Chairmans Report 2013 Spring

Welcome to the Spring edition of our newsletter.

I hope that you have coped with the longest winter I can remember and that you have avoided serious infections and have enjoyed good health.

The articles in this edition continue the really positive themes of recent conferences and published pieces about the exciting new drugs that are being developed to treat CLL. Andrew Schorr’s interview with Dr. Pagel and the views expressed at the patient meetings in Liverpool and Cardiff are really positive about the results of the trials of the drugs that do not involve chemotherapy and its toxic effects.

However it is important to remember, as stated in the Cardiff report, that it may be some time before such drugs are available in the UK, particularly for patients who are being treated for the first time. The drugs will need to be approved by the appropriate agencies and there is great frustration at the time it takes for the different committees to approve clinical trials and to progress them to general availability. Another factor is cost which is expected to be five or ten times the cost of the current gold standard treatment of FCR.

In my opinion, it would be unwise to refuse to have FCR treatment if it is deemed necessary by your consultant in the hope that one of the new drugs may be available in the near future. I say this from personal experience having recently completed the FCR treatment programme. I am now in remission with normal blood test results and feeling better than I have felt for years. I did experience some nasty side effects but I have forgotten about them now and am enjoying life to the full. I am hopeful that I will enjoy at least the average remission of five years by which time some of the new drugs will be available for me.

This is not to say we should sit back and wait to see what happens. The new NHS structures emphasise the importance of the patient voice and your trustees with the help of Garry Bisshopp, one of our volunteers, have been discussing how we embrace a new advocacy and lobbying role to ensure that the profile of the CLLSA is improved and that the voice of the CLL community is heard loud and clear, particularly by the new decision-making groups in the NHS. We hope to discuss this with you in more detail in the coming months but if you are active in lobbying or campaigning at the moment or you wish to volunteer to become more actively involved in this work please email me at: arthur.graley@cllsupport.org.uk

I hope you enjoy reading the newsletter and we look forward to receiving suggestions for articles in the future from more members. I look forward to meeting some of you at our next meeting which will be held in Southampton on July 1st. Details will be circulated in due course.

Arthur Graley