Manifesto calls for action on cancer drug access as survey shows patient delays

A new 10-point manifesto from a leading research institute is calling for action to speed up access to innovative cancer drugs as an accompanying survey of 1,000 cancer patients finds many face barriers in receiving the latest treatments.

As many as 16 per cent of cancer patients have been denied a drug recommended by their doctor or experienced delays in receiving it, and nearly half of those who have tried to enrol in clinical trials of new treatments have been unable to do so, the survey finds.

The Institute of Cancer Research, London, a charity and world leader in cancer drug discovery, surveyed 1,064 people who had been treated with cancer to help shape recommendations for improving access to the latest treatments.

Professor Paul Workman, Chief Executive of The Institute of Cancer Research (ICR), presents a new Cancer drug manifesto at a Westminster Forum on drug access today (Thursday), responding to the views of researchers and patients with the following calls to action:

• NICE should prioritise genuinely innovative cancer treatments that attack cancer in brand new ways – as it is these which will give us new tools to overcome drug resistance.

• Radical action is needed to bring down the extremely high prices of modern cancer drugs, such as tying prices to the benefits that treatments deliver, so that as many patients as possible can benefit from research advances.

• Drug regulators need to be more flexible in assessing evidence, so that innovative new treatments can reach patients as quickly as possible.

• Rival drug companies should be incentivised to trial their medicines together – so we can defeat cancer through combination treatment as we do with HIV.

• We must expand drug research and clinical trials for children, and be flexible on age limits for trials to avoid denying older children and young adults access to new treatments.

Some 12 per cent of patients responding to the ICR’s accompanying survey said they had experienced a delay in receiving the cancer treatment recommended by their doctor – while 9 per cent said they had been denied a drug entirely.

A fifth of cancer patients had tried to enrol in clinical trials of new treatments – but only just over half of these people had been successful in doing so.

Some 40 per cent of cancer patients surveyed said they supported the role NICE plays in determining which drugs are suitable for NHS use – compared with 29 per cent who did not. But only 16 per cent of patients agreed that NICE was carrying out its role well, with 35 per cent disagreeing.

The ICR’s survey also found that patients have major concerns about the role of pharmaceutical companies, with only 12 per cent believing they are doing well at delivering new medicines. Cancer patients overwhelmingly believe that the high prices charged by pharmaceutical companies are the biggest barrier to gaining access to new cancer drugs – with 70 per cent saying they thought the prices charged by companies were ‘much too high’.

These new survey findings and recommendations follow publication by the ICR of a major report last year which analysed all 97 cancer drugs licensed for 177 indications through the European Medicines Agency between 2000 and 2016, to assess how successful the system is being at delivering new treatments for patients. The report, From Patent to Patient, showed that NHS patients are waiting longer for new cancer drugs because of delays in taking them through clinical trials and licensing.

The ICR manifesto states that NICE should do more to prioritise the most innovative cancer treatments with the greatest potential to deliver step-change advances for patients. That means broadening NICE’s definition of innovation to not only talk about effectiveness in areas of unmet meet, but also to give precedence to treatments that tackle cancer in brand new ways.

The ICR believes we need to consider a range of actions to bring down the extremely high prices of modern cancer drugs so they can be made available to NHS patients more quickly. These could include outcome-based pricing, varying pricing by drug indication and capping the price of a drug class at whatever is charged by the first company to the market.

The ICR also says that drug regulators need to be more flexible in assessing evidence, looking beyond overall survival advantage at other measures such as quality of life, so that innovative new treatments can reach patients as quickly as possible.

We need to make sure that suitable clinical trials are available for every cancer patient who wants to be treated on one. That will not only speed up development of new cancer treatments, but should also ensure cancer patients are looked after as well as possible – since there is evidence that trials are the best way of delivering state-of-the-art care.

The manifesto warns there is very little drug discovery research for children’s cancer and that there are far too few clinical trials – limiting access to the latest life-saving or life-extending treatments. There needs to be more flexibility on the age limits for clinical trials to avoid denying older children and young adults access to new treatments simply because they are judged too young or old.

Professor Paul Workman, Chief Executive of The Institute of Cancer Research, London, said:

“We will only make step-change advances against cancer by giving patients access to genuinely innovative new drugs, which can attack cancer in brand new ways or as part of innovative combinations to overcome the challenge of drug resistance.

“Our manifesto calls for action to supercharge the passage of the most innovative cancer drugs through clinical trials, licensing and NICE appraisal, and into the NHS. We need drug regulators and NICE to be faster and more flexible in their assessment of evidence, especially for the most innovative treatments. And it’s crucial also to address the extremely high prices of cancer drugs, which researchers and patients agree are the biggest barrier to getting them to patients.”

Professor Raj Chopra, Head of Cancer Therapeutics at The Institute of Cancer Research, London, said:

“We need to see all cancer patients reap the benefits of research through access to innovative treatments, irrespective of what cancer they have, how old they are or where they live in the country. It’s only by encouraging innovation that we can make big leaps forward in treating those forms of cancer that have so far missed out on major progress.

“It’s essential too that we ensure all cancer patients have access to suitable clinical trials – and that we greatly expand efforts to discover and develop new drugs for children with cancer, so that they can start to benefit from the same kinds of advances we have seen in adults.”

Emma Clarke, 46, from Cheshire, was diagnosed with breast cancer in 2016, and it was found to have spread to her bones in 2018. Later genetic testing revealed she carried a BRCA1 mutation. She is currently being treated with chemotherapy and is due to begin radiotherapy soon. Her daughter recently discovered she also has the BRCA1 mutation.

After Emma’s radiotherapy, she will begin receiving an innovative targeted treatment, called olaparib, privately. Olaparib is currently only available on the NHS for ovarian cancer but has been licensed for advanced breast cancer with BRCA mutations in the US, and very recently in Europe.

Emma said:

“I have done a lot of research into my type of cancer – about having a BRCA1 mutation and the possible treatments available for me. Because I have the BRCA1 mutation and, at the moment, carboplatin is working well for me, I found out that olaparib has a good chance of also working well for me. I’m fortunate enough to be a private patient and have asked my doctor about starting olaparib, which I will begin taking as a maintenance treatment when my radiotherapy finishes in June.

“I wholeheartedly support progress in targeted therapies and getting these to patients as soon as possible. Targeted therapies give such hope to patients, like me, at extending our lives while living with fewer side effects than traditional chemotherapies.

“I was really surprised to see the length of the time gap between olaparib being available in the US and it now being approved in Europe. I hope for all the other BRCA-positive breast cancer patients in this country that it is available on the NHS as soon as possible. With advanced cancers like my own, once there’s good evidence that a new targeted treatment is shown to work and extend lives, it should be available to patients.”

Read the ICR’s Cancer drug manifesto and find out how we can improve access to cancer drugs:ICR.ac.uk/drugaccess

ENDS

Notes to editors

For more information please contact Ben Kolbington in the ICR press office on 020 7153 5359 or ben.kolbington@icr.ac.uk. For enquiries out of hours, please call 07595 963 613.

Download a pre-publication version of the ICR’s Cancer drug manifesto: https://we.tl/t-XjTG0lE4nL

Survey background

Between 4 March and 15 April 2019, the ICR surveyed 1,064 cancer patients by working closely with patient support groups, who distributed it to their members, and by promoting it on social media and directly to the ICR’s database of patient advocates. The findings do not provide a definitive picture of access to cancer treatments, but they do give a valuable insight into the experiences and views of cancer patients. We are enormously grateful to everyone who responded.

The Institute of Cancer Research, London, is one of the world's most influential cancer research organisations. 

Scientists and clinicians at The Institute of Cancer Research (ICR) are working every day to make a real impact on cancer patients' lives. Through its unique partnership with The Royal Marsden NHS Foundation Trust and 'bench-to-bedside' approach, the ICR is able to create and deliver results in a way that other institutions cannot. Together the two organisations are rated in the top four centres for cancer research and treatment globally.

The ICR has an outstanding record of achievement dating back more than 100 years. It provided the first convincing evidence that DNA damage is the basic cause of cancer, laying the foundation for the now universally accepted idea that cancer is a genetic disease. Today it is a world leader at identifying cancer-related genes and discovering new targeted drugs for personalised cancer treatment.

A college of the University of London, the ICR is the UK’s top-ranked academic institution for research quality, and provides postgraduate higher education of international distinction. It has charitable status and relies on support from partner organisations, charities and the general public.

The ICR's mission is to make the discoveries that defeat cancer.

For more information visit ICR.ac.uk