CLLSA letter to the Secretary of State for Health, as CLLSA appeal the National Cancer Drugs Fund plans to remove CLL treatments.




The CLLSA apeal against potential CDF delistings has been concluded, the template letter is now out of date and has been removed from the website.

Read more in the CLLSA chairman’s update letter of 14th November 2015 this summarises the CLL specific outcome and next steps following the CLLSA campaign and letters to MPs.  Together we will keep up pressure and continue with pressing for access.


 Letter of  30 September 2015 below


Dear Secretary of State

I am writing on behalf of the Trustees of the CLL Support Association and our 1500 patient members to express our deep concern at the NCDF announcement on 4 September 2015 to delist  bendamustine and Ibrutinib from the NCDF list.

We have submitted an appeal directly to the Chair of the Cancer Programme of Care Board requesting that these decisions be reversed and are asking you to intervene to ensure that our appeal is granted.


This is the basis of our appeal.

1. Chronic Lymphocytic Leukaemia is a rarer cancer with orphan status. We believe that this group of patients has been severely disadvantaged and discriminated against by the current system, in particular in the scoring systems for Overall Survival (OS) and Progression Free Survival (PFS) which are applied unfairly to trial data for these small populations.

2. Both Bendamustine and Ibrutinib are used in the treatment of relapsed chronic lymphocytic leukaemia, a disease for which there is no cure.  Patients whose CLL relapses early have a more aggressive form of the disease and it is essential that clinicians have a range of treatment options available to suit individual patient need - this is due to the variable course and nature of the disease, the toxicity profile of the therapies and the comorbidities which are more prevalent in this patient population. We believe that the complexity of this situation is not well understood by the NCDF panel and this has resulted in clinical decisions being taken out of the hands of both the consultant and the patient. No CLL patient groups were consulted during the decision making process, which is an alarming omission.

3. Neither Bendamustine nor Ibrutinib have been appraised by NICE for relapsed patients and are on the NCDF due to their wide support in the clinical and patient community. NHS England is well out of step with many European countries and the United States where these drugs are routinely available and have a significant impact on life expectancy and also on quality of life. The number of patients for whom applications to NCDF have been made illustrates both the demand and the need for these drugs - Bendamustine 583 patients since April 2013 and Ibrutinib (listed January 2015) 178 patients in Q1 2015.

4. We value the principles under which the CDF was set up in 2010/11, together with its extension until March 2016, and recognise that such funding has undoubtedly helped more than 74,000 people to access cancer drugs not otherwise available on the NHS in England.  However, as one of the CDF's objectives was to give people with rare and less common cancers access to life-saving treatments, it has been extremely disappointing to read in the National Audit Office report 'Investigation into the Cancer Drugs Fund' highlights, published on 17 September 2015, that much of this impact has been at the expense of rare and less common cancers. The CDF budget overspend occurred in the two years to March 2015 and in previous years it was underspent. If you consider the rate of technological change in the five year period then a cost overrun as a percentage of budget of 104% is hardly excessive. However, the period of the overspend coincides with the failure of NHS England to put in place a new pricing system when the Pharmaceutical Price Regulation Scheme expired in 2013. While we understand that NHS England plans to consult on its proposals in autumn 2015, the intervening period causes great uncertainty and concern in the patient community. We urge the Government and NHS England to progress their pricing and discounting discussions with manufacturing companies in a timely way as it would appear that the confidential scores on price, to which we do not have access, have weighed heavily in the NCDF delisting decisions.

We welcome the announcement on 24 September 2015 by NICE of the Final Appraisal Determination for the approval of Idelalisib in combination with Rituximab. This is an important step forward but it is not the only step required. The pace of research and development of trials for CLL is as important as ever and must increase if we are to work towards the long term management and finally a cure for Chronic Lymphocytic Leukaemia. In the interim, a wide portfolio of treatments is needed to cover the specific needs of all CLL patients.

Therefore, we urge you to review the National Cancer Drugs Funds decision to delist both Bendamustine and Ibrutinib.


Yours sincerely

David Innes



Follow up for those affected by CLL

Are you able to help us follow up on the formal appeal we have made on the proposed CDF delisting decisions and  our letter to the Secretary of State?


 What can you do to help?


It is now important that we involve  everyone affected by CLL to help retain the momentum of our campaign and so we are asking as many of you as possible to write to your MP in support of our appeal. You could also make an appointment at your MP's surgery to discuss the issue if you feel that you have enough information and feel strongly about it.


We have drafted a letter for you to use which you can tailor as you wish to emphasise how these decisions affect you personally.  you can read more, gain some further background and download the letter template  from the website here 


Thank you in advance for your support.