Vital Funding for Drugs - Share the Petition!

Tackle Prostate Cancer is one of 19 cancer charities working together to campaign and lobby for better treatment and access to drugs.  As a coalition, we are trying to have NHS England and NICE reconsider their plan to cap drug treatment costs.   One of the actions we have taken is to try and get as many people as possible to sign a petition to stop this proposal.  The petition has been developed by Prostate Cancer UK on behalf of all our charities. 

We urgently need your help, to persuade NHS England and the National Institute for Health and Care Excellence (NICE) to reconsider plans that threaten to have a devastating impact on men fighting prostate cancer in the future.

What we know

The plans would mean NHS England can indefinitely delay access to any new treatment which doesn’t fit under its proposed cost cap. This means that breakthrough treatments for advanced prostate cancer such as enzalutamide and abiraterone may have been delayed for years, arrived in the NHS too late for the thousands of men whose lives they have extended, or never have arrived at all. We are seriously concerned for the treatments of the future, which is why we need you to sign our petition.  

Help us fight for change

Although we recognise the significant financial challenges facing the current system, this is not the solution. NHS England and NICE need to hear this is unacceptable for patients and come up with a proposal that makes sure patients get the drugs and treatments they need, when they need them. 



Accentuate the Positive!

New research suggests that keeping a positive mental attitude is important in surviving cancer. The study shows that people who are anxious or depressed are far more likely to die from the disease.

As Tackle trustee Hugh Gunn commented: "I could not agree more! How else could I have turned a prognosis of 18 months into 11 years".

Read the full story here and stay positive!

Putting the Patient Perspective

A key part of our campaigning is to put the patient perspective.

Keith Cass, Tackle Trustee, has been doing that recently. He was a member of the independent panel reviewing how local health boards in Wales carry out Individual Patient Funding Requests (IPFR). Keith provided the patient perspective. You can read and download the full report here.

Keith's important contribution was recognised in a letter of thanks from Vaughan Gething AM,  the Welsh Cabinet Secretary for Health, Well-being and Sport which you can read here.


BBC Radio 4 Inside Health Programme on Prostate Cancer

For anybody that missed this show, you can catch it up here.

Merits of PSA Testing

Medscape reports that, "although about two fifths of all of physicians (42%)...said they believe the prostate specific antigen (PSA) test is overused, a huge majority (90%) said the benefits of the test always, often, or sometimes outweigh the risks, and many frequently recommend a baseline diagnostic for their male patients".

One oncologist, James Benton, MD, said screening is not the issue. "It is what one does with the information that is the real issue," he said. "Medical bureaucrats should not be the arbiters of decisions to screen or not screen," said Dr Benton, adding, "A man in conjunction with his family and doctor should have an unobstructed right to know if he has a cancer and make an informed decision as to how he will proceed with various treatment options ― from active surveillance, radiation, or surgery."

Read the article in full here.




90% of men receiving curative treatment for prostate cancer say their care was very good

Ninety percent of men who had surgery or radiotherapy to cure their prostate cancer in the English NHS rated their care as 8 or above on a scale ranging from 0 (“very poor”) to 10 (“very good”) according to the third annual report of the National Prostate Cancer Audit (NPCA) published by the Clinical Effectiveness Unit at the Royal College of Surgeons today. The audit is commissioned by the Healthcare Quality Improvement Partnership (HQIP) as part of the National Clinical Audit Programme.

Prostate cancer is the most frequently diagnosed cancer in men and the third most common cause of cancer-related mortality in the United Kingdom, with about 40,000 new cases each year resulting in 10,000 deaths. The NPCA audit looks at whether NHS services in England and Wales for men diagnosed with prostate cancer meet recommended standards.

In its third year, the NPCA investigated the care men received following a diagnosis of prostate cancer between April 2014 and March 2015 in the English NHS. The report also contains the first preliminary results for men diagnosed in Wales between April 2015 and October 2015.

The audit found four out of five men reported that their views were taken into account, that they had been involved when decisions about their care were made, and that they were given the contact details of a clinical nurse specialist who would support them through their treatment. These results were based on just over 5,450 responses to a survey that was mailed to all men who had had curative treatment 18 months after their prostate cancer was diagnosed.

The survey also showed that many men reported poor sexual function as a side-effect of their curative treatment. However, urinary incontinence, which is another possible side-effect of the treatment, was reported by most men as a much less severe problem.  In response, the audit recommends that all men who have side-effects of prostate cancer treatment should have early and ongoing access to supportive specialist services.

Professor Heather Payne, NPCA Oncological Clinical Lead, representing British Uro-oncology Group, said:

“The National Prostate Cancer Audit demonstrates that men with prostate cancer who have curative treatment report a good experience of the care that they receive.

“It is welcome news that men report that they are involved in the decision- making process with regards to their management. It is also reassuring that the majority of men have access to a specialist nurse who plays an important role when these decisions are being made and later will provide further support after the treatment is completed.”

The audit also demonstrates that in England the percentage of men with locally advanced prostate cancer who undergo curative treatments with surgery and/or radiotherapy continues to rise.  This percentage increased from 27% between 2006 and 2008 and 47% between 2010 and 2013 to 61% in men diagnosed between April 2014 and March 2015. The increased use of these therapies in men with locally advanced cancer is in line with national guidelines.

Professor Noel Clarke, NPCA Urological Clinical Lead, representing British Association of Urological Surgeons, said:

“It is very encouraging to see that the number of men with locally advanced prostate cancer (prostate cancer that has a high risk of spreading but is still potentially curable) who receive curative primary treatment is still going up. We know that in particular healthy older men have the potential of a long-term cancer cure with multimodal curative therapies.”

In Wales, the NPCA commenced one year later than in England. As a consequence of this later start performance indicators reflecting how men with prostate cancer were being treated in the Welsh NHS are not yet available. However, preliminary findings demonstrate that the completeness of the data is excellent which reflects the crucial contribution that clinicians make to the collection of audit data in Wales.

Professor Howard Kynaston, NPCA Urological Clinical Lead in Wales, said:

“The high level of completeness of data collection that the Audit received for Welsh patients demonstrates that we have an unrivalled opportunity to evaluate cancer services provided to men with prostate cancer by the Welsh NHS.

“I look forward to seeing the results for key performance indicators that will inform how well the prostate cancer services provided to men diagnosed in Wales meet national guidelines.”

The NPCA is commissioned by the Healthcare Quality Improvement Partnership (HQIP) as part of the National Clinical Audit Programme in response to the need for better information about the quality of prostate cancer services in England and Wales.

The audit is based in the Clinical Effectiveness Unit (CEU) at the Royal College of Surgeons of England (RCS) and is led by clinical experts from the British Association of Urological Surgeons (BAUS) and the British Uro-Oncology Group (BUG). The National Cancer Registration and Analysis Service (NCRAS) manage the data collection in England and Public Health Wales does the same in Wales.

Tackle celebrates successful SMC campaign allowing Cabazitaxel in Scotland

Thanks to Tackle’s continued effective campaigning, NHS Scotland will now provide Cabazitaxel, a life-extending drug for advanced prostate cancer patients who need it. The drug is predicted to help almost 60 men, it is given when the cancer can’t be controlled by hormones and is taken after treatment with Docetaxel. Tackle’s campaigning has helped improve lives by getting Cabazitaxel back on the Cancer Drugs Fund and for use on NHS in England, as well as six more major approval advances.
Roger Wotton, Chairman of Tackle commented: “This is positive news for men in Scotland who now have the same access as other men in the UK to a life-prolonging treatment that increases their chance to live longer. Any extension of time a man with prostate cancer is able to get back to be with family and friends is highly important. The availability of Cabazitaxel (Jevtana) means men in Scotland now have an alternative effective treatment option. Likewise, physicians now have another effective medicine in their arsenal to treat patients.”  
 Hugh Gunn, trustee and lead campaigner for Tackle, thanks his own Cabazitaxel treatment for still being alive and well today: “This approval is particularly poignant as Tackle led the campaign and I myself have greatly benefited from accessing Cabazitaxel in England, otherwise I feel I would be very near the end of my life.”

Tackle Supports PCUK Erectile Dysfunction Campaign

Prostate cancer patients ‘abandoned to deal with erection problems alone’ - Prostate Cancer UK warns

Thousands of prostate cancer survivors affected by erectile dysfunction are being abandoned without adequate support, new Freedom of Information (FOI) data obtained by Prostate Cancer UK has revealed.

Today, the UK’s leading men’s health charity has issued a warning that patchy, insufficient care for erection problems is leaving men across the country with unnecessary long term physical and psychological damage, and is calling on the nation to take action by campaigning for better care in their area.   

Erectile dysfunction is a common side effect of prostate cancer treatment, affecting 76% of men who have been treated for the disease but it can often be treated if the right care is available.

However, the results of recent FOI requests issued by Prostate Cancer UKreveal a dramatic post code lottery of support with just 13% of local health commissioners across the UK providing the breadth of treatment and services needed to give men living with this challenging condition the best chance of recovery. These findings are reinforced by the results of a survey of over 500 men with erectile dysfunction after prostate cancer treatment,  in which as many as 1 in 4 (24%) men claimed no one offered them support or medication to deal with the issue.

John Robertson, Specialist Nurse at Prostate Cancer UK said; “When it comes to treating erectile dysfunction following prostate cancer treatment, early support and treatment is vital.

“As a specialist nurse, I regularly speak to men at rock bottom because they can no longer get or maintain an erection. Not only can it put a complete stop to a man’s sex life, it can have devastating longer term implications including depression and relationship breakdowns. It is therefore incredibly concerning that only a handful of men are getting the support needed to overcome this condition and it’s shocking that in some areas men aren’t getting any support whatsoever.”

It is the responsibility of commissioners (CCGs in England, Health Boards in Scotland and Wales and Health & Social Care Trusts in Northern Ireland) to bring about change at a local level. In a bid to put a stop to the wide disparity in care, Prostate Cancer UK is calling on the public to put urgent pressure on health funders in the worst performing areas to ensure they are held accountable for improving access to treatments and support.

Recent treatment guidance for erectile dysfunction produced by Prostate Cancer UK and Macmillan Cancer Support recommends early intervention and a choice of five treatment and support options in order to give men the best chance of recovery.  Treatment and support should include access to a NHS erectile dysfunction clinic, an appropriate choice of medication including daily low dose tadalafil (Cialis®), vacuum pumps, and access to psychosexual clinics and counselling services. Erectile dysfunction clinics are widely regarded as the most essential service, as they provide support across both physical and emotional needs and help men to understand what they should expect at each stage of their recovery. However, the FOI results revealed that only half (51%) of commissioners could confirm that they offer this as an option. Two commissioners admitted that they offer no support whatsoever and almost 1 in 5 (17%) were completely unaware of the arrangements in their area. 17 commissioners failed to provide satisfactory information for all questions raised in the request.

Robertson continued; “This is an issue that has been swept under the carpet for too long and thousands of men have been left to suffer in silence. Erectile dysfunction is a debilitating health condition and it must be taken seriously by the NHS and commissioning groups.  Now is the time to take action – everyone can do their bit to make sure men across the country get access to the vital support they need.”

Brian White from Leeds (42) was diagnosed with prostate cancer at the age of 41. He had an operation to remove his prostate in October 2015.

“My partner and I were made fully aware of the possible side effects – incontinence and erectile dysfunction, but at the time I was so focussed on getting rid of the cancer – the longer term implications didn’t really come into question.

“One year down the line and I’m still in remission but I’m living with the harsh side effects of my treatment. Thankfully my incontinence is much better but I’m still struggling with erections. I’m only 42 and my partner is 36. Sex and intimacy is so important to us, as it is to most relationships and adjusting to a different way of life has been incredibly difficult. The spontaneity of our sexual relationship has gone and now every intimate moment has to be planned well in advance.

“Things are certainly improving but the road to recovery is a long one. I want to make everyone aware that support for erectile problems shouldn’t be a ‘nice to have’ - it’s essential. Before any man undergoes treatment for prostate cancer he needs to be safe in knowledge that there is appropriate care on the other side to help him with the aftermath. The fact that some men don’t get access to any support whatsoever is shocking.”

To join the fight and campaign for better care for men in your area, visit: 

For further information on erectile dysfunction visit: or speak to Prostate Cancer UK’s Specialist Nurses on 0800 074 8383.

Members share their prostate cancer stories on BBC Breakfast

A number of our members - beginning with Tackle Chairman Roger Wotton - were shown on BBC Breakfast telling their prostate cancer story in twitter-sized takes. See them here.

The PSA Debate across the pond

The debate about PSA testing and national prostate screening programmes continues to be debated around the world. Tackle welcomes thie latest contribution from across the pond which challenges current guidelines over there and makes a strong case generally for a prostate cancer screening programme. See the debate on Fox News here.

Tackle commends Ben Stiller for sharing his prostate cancer experience

We commend Ben Stiller for sharing his experience of being diagnosed with prostate cancer. Thanks to a wise and informed clinician, he has been saved from joining the ever increasing ranks of men diagnosed with advanced and incurable prostate cancer, which is partly as a result of the continuing misinformation and negative publicity about the PSA Test. This is exemplified by the ill-informed recommendation from the US Preventative Services Task Force (USPTF) that the test should not be offered to asymptomatic men. Well-informed clinicians (such as Mr Stiller’s) wisely ignore this recommendation, but it still has great influence over those clinicians not expert in the field, or do not have the time to read up and understand this complex problem.

No man was ever harmed by knowing his PSA. The harm, if it comes, used to come from what clinicians do with the results. But the rush to invasive diagnosis and over-treatment common in the last century is rarer these days as an intelligent, informative and risk-based approach is adopted in most centres. Examples of this are increasing use of MRI before biopsy, and the adoption of Active Surveillance as a management regime for low risk disease. What is important to point out is that all these techniques depend on an initial PSA test.

If PSA testing of asymptomatic men were to be stopped (as the USPTF would wish) the vast majority of men who develop prostate cancer would present with later stages of the disease that has spread beyond the prostate, and in most cases they would die from it.

ProtecT trial results add more grist to the PSA screening mill

Chris Booth, a member of Tackle's Clinical Advisory Board, has been studying the results of the ProtectT trial and observes as follows:

Despite major advances in treatment over the 10 year course of this study, the death rate from prostate cancer (PCa) in the UK remains at a highly unsatisfactory 11,000 each year.

Over this time men with early stage, non-aggressive PCa and more than 10 years’ life expectancy have routinely been offered active surveillance as an alternative to radical surgery or radiotherapy.  This trial has confirmed the safety of active surveillance.

Does the trial prove anything else or suggest changes in future practiceUndoubtedly!

All the men in the trial had PSA screening detected cancers.  Over half initially on surveillance showed signs of progression and switched to radical treatment.  Presumably, without screening in the first place, these men would have presented with late stage, incurable disease and most likely added to our PCa death toll. This progression rate is not surprising given the limitations on the accuracy of standard TRUS biopsies during the trial period 1999-2009.  However, the results of the PROMIS trial of multiparametric MRI (mpMRI) now offers the hope of early recognition of significant cancer likely to progress whilst saving those with insignificant, non-aggressive cancers even the need for invasive biopsies;  a major reduction in “over-diagnosis”.  However, none of these benefits applies without PSA screening in the first place.

Does the trial have implications for PSA-based screeningObviously!

Only 8% of eligible UK men undergo PSA screening compared with 60% in most Western countries.  This alone probably contributes most to our high death rate.  PROMIS and ProtecT now confirm that current UK clinical practice has both the tools and the method to avoid the twin bogies of screening – “over-diagnosis” and “over-treatment”.

Given that organised screening trials in Europe are delivering a 40-50% drop in mortality from PCa, we should surely now put our efforts into increasing our lamentable screening rate if we are to reduce our death rate.  Indeed, with all the main urological associations worldwide supporting appropriate PSA-based screening and in the face of all this new evidence, it is simply not good enough for Dr Anne Mackie of the UK National Screening Committee to continue to trot out the mantra that PSA screening in the UK today “would do more harm than good”.  Where is the proof of that against all this new evidence?

Save a Dad!

Tackle Chairman Roger Wotton has welcomed a new initiative called "Save a Dad!" by Tackle member Leighton Hospital Support Group together with a school in Crewe and commented "Who can argue with “Save a Dad!”  It is encouraging to see the next generation learning about prostate cancer.  Kids talking to dads is another way of raising awareness! We really hope that this could become something that every school in the country would get involved with as it would dovetail well with Tackle's campaign to "get a score on the board"."


"NICE" campaigning by Tackle helps more men access life-extending drug Radium-223

The National Institute for Health Care Excellence (NICE) today publishes draft guidance for life-extending drug, Xofigo® (radium-223 dichloride) now allowed for men with castration-resistant prostate cancer, symptomatic bone metastases and no known visceral metastases where docetaxel is contraindicated or is not suitable. Due to Tackle’s help in campaigning throughout the approval process, this medicine is now made available to a larger group of men who have not taken docetaxel and for men in Wales who aren’t suitable for docetaxel.

Hugh Gunn, Trustee, commented: “Tackle Prostate Cancer is delighted that NICE have relaxed the ruling on Radium-223, which was only previously available to patients who had already received the chemotherapy drug docetaxel.  NICE have announced today that it can now be given to patients irrespective of whether they have received docetaxel, providing there is no visceral (soft tissue) metastasis.

This is a welcome and sensible improvement that Tackle has worked hard to achieve and it will greatly benefit prostate cancer patients who have limited treatment options open to them.”

Tackle successfully continues to campaign, making more medicines available for prostate cancer patients, giving vital lifelines to men with limited treatment options.

Urologists commit to introduction of MRI scans before biopsy

At the annual conference of the British Association of Urological Surgeons' (BAUS) annual conference in June, Prostate Cancer UK reports that there was agreement "mpMRI could benefit men and want to see it happen, agreeing this needs to be in a controlled and consistent manner. It was also great... to receive a commitment from BAUS and the urologist community ... in making sure that roll out of pre-biopsy mp-MRI is made possible within the correct parameters".

Tackle has been at the forefront of calling for MRI scans before biopsy. As one delegate commented at our conference in June this year to great applause: "Biopsy without MRI is butchery".

You can read PCUK's full report here.

Cancer Drugs Fund - the latest

According to the NHS, the latest changes to the Cancer Drugs Fund (CDF) will "provide patients with faster access to the most promising new cancer treatments". Most existing prostate cancer treatments are already included - and Tackle has been at the forefront of campaigning on your behalf to ensure they are.

Sounds promising! But the NHS have only a finite amount of money available. Concerns have been expressed that pharmaceutical companies have been overcharging and, in order to try to prevent this occurring, the NHS plans to offer "those pharmaceutical companies that are willing to price their products responsibly, a new fast-track route to NHS funding for the best and most promising drugs via an accelerated NICE appraisal process and a new CDF managed access scheme".

What this means in practice, therefore, is that if the NHS can't reach agreement with a pharma company on price, the drug/treatment won't be approved and patients will lose out.

Whilst we understand that finances are limited, we urge NHS to put patients first and prevent unnecessary suffering.

You can read the full NHS England document about how the CDF will operate here.

Latest Surveys Reveal both Good News and Bad News about Prostate Cancer

First, the bad news from two recent studies.  Prostate Cancer (PCa) remains the commonest cancer in UK men with 47,000 new registrations each year and it is the second commonest cause of cancer deaths at 11,000 each year.  Despite this a new survey conducted by the charity Prostate Cancer UK confirms that British men remain amazingly ignorant of this potential threat.  It showed that of 1,900 men questioned, 17% had never even heard of the prostate, 54% didn’t know where it was and 92% didn’t know what it did!  Couple this to a generally negative view of PCa screening held by many GPs and it helps explain why our death rate from PCa is poor compared with similar western countries.

A second worrying statistic from a new Northwestern Medicine study in the USA reports a national 72% rise in new cases presenting with advanced, incurable, metastatic PCa from 2004-13 with the largest increase in 55-69 year olds.  This is exactly the age group for whom there is an international consensus that Prostate Specific Antigen (PSA) screening should be targeted.

Over the past decade in the USA there has been a substantial reduction in the number of men screened and the number of new cases has declined.  Though this alarming trend may not be solely down to lack of screening, it is clearly a major contributory factor.

The good news is that the latest screening trial results from Europe are showing that if you are in an organised PCa screening programme using the blood test PSA from your 50s onwards, you can cut your risk of death from PCa by 40-50%.  Furthermore, if you do have an abnormal PSA, increasing use of MRI scanning before invasive prostate biopsies greatly improves our ability to decide whether a biopsy is necessary and if it is, greatly improves the accuracy of the procedure.  This leads on to an avoidance of unnecessary treatment for many harmless cancers and ensures better identification for early curative treatment for the dangerous ones.

There is more good news for men diagnosed with PCa.  Many such patients ask what they themselves can do to help combat the cancer.  There is some evidence to suggest certain diets may help but nothing else till now.  A research team from Atlanta, Georgia, led by Dr Ying Wang has shown that in 10,000 men with PCa that had apparently not spread elsewhere at the time of diagnosis, exercise reduced subsequent PCa mortality.  Those doing more than 17 hours exercise per week before their diagnosis reduced their chance of death from PCa by 30%.  Also, very encouragingly, a 34% reduction occurred in men who only started to exercise after their PCa had been diagnosed!  Walking was the main type of exercise but the maximum benefit was seen in men with a varied exercise regime such as gym work and swimming.

 All this information continues to point to the need for UK men to become much more aware much earlier about what can go wrong in the future.  It also means our GPs, upon whom PCa screening depends, need to be supplied with up to date evidence from trials and best clinical practice so that they can provide sound counselling and allow their patients to make informed decisions for their future health.

NB:  If you have a family history of PCa or breast cancer on your mother’s side OR if you are a black African or African Caribbean man, you may have a much higher risk of PCa and need to discuss being in a screening programme.

National Prostate Cancer Audit Annual Report 2015

The National Prostate Cancer Audit (NPCA) is the first national clinical audit of the care that men receive following a diagnosis of prostate cancer. It is designed to collect information about the diagnosis, management and treatment of every patient newly diagnosed with prostate cancer in England and Wales, and their outcomes.

The preliminary results from the most recent 2015 Report show that:

"About half of newly diagnosed men were over 70 years of age and about two thirds were in good health. Most men were of white ethnic origin (94%) and men living in more socioeconomically deprived areas were underrepresented with only 13% from areas within the most deprived quintile.

45% of men with available data had a PSA level less than 10 and 32% had a PSA level higher than 20. Prostate cancer disease status could be determined for 59% of included men, 9% of whom had advanced (metastatic) disease, 31% locally advanced disease, 19% either locally advanced or advanced disease (insufficient information to determine their metastatic status), 34% intermediate-risk disease, and 7% low-risk disease.

Transrectal ultrasound was the predominant biopsy technique performed before treatment for 85% of men. Multiparametric MRI was recorded in only 21% of men with about half of these performed before biopsy.

Just over half of patients (53%) with newly diagnosed prostate cancer had at least one treatment recorded as agreed at MDT. This included radical prostatectomy in 20% of cases (50% of which were recorded as robotic-assisted laparoscopic procedures) and radical radiotherapy (EBRT/ brachytherapy), cryotherapy or HIFU in 29% of cases".

The NPCA is managed as a partnership between a team of clinical, cancer information and audit experts from the British Association of Urological Surgeons, the British Uro-oncology Group, the National Cancer Registration Service and The Royal College of Surgeons’ Clinical Effectiveness Unit.

Letter to the Prime Minister

Tackle has joined fifteen other leading UK cancer charities today to call on David Cameron to urgently review the National Institute for Health and Care Excellence (NICE) appraisal process for new medicines with thousands of patients now at risk of missing out on clinically-proven cancer drugs.

In an open letter to the Prime Minister – published today in The Daily Telegraph – the heads of leading cancer charities warned of their ‘deep concern’ that plans to leave the NICE appraisal methodology unreformed will soon lead to new effective cancer medicines struggling to gain approval.

The Government’s latest proposals will also see the Cancer Drugs Fund’s (CDF) assessment of medicines handed back to NICE. Ultimately, this means that new drugs will now be assessed for use on the Fund by the same system – originally introduced back in 1999 – that failed to make clinically-proven drugs available to NHS patients and led to the CDF being established as a temporary measure in the first place.

Outlining their key concerns ahead of the launch of the new Cancer Drugs Fund, the 16-charity coalition said: “We need a sustainable system, flexible enough to ensure that the best cancer drugs can routinely benefit NHS patients… please do not allow the assessment of cancer drugs to be consigned to a last-century methodology.”

In 2011, the Coalition Government promised to “reform NICE… so that all patients can access the drugs and treatments their doctors think they need[i]”, setting up the CDF to allow patients access in the short term. This followed several high-profile rejections of effective cancer drugs for use on the NHS.

Having severely overspent its budget in recent years, NHS England and NICE launched a consultation on the future of the CDF in late 2015. But despite overwhelming feedback from patient-representative organisations that further reforms would be needed to ensure that NHS patients have access to effective cancer drugs, virtually no changes were made to the original proposals.

Ahead of the publication of the Accelerated Access Review this summer, the Government has a final opportunity to fully re-consider the drug appraisal system and include all stakeholders in an open dialogue about how to give NHS patients access to effective medicines when they need them.

Among options for reform are the possibilities of giving the system the flexibility for price negotiation – used successfully elsewhere in Europe – or of enabling patient experience to play a more significant role in final decision-making on a drug.

Thanks to significant research progress, scientists are developing more personalised medicines and promising combination therapies, but these advanced new treatments are likely to struggle for approval unless the current appraisal mechanisms are reassessed and reformed.


The letter, dated Wednesday 4th May 2016, reads:

Dear Prime Minister,

Re: The Future of the Cancer Drugs Fund and NICE reform

As a coalition of 16 cancer charities, we know of your personal commitment to the Cancer Drugs Fund (CDF), which has benefited 84,000 families since 2010. But, having seen plans for its long-awaited successor, we are deeply concerned by the lack of reform proposed to the wider NICE process of appraising cancer medicines.

Unfortunately the new system does not update the methodology used by NICE, introduced back in 1999, and many clinically-effective treatments will now struggle to gain approval. We must not forget the CDF was established as an emergency measure to bypass the very NICE appraisal process to which it is now returning because it was not working for cancer patients.

At this late stage, we urge you to intervene and commit to a review of the outdated mechanisms used to assess cancer medicines. We need a sustainable system, flexible enough to ensure that the best cancer drugs can routinely benefit NHS patients. As the Prime Minister who introduced the CDF, we believe that you want these things as well – please do not allow the assessment of cancer drugs to be consigned to a last-century methodology.

Yours sincerely,

Mark Flannagan, Chief Executive at Beating Bowel Cancer

Cathy Gilman, Chief Executive at Bloodwise

Deborah Alsina, Chief Executive at Bowel Cancer UK

Samia al Qadhi, Chief Executive at Breast Cancer Care

Baroness Delyth Morgan, Chief Executive at Breast Cancer Now

Jane Lyons, Chief Executive at Cancer 52

Laura Courtney, Head of Policy and Public Affairs at CLIC Sargent

Monica Izmajlowicz, Chief Executive at Leukaemia Care

Louise Bayne, Chief Executive at Ovacome

Alex Ford, Chief Executive at Pancreatic Cancer UK

Karen Stalbow, Head of Policy, Knowledge and Impact at Prostate Cancer UK

Dr Jesme Fox, Medical Director at Roy Castle Lung Cancer Foundation

Lindsey Bennister, Chief Executive at Sarcoma

Rowena Bartlett, Chief Executive at Tackle Prostate Cancer

Anwenn Jones, Chief Executive at Target Ovarian Cancer

Sarah Lindsell, Chief Executive at The Brain Tumour Charity

Prostate Cancer Multi-Disciplinary Teams - The Way Forward?

People with cancer need their care managed by a team of specialists who work together and learn and improve together.

Simon Crompton reports in CancerWorld on efforts to achieve such a collaborative approach in delivering prostate cancer care.

Read about it here.

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