for signatures on an e-petition calling for more funding and awareness for pancreatic cancer has resulted in the target of 100,000 being reached, just days before the deadline on 8th April 2014. 

Pancreatic cancer patients, and families and friends of those who are suffering or have died of the disease, are celebrating this important milestone. The issue will now be considered for debate in The House of Commons.

Pancreatic cancer is the fifth biggest cancer killer in the UK.  Every day, 23 people are diagnosed with the disease and they currently face just a three per cent chance of survival, the lowest survival rate of all 22 common cancers.  The amount spent on research into the disease stands at just 1% of cancer research funding.  

Maggie Watts from Scunthorpe started the petition following the death of her husband Kevin, who lost his battle with pancreatic cancer in 2009 aged 48, 40 years after his mother died of the same illness.  Maggie said, “In the 40 years between Kevin and his mother’s death, the shockingly low survival rate of pancreatic cancer has not changed, while survival rates for many other cancers have improved significantly.  I was motivated to start the petition so that the government would dedicate more funds into research so that future patients will hopefully face much better prospects.”  

The rate of people signing the e-petition, which was launched in April 2013, was low in the beginning with it attracting only 20,000 signatures in the first six months.  Since then, the petition has gained significant momentum.  Maggie, along with many motivated people affected by pancreatic cancer and the charity Pancreatic Cancer Action pushed the petition in the media, on social networks and at awareness events attracting over 30,000 signatures in the final week.  

High profile support came from numerous celebrities on social media including Pancreatic Cancer Action patron Hugh Grant and Capital 1 DJ Simon Hirst, who both have a personal connection to the disease.  Julie Hesmondhalgh, who played pancreatic cancer patient Hayley Cropper in Coronation Street, has provided constant support to the e-petition campaign. 

Maggie adds, “The support from people has been astonishing and I would like to thank everyone who helped campaign for signatures as well as those who signed the petition.  I started a Facebook Think Tank group three months ago when we only had 30,000 signatures to ask for help in pushing the petition.  With so many proactive people coming together with ideas and determined to see 100,000 signatures, this gave petition numbers a real boost.”

Other events to drive more people to sign include a group of families and patients who raised awareness in Glasgow City Centre from an open-top bus, and successful petition crawl around pubs in Birmingham by the family of Kerry Harvey, a brave campaigner who died of pancreatic cancer at just 24 years old. 

Ali Stunt, CEO at Pancreatic Cancer Action, and a rare pancreatic cancer survivor, commented on the e-petition reaching this milestone: “So many people affected by this disease have put a lot of time and energy into reaching this target and I’m absolutely delighted that it has paid off. 

“Pancreatic cancer is finally getting the attention it needs, and this fantastic achievement is such great news following our recent advertising campaign, which raised widespread awareness and captured the attention of broadcast, national and regional media.

“The disease has been little known and chronically underfunded for too long,” continues Ali.  “The fact that 100,000 people have signed this petition shows how many support the need for change.   With the recent news that overall cancer research funding by government in the UK dropped by £19 million between 2012 and 2013, and when we consider the already tiny amount that is spent on pancreatic cancer research, it is vital that this issue gets debated in parliament soon.”

To sign the petition before the deadline, please visit: http://epetitions.direct.gov.uk/petitions/48389

To find out more about pancreatic cancer, please visit www.pancreaticcanceraction.org or call 0303 040 1770

 

 

 

Just 5 days to go!

With just 5 days left of the e-petition we still need everyone’s help to reach the 100,000 signature goal.

Please share these posters anywhere and everywhere you possibly can!

Also don’t forget that you can use our e-mail template to send out to your friends.
The last few days the petition has been trending at 100-300 an hour, which is great. We need to keep this up and soon enough we will have the 22,000 signatures we need.

Thank you x
Keep thinking purple for kerry harvey without bleed

 

QR code petition

Abraxane included on Cancer Drugs Fund list

Pancreatic cancer has suffered from chronic underfunding for pancreatic cancer research, which has meant that there has been no newly licensed drug which has shown a significant survival advantage for use in pancreatic cancer for almost two decades.

We therefore welcomed the news last week that nab-paclitaxel (brand name Abraxane®) has been approved by the Cancer Drugs Fund as a treatment for metastatic (cancer that has spread to other parts of the body) pancreatic cancer. The committee have listened to us and come to the correct conclusion – that eligible NHS patients in England will have access to this novel therapy.

Abraxane, in combination with gemcitabine has, in clinical trials shown to increase survival by two months on average, but some patients in the trial have benefitted from up to two years’ survival. This is very encouraging for advanced pancreatic cancer patients.

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The tireless of work of many to campaign for this approval has paid off.  This included a letter of appeal to Health Secretary, Jeremy Hunt written jointly by Pancreatic Cancer Action and Pancreatic Cancer UK and signed by Members of Parliament. Ali Stunt our Chief Executive attended the Cancer Drugs Fund meeting on March 6th to support the application to have Abraxane® included on the list. Of course, our recent advertising campaign – the very first of its kind in the world has significantly lifted the profile of pancreatic cancer in the UK.

Historically, there has been very little hope for pancreatic cancer patients with most surviving for only 4-6 months from diagnosis. Additionally, significant underfunding for pancreatic cancer research has meant that there has been very little in the way of improvements in survival for these patients for decades. Therefore, it is only right that eligible patients should have immediate access to this medical advance.

It has been suggested by many people who we have spoken to since the decision was made that our “I wish I had…” advertising campaign leading up to the Cancer Drugs Fund (CDF) hearing helped Abraxane® achieve inclusion in Cancer Drugs Fund list this time round. The scoring system the CDF uses rated Abraxane® exactly the same this time as it did when the first application to have it included on the CDF list was refused mid-2013.

The CDF committee could not have failed to have seen the launch by Pancreatic Cancer Action of the most successful advertising campaign for pancreatic cancer ever  in the lead up to the meeting.  Due to the nature of the campaign, which saw real pancreatic cancer patients wishing for a cancer with a higher survival rate, the story was picked up by TV, radio and almost every national newspaper.  Interviews with pancreatic cancer patients, discussions on radio and social media conversations highlighted the issues about pancreatic cancer – globally. 

The outcome of the CDF decision is brilliant for all patients and we at Pancreatic Cancer Action are so pleased that eligible patients in England now have this option to enhance their lives, from two months to, in some cases, over two years. 

What we would like to see now is approval of Abraxane® for metastatic pancreatic cancer by the Scottish Medicines Consortium, NICE and, AWMSG (Wales), NCPE (Republic of Ireland) so all eligible patients across the UK and Ireland will have access to this drug.

 

Information Standard Audit

Booklet 1 imageWe are delighted to report that we have passed another Information Standard audit with flying colours! In fact there were no issues found in any of the areas we were assessed on and scored green (the top mark) every time.

This is not a mean feat as the Information Standard is a rigorous scheme under which we need to demonstrate we have the policies and procedures in place to ensure that our public health information is up-to-date, evidence-based, unbiased and trustworthy.

Our new patient information booklets have been produced under the Information Standard scheme and are available to order free of charge for the general public in the UK and also we will send out to hospitals and medical information centres. For overseas orders, please call us on 0303 040 1770 for a shipping quote.information-standard-member-logo-positive_full

Booklets in the series include:

Understanding Pancreatic Cancer Booklet 1: What is pancreatic cancer and how is it diagnosed?

Understanding Pancreatic Cancer Booklet 2: Surgery for operable pancreatic cancer.

Understanding Pancreatic Cancer Booklet 3: Treatments for controlling the symptoms of pancreatic cancer

Click on the link for more information on the pancreatic cancer information booklets currently available.

To order yours, complete the form below.

Pancreatic Cancer Action publications order form

Our pancreatic cancer patient information publications have been certified under the Information Standard. We will supply these free of charge to addresses in the UK. Outside the UK please call +44(0)303 040 1770 or email enquiries@panact.org for a shipping quote. Please be aware that all statistics and healthcare information relates to the UK.
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The views expressed in this blog are the authors' own.