15 March 2017

Dear Editor,

We are deeply concerned about a new proposal which threatens to have a devastating impact on access to vital new health treatments for millions.  NHS England and NICE have put forward plans which could give them the power to indefinitely delay patient access to any effective new treatments which come to be approved for use in England but are likely to cost the system more than £20 million per year.

This cost-cap is likely to affect 1 in every 5 new treatments which come available. It could therefore potentially impact anyone in the future when they are most in need.  This is alarming. Delays to treatment could lead to irreversible deterioration in people’s health. In some cases there could be a real risk of patients dying while life-extending drugs are kept just out of reach.

We recognise the significant financial challenges facing the NHS. However, we do not believe an overall treatment cost threshold is the solution. It is an arbitrary approach which is bad for patients and a betrayal of NHS principles – the more people a treatment may help, the more likely it could be to be delayed.  This is a radical departure from the current way that drugs are evaluated as set out in the NHS constitution.

We call on NICE and NHS England to reconsider. Instead, we believe negotiation with the pharmaceutical industry should be factored in alongside treatment development to give patients the best chance of accessing new lifelines. Otherwise many patients, their families and carers could ultimately pay the heaviest price.

Yours sincerely,

Readers are welcomed to add their voice to this petition.

Angela Culhane, Chief Executive, Prostate Cancer UK; Dr Matthew Norton, Director of Policy and Strategy, Alzheimer’s Research UK; Douglas Brown, Director of Research and Development, Alzheimer's Society; Aisling Burnand MBE, Chief Executive, Association of Medical Research Charities; Kay Boycott, Chief Executive, Asthma UK; Judith Brodie, Acting Chief Executive, Beating Bowel Cancer; Deborah Alsina MBE, Chief Executive, Bowel Cancer UK, Diana Jupp, Acting Chief Executive, Bloodwise; Sue Farrington Smith, Chief Executive, Brain Tumour Research; Samia al Qadhi, Chief Executive, Breast Cancer Care; Baroness Delyth Morgan, Chief Executive, Breast Cancer Now; Bridget Turner, Director of Policy and Care Improvement, Diabetes UK; Rose Woodward, Founder and Patient Advocate, Kidney Cancer Support Network; Monica Izmajlowicz, Chief Executive, Leukaemia CARE; Genevieve Edwards, Director of External Affairs, MS Society; Louise Bayne, CEO, Ovacome; Alex Ford, CEO, Pancreatic Cancer UK;  Steve Ford, CEO, Parkinson’s UK; Paula Chadwick, Chief Executive, Roy Castle Lung Cancer Foundation; Roger Wotton, Chairman, Tackle Prostate Cancer; Annwen Jones, Chief Executive, Target Ovarian Cancer