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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.

Tackle Supports Concert in aid of Prostate Cancer Awareness

Tackle has been supporting cancer specialist Professor Nick James and drummer John Hoo who have joined forces to highlight that prostate cancer – the most common cancer in men – is twice as common in men of African origin, who once diagnosed, are often twice as likely to die from it.

Their work together began back in November 2013 when Hoo organised a jazz concert at the University of Birmingham gathering together one of Britain’s most celebrated jazz artists Courtney Pine with local musicians.

They want to make men sit up and do something about it.

Read the full story here.

 

Response to Cancer Drugs Fund Review

This response has been developed collaboratively between Tackle and Prostate Cancer UK and includes the views of 52 men surveyed for their views on the proposals to reform the Cancer Drugs Fund (CDF).

It is clear that men with prostate cancer have benefitted from the CDF. In fact, thousands of men with this disease have had early access to life-saving new treatments, many of which have subsequently taken a long time to enter into routine commissioning. Without the CDF and with only NICE to rely on, many of these men would have been denied access to new treatments that have extended or improved their lives.

We cannot accept any reforms that return men to the pre-CDF world of repeated prostate cancer treatment rejections. Consequently, our response aims to highlight where we believe the reforms make this pre-CDF return likely. We also suggest ways that we think the proposals can be improved so that men have a greater likelihood of getting access to new treatments.

Read the full submission.

Tackle Takes Issue with the BMJ

"The British Medical Journal is a respected publication whose editorials and articles are considered to be authoritative. In so far as prostate cancer is concerned and with the BMJ’s power to influence opinion, its latest editorial “Full Disclosure About Cancer Screening” and analysis entitled “Cancer Screening Has Never Been Shown To Save Lives” are highly misleading due to outdated references used by the authors to support their case."

So says Chris Booth, writing on behalf of Tackle's Clinical Advisory Board, in his opening paragraph in response to the BMJ's recent editorial and article about cancer screening.

Read Chris' article in full here. If you agree with Chris, please Click to Like on that page.

 

 

Report on European Prostate Cancer Round Table Meeting

Chris Booth represented Tackle at a Prostate Cancer Round Table meeting in Brussels on 27 January 2016.

The meeting was attended by 47 delegates from around the EU and North America. The delegates came from a wide variety of backgrounds representing expert patient opinion, specialists in urology, oncology, radiotherapy and imaging, public health, research, pharma, technology and the European Commission.

Read Chris' full report here.

A Win for Tackle!

Judith Potts writes in The Daily Telegraph that NICE's change of heart was due in no small part to Tackle's campaigning.

As she says: "Thanks particularly to the work of Tackle, NICE has reversed its previous decision and will allow the hormone therapy drug enzalutamide to be used by the NHS, thus delaying chemotherapy for at least 17 months and giving patients a better quality of life. 

 
Up to now, the drug was available only after chemotherapy but this reconsideration – which was helped by the manufacturer,Astellas, offering a reduction in the cost – will benefit over 5,000 men each year.

Rowena Bartlett, CEO of Tackle, said: “Tackle is delighted that enzalutamide can now be given before chemotherapy, so that the true potential of it can be realised and men may be spared the rigours of other drugs.” 

Prostate Cancer Quality Standards

Working with other like-minded agencies, Tackle has been instrumental in drawing up quality standards to ensure all men with prostate cancer have a right to have the best possible care and support regardless of where they live.

2015 has been a busy year with Tackle submitting their nine "gold" standards to the national Institute for Clinical Excellence (NICE) and NICE publishing their five standards in response.

Tackle Chairman Roger Wotton has a co-authored an article published in the most recent edition of Trends in Urology and Men’s Health which rounds up the story and also features Dr Jon Rees explaining why NICE's standards are "complementary not competing".

For the full story, click here.

Prostate Disease Q&A with Dr Jon Rees

Dr Jon Rees, a member of Tackle's Clinical Advisory Board, talks about various aspects of prostate cancer including PSA tests and the importance of support groups in the Urology section of the Independent.

Men with prostate cancer worry more about quality of life issues than death

A new report released on European Prostate Cancer Awareness Day (16 Sep 2015), entitled Prostate Cancer: Living, not Just Surviving, which details findings from a survey of men with prostate cancer, caregivers and healthcare professionals, reveals that UK men living with prostate cancer (n=103) are more likely to worry about quality of life issues - such as intimacy problems with their partner (43 per cent) and the practical impact on their family routine (36 per cent) - than dying (27 per cent).1

The report, developed by Janssen in collaboration with pan-European and national patient associations including the UK’s Prostate Cancer Support Federation (Tackle Prostate Cancer), explores the everyday impact of prostate cancer in ten European countries, and suggests that for UK men who experience chronic physical effects from the disease, fatigue (68 per cent) has the biggest negative impact compared to disability and pain (55 per cent and 27 per cent respectively).This was most evident in people with advanced (metastatic) disease (100 per cent) and people on medication such as hormone treatment, chemotherapy and steroids (88 per cent).2  

Additionally, 83 per cent of men with the disease feel that intimacy with their partner is the area most restricted by their cancer, over activities such as sports (26 per cent), gentle exercise (22 per cent), travel (22 per cent), or hobbies (19 per cent).1 Over half of the men surveyed (52 per cent) say that their disease has a negative impact on their level of intimacy with their partner.1

The impact of prostate cancer is also as considerable on carers as on men with prostate cancer themselves.Interviews with UK caregivers (n=36) reveal that 62 per cent feel the prostate cancer has a negative impact on their own wellbeing even though 50 per cent of men say that they conceal or downplay physical and emotional problems associated with their disease.1

“Prostate cancer has a huge impact on a man both physically and emotionally, not least because it often limits his life and changes the dynamics of his relationships. Receiving a diagnosis is often extremely shocking but men are living longer now and they must be supported and have their quality of life protected”, commented Hugh Gunn, Trustee of Tackle Prostate Cancer, “We are pleased to have been involved in the development of this survey and report because it can shed further light on what is most important to men living with a difficult disease.”

Additional key findings from the survey found that:

  • only 13 per cent of UK healthcare professionals (n=80) feel sufficiently equipped to address patients’ quality of life needs;1
  • 67 per cent of men (n=103) claim that their healthcare professional does not advise them on ways to improve their physical and emotional well-being, apart from medication;1 and
  • 87 per cent of men (n=103) prefer to receive information about managing their physical and emotional wellbeing in face to face conversations with their healthcare professional rather than from any other source.1

Dr Maria De Santis, Cancer Research Unit, University of Warwick, UK, said, “We know that men struggle emotionally with the impact of the disease just as much as they do physically. However we can also see that it is daily life and relationships that are most profoundly affected, with fears for the future and worries about what will happen ultimately somewhat in the background. It seems that people with prostate cancer would welcome more advice and support on how to manage the impact of prostate cancer. Clearly more needs to be done to ensure that all the professionals that support men with prostate cancer work together to address the quality of life needs of patients.”

Prostate cancer is the most common cancer in men. Over 40,000 men are diagnosed with prostate cancer in the UK each year with a quarter of these cases affecting men aged under 65.3 Over 10,000 men die of prostate cancer each year, making it the second most common cause of cancer deaths in UK men.4 Some men diagnosed with prostate cancer will present with incurable metastatic disease (cancer that has spread beyond the prostate to other areas of the body).

The pan-European survey was carried out in ten countries across Europe by the independent research company, InSites Consulting. The Prostate Cancer: Living, not Just Surviving report can be viewed online here.

About the Prostate Cancer: Living not Just Surviving survey 

The Prostate Cancer: Living, not Just Surviving survey was initiated on the recommendation of an independent European patient advocacy group panel, which identified a need to improve support for men with prostate cancer by focusing on their longer-term, holistic (quality of life) needs and those of their caregivers.

A pan-European survey was then carried out amongst 765 men with prostate cancer, 335 caregivers and 400 healthcare professionals to ascertain their views on the physical and emotional impact of prostate cancer. In the UK, 103 men with prostate cancer, 36 caregivers and 80 healthcare professionals were surveyed. The survey was undertaken by the independent research company, InSites Consulting.

Participants were recruited from online research panels and through patient association group partners. Men with prostate cancer and caregivers were sourced from ten countries across Europe, including: the UK, Finland, France, Germany, Italy, Norway, Spain, Sweden, The Netherlands and Belgium. Healthcare professionals were surveyed in the UK, France, Germany, Spain and Italy.

The survey was developed and implemented in partnership with the following expert patient advocacy group panel members:

  • Professor Louis Denis – The European Prostate Cancer Coalition (Europa Uomo) (EU)
  • David Smith and Hugh Gunn  – Prostate Cancer Support Federation (Tackle Prostate Cancer) (UK)
  • Ian Banks – European Men’s Health Forum (EMHF) (EU)
  • Christian Arnold – Association Nationale des Malades du Cancer de la Prostate (ANAMACAP) (FR)
  • Calle Waller – Prostatacancerförbundet (SWE)

About European Prostate Cancer Awareness Day (EPAD)

EPAD 2015 aims to raise awareness, understanding and knowledge of the management of prostate diseases in general and prostate cancer in particular, and to highlight their significant impact on men across Europe and the burden on European social health care.  

References

1 Pan-European Prostate Cancer Patient, HCP and Carer Survey Results. InSites Consulting. October 2014

2 Prostate Cancer Patients and Carers Raw UK Data Tables. InSites Consulting. October 2014

3 Cancer Research UK. Prostate cancer incidence. Available here (accessed September 2015)

4 Cancer Research UK. Prostate cancer mortality statistics. Available here (accessed September 2015)

Good and bad news for men with prostate cancer from latest Cancer Drugs Fund announcement

The Cancer Drugs Fund (CDF) have announced that Cabazitaxel, an important prostate cancer drug, is now being reinstated on the CDF, having previously delisted the drug in March 2015.  Tackle Prostate Cancer can take significant credit for this decision, having campaigned vigorously through the media, and gaining support from well-respected oncologists for its reinstatement.  This is a victory for common sense and for those patients desperately  needing Cabazitaxel as a lifeline. 

At the same time the CDF have announced the removal of radium-223 (Xofigo®) from November 2015, although it will remain to be available for patients already receiving the treatment.  Although Tackle Prostate Cancer is disappointed to learn of this delisting,  the good news is that radium-223 has passed the final appraisal stage by NICE  and is expected to be available through normal NHS channels from January 2016.  We will be following this closely to ensure this happens. 

What this announcement confirms is that the current CDF process is not working well for patients, for clinicians, and for the powers that be.  It is recognised that a new model needs to be put in place that allows patient access to innovative drugs, but one which is cost-effective based on agreed patient-driven criteria.  Tackle Prostate Cancer will continue working with other charities in the Cancer Coalition to provide patient input to the development of this new model. 

Tackle very disappointed over NICE's withdrawal of enzalutamide

Commenting on today’s rejection by NICE of enzalutamide for advanced prostate cancer before chemotherapy, Chief Executive Rowena Bartlett said:

"For the thousands of men with advanced prostate cancer, this preliminary decision will be distressing. We believe that these men have the right to benefit from a treatment that can offer them a better quality of life, and for longer."

Enzalutamide is the first in a new class of medicines known as androgen receptor inhibitors. Prostate cancer relies on testosterone to grow, so this drug has been designed to bind to the receptors on prostate cancer cells that normally interact with testosterone, and block this interaction.

Tackle welcomes NICE's announcement allowing Radium 223 for advanced prostate cancer

NICE announced Radium 223 would be allowed for patients with advanced prostate cancer. Tackle Trustee Hugh Gunn commented: “Tackle welcomes the decision by NICE to allow the use of Radium 223 in patients with advanced prostate cancer who have had treatment with docetaxel. We would however, like this treatment to be extended to the very small subgroup of patients who, for clinical reasons can’t be given docitaxel. These parents will then be denied this successful treatment, in an area where there are few options left."

Tackle is incensed as use of advanced prostate cancer drug Degarelix is no longer officially recommended

Today, Tackle is incensed about the decision that yet another vital advanced prostate cancer drug is no longer being recommended by the National Institute for Health and Care Excellence (NICE). Following several limitations and removals of drugs from public availability over the past two years, Tackle feels men with advanced prostate cancer are being left with limited or sometimes no options for treatment.

Tackle's Chief Executive, Rowena Bartlett commented: "We at Tackle feel it is hugely disappointing that in taking this decision on DEGARELIX, NICE have failed to recognise the benefits to patients receiving the drug.  DEGARELIX causes rapid testosterone suppression within 24 hours, which is particularly beneficial for patients with bone pain, at risk of spinal cord compression or pathological fracture.

‘It is also beneficial for patients with hydronephrosis secondary to lymphadenopathy. It was never suggested that this drug would be suitable for all patients but those with symptomatic advanced disease. The alternative drugs take nearly four weeks to suppress testosterone to the same level. In terms of price, the cost is comparable to LHRLH agonist when the NHS discount is applied. To have another drug available in the armory to treat prostate cancer can only be of benefit for patients. The fact that NICE cannot define a group of patients for whom DEGARELIX is suitable is not in line with current UK practice and NICE continues to appear to alienate itself; being out of touch with clinicians and patients."

Publication of Quality Standard for Prostate Cancer

Tackle, Prostate Cancer UK, Macmillan Cancer Support, patient representatives, urologists, oncologists, clinical nurse specialists, cancer commissioners, and Ipsen Limited[†] came together through a joint working initiative, to develop a quality standard that best represents the quality of care for patients with prostate cancer with a particular focus on the quality and service requirements from the perspective of a prostate cancer patient.

A summary of the nine statements and what they mean to patients can be found here

To download the complete quality standard please click here

According to a report by Prostate Cancer UK (2013), there are, unfortunately, significant variations in prostate cancer incidence, patient experience, mortality and survival across the UK[1]. This quality standard aims to ensure all men with prostate cancer have a right to have the best possible care and support regardless of where they live.

Tackle welcomed the opportunity to chair the group of patient-led organisations. Roger Wotton incoming Chair of Tackle says, “having the voice of prostate cancer patients uppermost in our minds is the most valuable contribution we can make to ensuring services meet the needs of patients.  Working alongside similar-minded organisations on this initiative enabled us to evaluate the shortcomings in prostate cancer care across the country and build a consensus around a clear set of quality improvements.”

Prostate Cancer UK has long been highlighting the patchy levels of care for men with prostate cancer across the country. This quality standard puts the patient first and has been developed by many groups who truly reflect the experiences of men with this disease. We urge NICE to adopt our joint recommendations and set a benchmark for care, which puts the patient first and will ensure men with prostate cancer get the best support possible wherever they live,” said Karen Stalbow, Prostate Cancer UK’s Head of Policy and Campaigns.

Through this quality standard the group wish to give patients and their partner/carer a more powerful voice and active involvement in setting priorities for service improvement and in improving access to cutting edge diagnostics, full choice of innovative treatments and clinical trials.

Keith Cass MBE, Founder of the Red Sock Campaign believes that no decisions should be made which affect prostate cancer patients, without those patients being involved. This shared decision-making forms the crux of the NHS policy[2], which states: “no decision about me without me”. “With over 4,000 prostate cancer patients and carers contacting me through the Red Sock Campaign it is important that I have first-hand examples of how patients could affect the creation of quality standards, he says.

“Work on quality standards for prostate cancer has been a very worthwhile exercise,” highlights Dr Frank Chinegwundoh MBE, Consultant Urological Surgeon and Chair of Cancer Black Care.  “This particularly resonates with black men who are two to three times more likely to develop prostate cancer than other groups.  The voice of patients needs to be heard at high levels by those who shape national policy.”

Over the last six months, the working group members have identified nine quality statements that best represent the quality of care for patients with prostate cancer. As part of the development process these quality statements were also tested and validated amongst a wider group of stakeholders to ensure it resonated with a wider audience.

Moving forward, it is our expectation that commissioners, healthcare professionals, social services, patients, partners, and their carers consider this quality standard for local implementation to improve local services for men at risk of and living with prostate cancer.

NOTE: The National Institute for Health and Care Excellence (NICE) is expected to publish a quality standard for prostate cancer in June 2015 and are keen to ensure the quality statements within their quality standard are important to patients, service users and carers, and are feasible to implement. As part of the NICE consultation process these quality statements have been submitted to NICE for consideration within their quality standard for prostate cancer.

Tackle Prostate Cancer – the campaign name for the Prostate Cancer Support Federation. Reg Charity No 1123373

References:



 

[†] This is a Joint Working initiative between The Quality Standard Working Group for Prostate Cancer and Ipsen Limited



[1] Quality care. Everywhere? An audit of prostate cancer services in the UK. Available at: http://prostatecanceruk.org/media/1818657/1772-day-of-action-report_for-web.pdf (Last accessed: February 2015)

[2] Liberating the NHS: No decision about me, without me”. Available at: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/216980/Liberatingthe-NHS-No-decision-about-me-without-me-Government-response.pdf (Last accessed: February 2015)

Cancer Taskforce publishes Statement of Intent

In January 2015, an independent taskforce was established by NHS England  to develop a five-year strategy for cancer services with the aim of improving survival rates and saving thousands of lives.

The taskforce has now published a statement of intent which assesses the opportunity for improved cancer care, sets out the key questions the strategy will address and headlines the key ambitions and initiatives that are being considered for the  strategy.

Tackle contributed to the evidence given to the taskforce. We believe that, to improve outcomes for patients in the UK, a clear strategy should be in place to allow the cancer community to work together to help reduce variations in practice and ensure that high quality and timely care is delivered in a consistent manner.

Some of the key changes that the taskforce considers important over the next five years include:

  • Greater emphasis on prevention efforts, including secondary prevention;
  • A multi-faceted approach to detecting many more cancers earlier, including a step-change in capacity and a shift in culture around investigative testing;
  • Reductions in variability of access to optimal diagnosis and treatment and in inequalities in outcomes;
  • Integration of health and social care such that all aspects of patients care are addressed, particularly at key transition points in the system;
  • Patients feeling better informed, and more involved and empowered in decisions around their care;
  • A system that recognises the critical importance of cancer research and is primed to innovate, with cost-effective technological advances rapidly adopted and plans to embed stratified approaches in all elements of care;
  • A system that provides better and more immediate access to data and intelligence, as a key driver of improvement;
  • Commissioning based around health and wellbeing outcomes, with a population focus;
  • Clearer leadership and accountability for driving improvements, across the system.

Commenting on the statement, Tackle Chairman said: "we welcome this statement as an excellent start to the process of improved delivery of cancer services for patients and we would look forward to contributing to the workshops and other evidence in the next stages".

 

Jason Leonard - President of the Rugby Football Union - lends his weight to tackling prostate cancer

We are delighted to announce that Jason Leonard, the President of the Rugby Football Union is adding his support to our work: "I think the work that Tackle Prostate Cancer is doing is extremely important.  They need all the support they can get to tackle the effects of this dreadful disease".

We really appreciate his support.

Tackle Trustee Hugh Gunn tells us "What Matters Most" to him

Tackle Trustee Hugh Gunn is interviewed as part of the Every Moment Matters series which is supported and funded by Astellas Pharma Europe.

The series is looking at what survival means for men with advanced prostate cancer.

Tackle Trustee Hugh Gunn makes his views clear about the Cancer Drugs Fund's decision to withdraw Cabazitaxel

Tackle Trustee Hugh Gunn hasn't given up the fight to get Cabazitaxel back on the list of approved drugs since funding was withdrawn with effect from 12 March 2015.

Interviewed in The Guardian and BBC East Midlands today, Hugh says bluntly that without it "he will die". He maintains that cheaper drugs won't be effective and the costs of palliative care will far outweigh the savings. Alison Birtle - Consultant Oncologist at Lancashire Teaching Hospitals - comments in the interview that "the difficulty is that some men don't respond to hormone treatment and, for those men, there is no other alternative".

Tackle are supporting Hugh all the way.

Tackle makes submission to NHS England Cancer Taskforce on 5-Year Strategy for Cancer

Tackle Prostate Cancer welcomes NHS England’s announcement of the establishment of a new cancer taskforce to develop a five-year strategy for cancer.

We believe that to improve outcomes for patients in the UK, a clear strategy should be in place to allow the cancer community to work together to help reduce variations in practice and ensure that high quality and timely care is delivered in a consistent manner.

Commenting on the submission, Tackle Chairman Roger Wotton said "we are pleased to be able to submit evidence to the taskforce in order to inform the content of this strategy, particularly as we represent what is the most common cancer in men in this country".

Below is a summary of Tackle's submission. To read the full submission, click here.

Summary of Submission

The three commitments that you would like to see in a new cancer strategy that would significantly improve cancer services for patients/the health of the public, referencing any relevant evidence and costing information.

1. Risk Assessment and Referral - for men over 50 (or black men over 45)
2. Diagnosis – receiving the most effective diagnostic options irrespective of geography
3. Access to treatment – having access to treatments of choice


Examples of good practice in cancer services that you would like to see replicated across the country.

1. Ready access to Clinical Nurse Specialists
2. Greater use of hospice services integrated with primary/secondary care
3. Availability of supported self management
4. Access to specialist services post-treatment
5. Linking hospitals with support groups

The biggest barrier to improving cancer services.

Integrated and seamless support across the NHS

Prostate cancer charity Tackle raises concerns that drug appraisal and funding systems are failing cancer patients

In a joint letter written with other leading cancer charities published in The Daily Telegraph on 19 January 2015, we raised the concern that the drug appraisal and funding systems are failing cancer patients:

Dear Sirs

The establishment of an additional Cancer Drugs Fund was a clear sign that the current system for the effective and efficient commissioning of cancer drugs in England was failing to achieve its objectives. Now even this additional pot is crumbling under demand and the high cost of cancer drugs, and the knee-jerk reaction has been to save money by re-evaluating the availability of these drugs, regardless of need. The harsh truth is that cancer patients are paying the price for a system in meltdown. We refuse to tolerate such an appalling situation.

The number of people living with cancer is predicted to reach a record level this year in the UK. A long-term plan, for more sustainable and effective drug funding and appraisal systems in all parts of the UK is urgently required.  Only this way, with the full cooperation of manufacturers, will the health service be able to cope with demand and meet the needs of people affected by cancer.

Cancer charities are uniting behind this common goal and will be working closely with NHS England, the Department of Health, NICE and the Association of the British Pharmaceutical Industry (ABPI) over the coming months to develop a better process for commissioning cancer drugs. We will not rest until we get the system that is right for cancer patients now and in the future.

Yours faithfully

Roger Wotton
Chairman

and 14 other leading cancer charities

Prostate cancer charity Tackle welcomes the first annual report of the National Prostate Cancer Audit (NPCA)

Prostate cancer patients’ charity Tackle welcomes the publication of the first annual report of National Prostate Cancer Audit (NPCA). 

Sandy Tyndale-Biscoe, Chairman of Tackle, said: “We welcome publication of the NPCA’s first annual report, which highlights a view that many prostate cancer patients share, namely that there is great variation in standards of care for this disease, and not all patients are given the "best practice” treatment. I had the privilege to be involved in this work as a member of the Clinical Reference Group and was impressed by the integrity, thoroughness and independence of the team conducting the work, which is of a very high standard.”

The report makes 5 key recommendations, each of which Tackle wholeheartedly supports. These are:

  • increase the availability of multi parametric MRI to improve staging and treatment decision making;

  • increase the availability of high-dose rate brachytherapy for men with intermediate and high-risk localised or locally advanced prostate cancer;

  • improve the availability of personal support services including cancer advisory centres, sexual function and continence advice, and psychological counselling;

  • ensure all patients with prostate cancer have access to a Clinical Nurse Specialist (CNS);

  • ensure that patients have access to a joint clinic with a surgeon, an oncologist and a CNS to discuss their treatment options.

“We note that NICE is currently developing a Quality Standard for Prostate Cancer. We strongly urge their Quality Standards Advisory Committee to take notice of these NPCA recommendations which are also reinforced by recent patient led input to NICE on exactly these five topics.  Prostate cancer patients need to have their voice heard, otherwise they will have little confidence in any standard that emerges, particularly as there is no patient representation on the committee.

"Although as yet the audit only deals with patients diagnosed with localised or locally advanced disease, it presents real evidence of some of the shortcomings and failures in the health service’s standards of treatment. We look forward to the next stage of the project and urge the project team, as a priority issue, to widen the scope to include treatment of advanced prostate cancer, where there is growing evidence of varied and often unacceptable treatment standards.”

Tackle is the new face for the Prostate Cancer Support Federation’s campaign to support early detection and better treatment options for prostate cancer.

Prostate cancer charity Tackle is distraught as NICE slashes more drug availability – now for Abiraterone

Tackle is extremely disappointed that today, the National Institute for Health and Care Excellence (NICE), announces Abiraterone will not be available for men with advanced prostate cancer pre-chemotherapy. Tackle has appealed against NICE’s many limitations to advanced prostate cancer drugs, which will leave men without successful treatment.

This vital drug can help increase life span and control symptoms for men with metastatic castration-resistant prostate cancer (mCRPC), when it has spread to other parts of the body, and has stopped responding to hormone therapy treatments. Many men are unable through ill health to withstand the rigours of a chemotherapy regime. In such cases Abiraterone would be the right pathway for them. NICE has effectively blocked this therapy for the future. In limited cases the drug can be acquired until 2016 from the Cancer Drug Fund (CDF).  Recent decisions from NICE have effectively reduced to zero treatments for men at this stage of their disease other than chemotherapy. 

Hugh Gunn, Treasurer, commented: “We’re so distraught that NICE keeps limiting these life saving drugs for men with no other life lines, with seemingly no evidence to support its decisions. We will continue to question and appeal against NICE limitations and provide evidence of these drugs improving lives, wherever possible.”

Prostate cancer charity Tackle appeals against NICE delaying and limiting a life changing drug, Degarelix

Tackle is today once more appealing against the National Institute for Health and Care Excellence (NICE) to make the life changing drug Degarelix more widely available. Tackle is appealing against the limitation imposed on Degarelix to only be available to men with symptoms of spinal compression, which is quite rare on initial diagnosis. This is the fourth life improving prostate cancer drug that Tackle is in contention with NICE over, which has seen unnecessary limitations or refusals.

The NICE decision overlooks the considerable benefits of this treatment over conventional hormone therapy, especially in reducing the risks of cardio vascular events and the longer time taken for the body to become immune to hormone treatment. Degarelix has been available in the UK from 2009 for men with advanced hormone dependent prostate cancer and was recommended by NICE in their draft guidance for those only at risk or with symptoms of spinal compression, which Tackle previously appealed against. This draft guidance has now been superseded by final guidance that restricts men eligible for treatment with degarelix to only those with symptoms of spinal compression – reducing the number of men eligible from approximately 3,520 to less than 520 patients per year.

David Smith, Honorary Secretary, Tackle said: “Having fibrosis of the lung, my heart has to work harder than it should and the LHRH analogue I take only exacerbates this*. Tackle aims to help make available drugs such as Degarelix which can help improve life and reduce heart problems to many other patients such as myself. NICE keep delaying drug approvals and limiting them seemingly unnecessarily and Tackle will always look to dispute this to help improve and prolong lives.”

Dr. Patrick Davey, cardiologist states: “1 in 3 men with prostate cancer has experienced a cardiovascular event with many medicines raising the risk. Degarelix is associated with significantly reduced risk of cardiovascular disease and its benefits should not only be limited to 520 men.”

Tackle hopes NICE will consider cardiovascular evidence and omit the limitations to help thousands more men to cope with their diagnosis.

Tackle’s prostate cancer charity conference explored wellbeing tips and coping mechanisms ahead of Father’s Day

Patient-led prostate cancer charity, Tackle, hosted its ‘Wellbeing’ conference at Twickenham Stadium yesterday, during Men’s Health Week, which unearthed some simple steps to help patients cope with diagnosis and symptoms. Falling near Father’s Day, the talks reminded patients that spending time with loved ones and practicing hobbies can help to mentally and physically deal with the disease.

Sandy Tyndale-Biscoe, Chairman of Tackle, commented: “When men are diagnosed with cancer they often mentally shut down and feel out of control. The conference explored techniques that we can share with members to help them deal with their disease and keep track of important symptom changes. Father’s Day can be a difficult time for some but it is important to be around loved ones, do things for other people and embrace what you enjoy, especially when dealing with cancer, and this conference has helped us focus on the positive.”

Members of Tackle, sponsors of the event Prostate Cancer UK and healthcare specialists listened to talks from healthcare professionals covering physical and mental wellbeing. Dr Stéphanie McArdle of Nottingham Trent University’s John van Geest Cancer Research Centre presented ‘Surviving prostate cancer through a positive mental attitude’. Here Dr McArdle showed how meditation, laughter and working in support groups like Tackle’s can help with positive mental attitude and aid recovery.

Director of Natural Therapies, Elaine Williams and Clinical Nutritionist, Weight & Health Coach, Stephanie Moore from the Grayshott Spa in Surrey, presented their holistic approach and techniques for wellbeing. The spa itself is renowned for an extensive range of natural therapies and lifestyle treatments. To mark its 50th anniversary, the Spa has donated £250,000 worth of stays to Tackle in addition to working on some exciting upcoming events and collaborations.

To get involved with Tackle’s Father’s Day conversation, post positive things about your #FathersDay to @Tackleprostate #TackleProstateCancer. For more information on Tackle or to join a support group visit www.tackleprostate.org or call the national help line on 0845 601 0766.

Tackle gives cautious welcome to NICE turn-around on Enzalutamide

Tackle today welcomed NICE’s announcement that the new drug Enzalutamide is to be approved for men with hormone relapsed prostate cancer whose disease has progressed following docetaxel chemotherapy. This offers a vital lifeline to thousands of men facing ‘death sentences’ due to the very limited options for treatment if chemotherapy has failed. Enzalutamide has shown great success treating men with advanced prostate cancer beyond the stage at which conventional hormone treatment or docetaxel chemotherapy is effective.

Three months ago NICE issued a draft of this guidance in which the use of Enzalutamide was not approved after abiraterone, another hormone drug with a different mechanism of action. Evidence supporting this restriction was very thin, and it resulted in bitter complaint by thousands of patients, represented by Tackle and by Prostate Cancer UK. Tackle is very pleased that NICE responded positively to the submissions that it made against the restriction.

Sandy Tyndale-Biscoe, Chairman of Tackle, said: “Tackle is relieved NICE responded to the initial outrage and responses to the draft guidance. Finally this drug is available to improve and prolong life for those who have been anxiously waiting for several months. On the question of its use after abiraterone, which they mention but offer no guidance on, we would very much have preferred it if they had followed Wittgenstein’s dictum, and remained silent about that on which they felt they could not speak, but the main objective has been achieved and we are grateful for that. Our task, as patient-led support groups, is to ensure that the individual oncologists and local commissioners are aware of the effectiveness of enzalutamide whether or not abiraterone has previously been used”

Hugh Gunn, Treasurer of Tackle, and one of those men who has shown spectacular results after 18 months on Enzalutamide, said: “I faced an early death sentence having been taken off abiraterone as it was causing liver problems. I was lucky to be put on Enzalutamide. That was 18 months ago and now I feel generally well with a busy, active lifestyle. My PSA has settled down to a steady 0.7 and all of my other blood results are fine. I hope that this NICE ruling will now give other men the same chance of life as myself.”

Tackle gives qualified welcome to NICE approval of Degarelix.

Today Tackle welcomes NICE’s approval of Degarelix as an advanced hormone-dependent prostate cancer treatment which doesn’t cause tumour flare. Tackle however does not agree that the drug should be limited to only patients with spinal metastases who present with signs or symptoms of spinal cord compression.  It has a wider applicability, for example in other circumstances where rapid reduction of testosterone and PSA is desirable, with no tumour flare.  Furthermore, its cardiac safety profile is superior to existing similar therapies.

David Smith, said:

 "Tackle welcomes the limited NICE approval given to Degarelix for the treatment of spinal decompression due to bone metastases.. Degarelix has a  rapid effect on suppressing testosterone and maintaining the suppression for longer than existing therapies. It does not cause tumour flare, so there is no need for the co-administration of antiandrogens which can cause liver problems.  We call on NHS commissioners to give the flexibility to the clinician to decide when benefit is to be derived from prescribing degarelix instead of an antiandrogen and LHRH agonist*.

This news from NICE comes at a time when a number of other drugs for advanced prostate cancer are being assessed, one of which, Radium-223, is particularly targeted at bony metastasis. We trust that NICE are not making this favourable decision as a sop to patients in advance of less encouraging news on more effective treatments.”

Prostate cancer charity moves closer to ‘Tackling’ population screening from Awareness Month onwards

Press Release - 14th March 2014

During Prostate Cancer Awareness month in March, patient-led prostate cancer charity, Tackle, celebrates progress towards the penultimate stage of its population screening research trial, Riskman. The fourth of the five stages, Riskman Plus, would see 10,000 ethnically diverse men across 20 GP practices be tested using a risk calculator to accurately discover more high grade cancers. This will reduce the number of unnecessary biopsies for men with low grade cancers.

David Smith, Honorary Secretary, Tackle commented: “Prostate cancer is predicted to be the most common cancer by 2030 and receives only a fraction of the funding other types of cancer receive. We are now looking to find the £1.5M funding to help us take this major step towards population screening of prostate cancer. Alongside our partners from Poland and Stockholm we are now focusing on finding a genetic or biological marker to help increase accuracy of the risk calculator, testing this on 10,000 men and ultimately removing the need for Digital Rectal Examinations (DRE).”

Helping Tackle reach the goal of providing risk calculators to every GP in England and Wales is Dr Jon Rees and Professor Ken Muir who are overseeing the development of the trial in surgeries in Bristol and Salford and the medical schools of the Universities of Warwick and Manchester.

Throughout Prostate Cancer Awareness month and the rest of the year, Tackle, in partnership with the Graham Fulford Charitable Trust, will hold testing days at various race days and football clubs. 1 in 8 men and 1 in 4 Afro-Caribbean men will suffer from the disease. Every hour one man dies from prostate cancer which is the most common cancer amongst men.

As the Riskman trial progresses, Tackle will continue to advocate regular Prostate Specific Antigen (PSA) testing for men over 50 as a method of early detection of cancer when curative treatment can be given.

Tackle aims to advise patients of different pathways for medicine and care. The charity is looking forward to hosting the Europa Uomo conference on 13th June 2014 where the European Prostate Cancer Coalition groups will assemble in the UK for the first time and discuss new research to help improve prostate cancer care.

Please visit our new website to find out more information on testing days, your local support groups or how to get involved at www.tackleprostate.org or call 0845 601 0766 for the National Help Line.

 

Note to Editors

Professor Ken Muir, Universities of Warwick and Manchester Medical Schools, Epidemiology Department, Dr Jon Rees, GP, and Dr. Frank Chinegwundoh, Consultant Urological Surgeon, are available for interview.

 

For press enquiries please contact Jana Pavelkova on 0207 831 2225.

Email: jana@thinktank.org.uk

 

 

Some good news about Enzalutamide

The phase III PREVAIL trial of enzalutamide (Xtandi), in men with advanced prostate cancer who have not had chemotherapy, has been stopped early after meeting its co-primary endpoints of overall survival and radiographic progression-free survival.

The recommendation to stop the trial and allow participants in the placebo arm be offered enzalutamide was based on positive findings in a preplanned interim analysis. Specific findings were:

  • a statistically significant overall survival benefit compared with placebo treatment. Enzalutamide reduced the risk of death by 29%, compared with placebo;
  • a statistically significant reduction in risk of radiographic progression or death by 81%;
  • men taking enzalutamide experienced a 17-month increase in the time to initiation of chemotherapy compared with men taking placebo (28.0 months versus 10.8 months);
  • enzalutamide extended the median time to PSA progression from 2.8 months (placebo) to 11.2 months;
  • nearly 4 out of 5 patients in the enzalutamide group experienced a PSA decline of 50% or more, compared to less than 4% in the placebo group

Dr Heather Payne, Consultant in Clinical Oncology at University College Hospital, London comments: “The results of the PREVAIL study are very exciting and represent a significant milestone for the future treatment of men with advanced prostate cancer in the UK. Enzalutamide not only significantly improves survival in these men, but can also potentially offer the opportunity to delay the need for chemotherapy by over 17 months. These results further reinforce the role of enzalutamide as an important new option in the treatment of prostate cancer.”

The manufacturers now plan to seek the necessary European regulatory approval for this expanded use of enzalutamide. Then it will be up to NICE. Don't hold yopur breath; it's approval for general NHS use is probably 18 months away. 

We say: "We are delighted (but not surprised) by these results. They demonstrate something that we have long believed, namely that these new therapies are even more effective when used as soon as a man's cancer develops to the "hormone-relapsed" stage, and before he is half-killed by chemotherapy. 

In the light of NICE's recent cruel decision, based on no evidence, to deny Enzalutamide to men who have had Abiraterone, this announcement could not have come at a better time. We urgently call for NICE to review their position on this drug, in both its pre- and post-chemo roles."

Patients outraged by cruel NICE betrayal

Men with advanced prostate cancer have been betrayed by “Orwellian” manoeuvring by NICE to deny them the life-saving drug, Enzalutamide.

Enzalutamide is one of two drugs used to control the cancer when, as invariably happens, conventional hormone therapy and chemotherapy cease to work. The other is Abiraterone, which was approved by NICE in mid-2012 (after protests by patients when it was initially denied them) and many men are doing well on it. However, one of its drawbacks is that it can cause liver damage, particularly in patients who have previously had chemotherapy. For such patients, the only hope is Enzalutamide, which has been undergoing the NICE appraisal process for the last 14 months.

All the signs were that that it would be approved. Indeed, the last draft of the consultation document, released in November, approved the use of the drug for any patient who had had chemotherapy. Based on this a number of clinicians have led those of their patients who are not doing well on Abiraterone to expect imminent approval of Enzalutamide.

Earlier this year however, in a cruel move that dashed these patients' hopes, NICE issued to consultees a document, in which, to patients’ and clinicians’ dismay, with no prior discussion, a caveat had been introduced that use of Enzalutamide was not approved where the patient had previously been given Abiraterone, the very class of patient for whom it might be said that Enzalutamide was developed. We in Tackle immediately sent a strong letter of protest, pointing out that this was an abuse of NICE’s process, and represented a cavalier treatment of men with advanced prostate cancer, who are ill-placed to fight for their rights. Apart from the procedural failings, the caveat was unjustified as there is no evidence to support it.

This revised aassessment will be discussed and finalised in March. Not only has this delayed the process of approval, for which many men are waiting, hoping that they don’t die first, but if this unjustified restriction is not removed, many hundreds of men will be denied their last chance of a greatly extended life.  At the very least we want an explanation of the reasons behind this caveat.

We say: Patients are outraged by this cruel betrayal by NICE. NICE have broken their own appraisal procedures in order to introduce, based on no evidence, a significant change that will be the death knell for many patients. They cannot be allowed to get away it. We call on clinicians, some of whom have reported “spectacular” results with this drug, to put their weight behind a patients’ call for fairness.

We encourage everyone who cares about this gross injustice to sign the petition set up by Prostate Cancer UK and supported by Tackle.

Federation plans to 'Tackle' prostate cancer

As was announced at the AGM in May, we have embarked on a “branding” exercise,
designed to get the Federation recognised as THE Independent Voice of prostate cancer patients. This was identified by Trustees and Members as one of our chief priorities at the Autumn Workshop last November. To help us with this, we were lucky to recruit the pro-bono services of Paul Gray, a PR consultant with long experience in the property market.

Paul explains that “… it was apparent that applying the same criteria to the charity sector as I had done in the property market would not only be productive but actually essential in order to compete in the increasingly demanding voluntary arena.”  Due partly to the economic climate and partly to how marketing-savvy the 21st century is, the same principles pertain – whether to a small charity’s fundraising campaign or to a FTSE 100’s investorrelations initiative. Nomenclature and terminology will vary depending on which trendy consultant or agency you use but, essentially, marketing, communications and business development in any sector is predicated on:

• Target audiences
• The organisation’s values, i.e. what it stands for and the principles iot holds
• Mission, value proposition (VP), organising thought or strapline, driven by unique selling propositions (USPs) and track record
• Vision for the future driven by the mission or VP - less tangible, more abstract, the ultimate destination and for internal consumption

Our challenge was how to sell and communicate a charity whose name, however fondly we are attached to it, is, it must be said, largely unmemorable. As Paul said at the AGM, “the Federation does great work and is well-perceived by its members. However for Rowena to be able to do her job and raise funds and your profile commensurate with your values, mission and vision a new, appealing corporate handle is essential.”  We are aware that our members appreciate the somewhat cosy, club-like, atmosphere conjured up by the name Prostate Cancer Support Federation, and we have no intention of changing that. To our members, we remain a club. But to
the outside world we need something with more impact:

• The market is highly competitive,
we need to stand out, we need to
be noticed
• We need to look good so we can
attract supporters
• We need to attract supporters so we
can raise funds
• We need to raise funds so we can
TACKLE PROSTATE CANCER

Live The Dream - A Horse Called Prostate Awareness

Most of us have a dream in life and if we are lucky, we get the opportunity to realise it. That will be the case for Colin Peach from the Teeside Support Group.

Colin has always wanted to own a racehorse and he decided at the age of sixty six that the time had come. On 24th May 2013, Colin and Patrick Holmes (trainer) from Foulrice Racing Stables, went over to Ireland and watched about a hundred horses run over 3 furlongs. The following day Colin bought a 2 year old bay colt at the auctions and he has aptly named it Prostate Awareness.

Colin was diagnosed with prostate cancer in 2006 and had a radical prostatectomy. Unfortunately it had already spread outside the prostate and he has since been through
various treatments; hormone therapy, 6 weeks of radiotherapy, 30 weeks of chemotherapy, Abiraterone, and currently Dexamethasone. As many men will know that is a hard road to travel, both physically and mentally and it is only natural to feel "the time has come" to live the dream.

Hopefully, PROSTATE AWARENESS will be having his first run at York on 28th July 2013. On race day the jockey will be wearing light blue and white with a dark and light blue
chequered cap.

Colin obviously has high hopes for his young horse and we all wish him the best of luck and what a wonderful way to raise awareness!