Fifteen leading UK cancer charities have today called on David Cameron to 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 unchanged will soon lead to effective new 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 NICE 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 short-term measure in the first place.

Outlining their key concerns ahead of the launch of the new Cancer Drugs Fund, the 15-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.”

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.

When the CDF began 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]”. Five years on, leading charities are today asking the Prime Minister to honour that promise and commit to reviewing the wider appraisal system.

There is now a final opportunity to engage in open dialogue with all stakeholders to ensure its design is finally effective in making cancer drugs available to patients, ahead of the publication of the Accelerated Access Review this summer.

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

The letter, dated Monday 16th May 2016, reads:

Dear Prime Minister,

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

As a coalition of 15 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
Baroness Delyth Morgan, Chief Executive at Breast Cancer Now
Deborah Alsina, Chief Executive at Bowel Cancer UK
Jane Lyons, Chief Executive at Cancer52
Kate Lee, Chief Executive at CLIC Sargent
Monica Izmajlowicz, Chief Executive at Leukaemia Care
Louise Bayne, Chief Executive at Ovacome
Alex Ford, Chief Executive at Pancreatic Cancer UK
Angela Culhane, Chief Executive at Prostate Cancer UK
Dr Jesme Fox, Medical Director at Roy Castle Lung Cancer Foundation
Lindsey Bennister, Chief Executive at Sarcoma UK
Rowena Bartlett, Chief Executive at Tackle Prostate Cancer
Annwen Jones, Chief Executive at Target Ovarian Cancer
Sarah Lindsell, Chief Executive at The Brain Tumour Charity

Baroness Delyth Morgan, Chief Executive at Breast Cancer Now, said:

“Not a single breast cancer drug has been considered cost-effective by NICE in the last seven years and this simply cannot continue. The voices of patients are, at best, not being heard, and, at worst, being ignored.

“With an anachronistic NICE system still unable to engage in price negotiation, it’s inevitable that patients will not be able to access the clinically-proven medicines that could mean so much to them.

“The Scottish drug approval system is currently undergoing its second review in three years to ensure constant improvement to the processes. It is high time we do the same with NICE to ensure it finally works for cancer patients, now and in the future."

Mark Flannagan, Chief Executive at Beating Bowel Cancer, said:

“The creation of the Cancer Drugs Fund was a huge step forward. Since its establishment, doctors have been able to offer their patients some of the best treatments available in the world. These treatments have greatly improved the quality of patients’ lives, giving them precious extra months and even years of additional life with their families.

“Putting NICE back in the driving seat of the new fund, while they still use outdated methods of assessing drugs, will take us right back to the dark ages for cancer drugs funding.

“Unless there is fundamental reform of the methods of deciding whether a cancer drug is cost effective enough for use on the NHS, hundreds of eligible people could be cruelly denied the best treatment options for their advanced cancer.

“These treatments will still be available for patients in much of the western world and it’s a disgrace that patients in England are likely to be denied them”.

Annwen Jones, Chief Executive at Target Ovarian Cancer, said:

“The strength of the Cancer Drugs Fund lay in its flexibility, its ability to negotiate on price or commission drugs for off-license use. “Unless NICE is given the same flexibility, the coming changes will mark a step backwards in patient access to new cancer drugs and will see the indefensible triumph of bureaucracy over common sense.”

Alex Ford, Chief Executive at Pancreatic Cancer UK said:

“The Cancer Drugs Fund, having acknowledged that the current system hadn’t been working well for patients, gave greater hope but its replacement needs to do more, not less. We want to see a bolder approach that goes much further to change with the times and make better access to effective treatments the norm.

“Very few treatments exist for pancreatic cancer patients and survival rates have barely changed in 40 years. For the average patient who can expect to survive just 2-6 months after diagnosis, new and effective treatments which mean extra time with loved ones need to be accessible as quickly and efficiently as possible.”

[i] HM Government, The Coalition: our programme for government, 2010

More information

Read the story on The Daily Telegraph website