CLLSA Newsletter Jan 2019

Happy New Year and welcome to CLLSA's January 2019 

New Year Celebrations! 

It's always nice to start the year with good news, and we're delighted to announce that Chris Dwyer, a CLLSA Volunteer and our ‘top poster’ on the CLLSA HealthUnlocked website, has been given the very prestigious ‘CLL CURE Hero’ award by the American CLL CURE organisation. The award is given ‘for outstanding contributions in the field of CLL for the benefit of patients and their families’.

Chris was diagnosed with CLL in 1998 and his battle with the disease, including surviving Richter’s transformation, has been an inspiration for thousands of patients across the world. He is extremely knowledgeable about CLL and gives advice with an engaging sense of humour and irresistible determination. We are very proud to count Chris amongst our Volunteers on HealthUnlocked, and congratulate him on his well-deserved award.

 

 

And also! We were thrilled to receive a very generous donation of £500 from Anne and Malcom Jacobson of the Ruth and Lionel Jacobson Trust registered charity. The Trust exists to assist in the relief of poverty and sickness, provide for education and advancement of knowledge for all ages together with the provision of monies for the advancement of medical research making grants to appropriate institutions. Our sincere thanks to the Trust for this kind donation. 

Praise for HealthUnlocked

Many CLLSA members find enormous support within the HealthUnlocked community where we have over 11,200 members. We were delighted to start the year with the following kind words from community member, Wanda. We hope you will take inspiration and comfort from their words and join the discussions on HealthUnlocked if you haven't already done so.  

 

'Thank you to all the wonderful people on this website. I think this is my first post and I wanted to use it in gratitude for all who have made this website a place of refuge, hope, community, compassion, education.

I have been silently a part of this group since I found out I had CLL. Since then I have had you all with me on my journey, which included being diagnosed relatively young, several years of watch and wait, ending in a quick downward spiral this time last year.

Starting January 31, 2018, I was hospitalized once a month for 5 days each month during desensitization to Rituxan and other chemo drugs. This lasted through July 2018 when I acquired pneumonia. Since then, my blood counts have stabilized, however every immune system failure that I never dreamed of has occurred.

Long nights in the hospital and many illnesses later, this group is still here trying to help. During my lonely times in hospital, I always had you all. During my very bad days at home, I always had all of you. My space where my friends know how it feels to be confronted with our own mortality issues and never-ending hope, even when hope disappears for a while. Thank you everyone, you have made this journey a bit more bearable. May 2019 be a good year for us all'.

Our thanks to Wanda for the kind words and support and we reiterate the wishes that 2019 is a good year for all our members.

The Year Ahead

This year we shall continue to press the case for fairer treatment for all CLL patients at every opportunity in our contacts with NICE, NHS England and others and in our work with the other 11 members of the Blood Cancer Alliance.

 

Our targets. Please help us to meet them!

.To increase membership to 3,000 from our current total of 2,300 

.To increase income to £100,000 - split as follows: Pharma £40,000; Sponsorship £20,000; Local fundraising £20,000; Corporate £10,000; Donations £5,000; Legacy £5,000 

.To introduce our new status as a CIO (Charitable Incorporated Organisation) – this doesn’t change our founding principles and puts the organisation on a more sensible legal footing. It also means that our charity number will change 

.To run 6 member conferences in 2019.  

To help us to meet these targets we're on the hunt for Champions to help CLLSA's Trustees to deliver the charities objectives. Could you give 2-3 hours and help us in one of the following ways this year?

Fundraising Champion – special events, personal and team challenges, sponsorship, gift aid, donations.

Lobbying and Media Support Champions – contacting, briefing, lobbying supporting of MPs, PR with local media to raise awareness, supporting newsletter. 

Helpline Champions – Staffing the line, collating topics of calls for common Q&A section of the website. 

Digital Champions – Promoting CLLSA on social media. Managing blogs, Facebook page, online forum adjudication, group emails. 

We are keen to get as many members involved as possible. If you would like to find out more, please email Marc Auckland: marc.auckland@cllsupport.co.uk.

 

STOP PRESS!

Important News!

NICE approve Venetoclax + Rituximab combination therapy

 

We are very pleased to be able to report that, following representations from CLLSA and other blood cancer charities, NICE has rescinded an earlier decision and has agreed to approve the combination of Venetoclax and Rituximab for the treatment of relapsed CLL.

CLLSA attended all the meetings where the NICE committee considered this new combination, and we were invited to submit a patient testimony on the benefits that the new treatment could potentially bring to patients. Our technical expert and CLL patient, Jackie Martin, was able to outline a compelling case which drew on the results of the MURANO trial, headed by Prof. Peter Hillmen, a long-standing friend of CLLSA.

 

We are convinced that this new combination is another step-change in CLL treatment, and we will continue to press NICE and the NHS at every opportunity to approve new drugs that will benefit patients.

 

Fundraising  

Are you looking to increase your activity levels this year?

Are you brave enough to build up to a 10k run? Join us for our annual VIRGIN SPORT run!  We’ve a limited number of places available on team CLLSA for the Asics London 10k on 21st July. If you would like to run for us, please email Sarah Tobin, CLLSA coordinator to find out about our minimum fundraising targets and how we can support you in your running preparations: coordinator@cllsupport.org.uk.

Over the next few bulletins, we shall be setting out other plans on the fundraising area like sponsorship and local cake events. In the meantime, may we please repeat the plea in our last bulletin if you have any contacts with companies or trusts your help and support would be enormously appreciated. Please get in touch with David Innes on david.innes@cllsupport.org.uk.

Another way you can help

It's never an easy thing to think about but have you ever considered leaving a legacy for CLLSA in your Will? All it needs is a simple addition to an existing will, or if you don’t already have one, include CLLSA when it’s written. Your solicitor will advise on the correct wording, or you could get help from Remember a Charity. CLLSA is a member of Remember a Charity, and you will find all the necessary details on their website. 

 

Any legacy you wish to give is free from inheritance tax, so the taxman won’t get a penny! If you wish to leave a legacy, you can be sure that your money will continue to support us in helping CLL patients and their families.

Friends in High Places

Keeping Up the Pressure on Policy Makers 

N.B The following article was written before the launch of the NHS 10-year plan on 7th January 2019, in which priority is given to cancer for improved early diagnosis, new investment in diagnostic technology and extra funds for research and innovation. Our article shows what CLLSA is doing to ensure that blood cancers, and specifically CLL, are given due attention consistent with the NHS 10 year plan.

 

Many of you will recall that the All Parliamentary Group (APPG) on Blood Cancer and the inaugural report ‘The Hidden Cancer - The Need to Improve Blood Cancer Care' launched in early 2018. We had high hopes of a sea change in the way blood cancers were viewed in the UK particularly by politicians and those who make decisions about the way CLL is managed and treated. Thanks to the work of CLLSA and in particular David Innes, our Chair, we took full advantage of this initiative to make new friends in high places. Later in 2018, when many of us got behind the successful campaign to ensure that ibrutinib was available for those with relapsed CLL, we were able to leverage support to get our voice at the centre of the debate. Just before this, Steffi Sutters became a trustee of the Charity and attended the APPG meeting on 13th November, chaired by Henry Smith, MP with an address by Duncan Sim, Policy Adviser Cancer Research UK, who spoke about patient access to blood cancer medicines under the NHS England Cancer Plan.  

 

It had been announced that two complex and ground-breaking CAR T immunotherapies would be funded under the NHS and therefore this topic tended to dominate the debate. Whilst this may seem to have little to do with current CLL treatments and does little to prove that each and every one of us will be given the best possible treatment at the point it is needed, it is an interesting development, not least because the cost of treatment is around £280,000 per patient and indicates that the NHS may be moving towards funding more novel approaches. Steffi had the opportunity to speak and did not mince her words on the need for fresh thinking on CLL given the increasing number of patients diagnosed, who languish on 'watch and wait', unknowing of their ‘deletions’ and ‘mutational status’. Steffi recommended both these tests should be carried out at diagnosis and could do much to remove the anxiety suffered by many who can only guess what the future holds. Steffi emphasised the stress caused to so many who had been denied ibrutinib on relapse, due to NHS England’s interpretation of NICE guidance; and what a joy it was when that decision was overturned! 

On 23rd November Henry Smith, MP made a most impassioned speech on behalf of those with blood cancers in which he mentioned CLL on a number of occasions. Stephen Hammond, in reply, was clear that the cancer dashboard must cover more than the four most common cancers and is determined to add blood cancers to that list. Catch his speech on YouTube – its well worth watching. 

If you have any comments on the above or would like to attend an APPG meeting when the next one is called, do, please get in touch with Steffi on steffi.sutters@cllsupport.org.uk.  

 

Good news from Leading Haematologists

Professor Anna Schuh of Oxford and Professor Chris Fegan of Cardiff have provided an easy to understand summary of the most recent developments in CLL treatment and the very encouraging outlook for patients to live a normal life span in this 20-minute video at the American Society of Haematology (ASH) conference in San Diego.

 

 

 

 

Knowing Me, Knowing You 

Continuing our introduction of CLLSA Trustees, we'd like to introduce you to three more key members of our team.

 

Steffi Sutters was diagnosed with CLL 18 months ago although blood tests indicate she had had it for some time. As a CLLSA Trustee Steffi hopes to make good use of her knowledge of public affairs to raise the profile of blood cancers. Steffi runs an architectural practice in London with her husband as well as being an elected Councillor on Wandsworth Council where she is Executive Lead for Community Services and Open Spaces. Steffi is beginning a role with Janssen pharmaceuticals in January as a member of the Patient Advisory Committee and Therapy Area Advisor (she is still to find out what the latter involves) and looks forward to reporting back to you on this exciting initiative.

 

 

 

Brian Gardom became a CLLSA trustee in 2017, having learnt quite a lot about the vagaries of CLL as a long-time carer. In a previous life Brian was an architect, inventor, and eventually had a factory in Birmingham manufacturing all kinds of products. His areas of interest in CLLSA include the Buddy scheme; battling with NICE for new treatments; representing CLLSA as an Administrator on HealthUnlocked; liaising with other charities to produce new guidelines; and fundraising. Away from CLLSA activities, Brian enjoys reading and travel.

 

 

 

 

Sarah Tobin became the CLL Support coordinator in May 2010. Sarah began by helping out with the administration and works with the Trustees in all aspects of the charity. Sarah is experienced in working in charities and data management. Originally from North Devon Sarah now lives in Wiltshire with her husband and three children. Sarah enjoys running and spending time with her family.

 

 

 

 

Until Next Time

Be sure to follow us on TwitterFacebook, and HealthUnlocked for all the latest information and discussion on CLL. Remember, every post you like, share and retweet helps to raise CLLSA's profile, allowing other people living with CLL to discover us. 

CLLSA is the only UK charity dedicated to providing education, support, and advocacy to help empower people living with CLL.

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