WMUK News

Ibrutinib approved for CLL- can WM be far behind?

Ibrutinib approved for CLL- can WM be far behind?

25-Nov-2016

NICE has announced that Ibrutinib (Imbruvica® ) is to be approved for use in relapsed Chronic Lymphocytic Leukaemia. This removes it from the Cancer Drugs fund into routine commissioning. Ibrutinib in relapsed WM and Mantle Cell Leukaemia both await NICE decisions. In relapsed WM (and those not suitable for conventional chemo-immunotherapy), Janssen have applied to put the drug into the new Cancer Drugs Fund.
You can download the Janssen press release which mentions WM.

Final - Imbruvia NICE FAD medical press release 25.11.16 .pdf

NICE announced on 25th November that it has finally approved Ibrutinib for use under the complete licence for CLL, by NHS England, moving it from the Cancer Drugs Fund into routine commissioning .
Imminent decisions are awaited on its use in Mantle Cell Leukaemia and WM. 

Ibrutinib was licensed for use in the EU in WM in June 2105, but it has taken 17 months so far to achieve funding by NHS England. It is widely available for the three related diseases in Europe and North America.  WMUK has spent hundreds of hours with specialist WM doctors, supported by 22 specialists in the WMUK Doctor Forum, and we presented at the three NICE meetings so far, the second of which of which proposed provisional refusal. The result of the November meeting is awaited. If CDF approval is given, Janssen, NICE and WMUK aim to  work together to collect further data for at least two years on its effectiveness through the Rory Morrison Clinical Registry, set up and financed in 2015, largely your patient donations. 

NICE agreed with WMUK that it represented a step change in treatment and that WM has a significant unmet treatment need, but has to date declined to fund it.  

Ibrutinib is taken orally, and for a majority of relapsed patients turns WM into a chronic disease, but must be taken daily for life or until the disease progresses.

Download the Janssen release here Janssen CLL Release



 
DEPARTMENT OF HEALTH, NORTHERN IRELAND ANNOUNCES EASIER ACCESS TO TREATMENT FOR CANCER PATIENTS

DEPARTMENT OF HEALTH, NORTHERN IRELAND ANNOUNCES EASIER ACCESS TO TREATMENT FOR CANCER PATIENTS

11-Oct-2018
Department of Health, Northern Ireland issued a press release outlining plans for 'Improved Access to New Drugs' to cancer patients in Northern Ireland and announced plans to introduce changes to ensure that all patients have the same access to cancer drugs and treatment options as the rest of the UK.

Ibrutinib finally approved for WM

Ibrutinib finally approved for WM

28-Sep-2017
Ibrutinib, the BTK inhibitor marketed by Janssen has been approved (subject to a 15 day appeal period) for Waldenstrom patients by NICE to enter the Cancer Drugs Fund to treat relapsed patients and those not suitable for chemo-immunotherapy. Read our 28th September press release below! The roll out of the Rory Morrison Registry Project can now take place nationwide, and your support will be vital to expand the number of data collection hospital centres.

WMUK helps make Blood Cancer Visible

WMUK helps make Blood Cancer Visible

14-Sep-2017
8 WMUK volunteers- with our Patron Charlotte Green leading the event- volunteered to be part of the MBCV in September at Paternoster Square, next to St.Paul's Cathedral. This consisted of 104 installations representing the first names and heights of the number of people diagnosed each day with blood cancer, created by artist Paul Cocksedge. Each installation had the patient's story. Watch the video! Pictures below!

Seb's Video Tale- newly diagnosed

Seb's Video Tale- newly diagnosed

07-Jul-2017
Seb's inspirational talk about being diagnosed is compulsive viewing for the younger diagnosed patient.

WMUK Guide to WM updated

WMUK Guide to WM updated

01-May-2017
WMUK's popular guide to WM, authored by WMUK Trustee Dr Shirley D'Sa of UCLH has been updated and can be viewed/downloaded as a PDF.

WMUK joins in letter to PM on healthcare rationing

WMUK joins in letter to PM on healthcare rationing

19-Feb-2017
WMUK, a member of the Specialised Healthcare Alliance, has signed a letter to Theresa May calling for fair treatment for patients with rare and complex conditions. The Observer and Guardian carried the story on Sunday 19th February.

Transplants in WM reinstated!

Transplants in WM reinstated!

04-Dec-2016
NHS England announced today that stem cell transplants in WM would be funded, ending months of speculation when the proposed policy was held back in August pending the court decision on PrEP. Thanks go to all our community, supporters and members of fellow blood cancer charities in raising the issues of proper treatment for this disease, particularly in signing a 12,000+ strong petition in Parliament.
Particular thanks to Harriet (pictured) and Sandra who stood up and were counted,driving the campaign. Both have now had their transplants and are back home recovering.

Ibrutinib approved for CLL- can WM be far behind?

Ibrutinib approved for CLL- can WM be far behind?

25-Nov-2016
NICE has announced that Ibrutinib (Imbruvica® ) is to be approved for use in relapsed Chronic Lymphocytic Leukaemia. This removes it from the Cancer Drugs fund into routine commissioning. Ibrutinib in relapsed WM and Mantle Cell Leukaemia both await NICE decisions. In relapsed WM (and those not suitable for conventional chemo-immunotherapy), Janssen have applied to put the drug into the new Cancer Drugs Fund.
You can download the Janssen press release which mentions WM.

Make Blood Cancer Visible (MBCV) - 2018 Campaign

Make Blood Cancer Visible (MBCV) - 2018 Campaign

03-Oct-2018
JOURNEY OF THE MBCV 2018 ROADSHOW

Heroic School Bake for Waldenstrom Research

Heroic School Bake for Waldenstrom Research

19-Jul-2017
8 Year 4 pupils at Holy Cross Primary Academy, Hucknall, took on a cake baking challenge for their fete to raise money for Waldenstrom Research, as they were so concerned when one of their relatives was diagnosed with WM

Village Quiz raises £7,000 for WMUK

Village Quiz raises £7,000 for WMUK

30-Dec-2015
The Peire family aided by their friends at High5 Events raised a fantastic £7,000 in their village hall quiz at Barton-Le-Clay, Bedfordshire

WMUK & Blood Cancers Alliance lobby health minister

WMUK & Blood Cancers Alliance lobby health minister

04-Nov-2015
WMUK joined the Blood Cancers Alliance to fight for better treatment for blood cancer patients. Read the Alliance open letter to Rt. Hon. Jeremy Hunt MP, Secretary of State for Health- then sign the petition and tell your friends!

Laugh4Rory Now tops £8K!

Laugh4Rory Now tops £8K!

01-May-2015
Rory's BBC Radio colleagues Susan Calman, Jeremy Hardy Isy Suttie, Elis James,Andy Hamilton and John Finnemore raised over £8,000 for the Rory Morrison Cinical Registry at RADA

Run4Rory- £4000+ raised for the WM Registry

Run4Rory- £4000+ raised for the WM Registry

03-Aug-2014
Rosie Durham ran in the Womens' Running 10k race in Bristol on 2nd August and has raised over £4000 to date for the Rory Morrison Clinical Registry. See the WMUK page at https://www.justgiving.com/wmuk for more ideas about sponsored events.

Newsletter Number 3, March 2014 available now!

Newsletter Number 3, March 2014 available now!

15-Mar-2014
Download or read the new newsletter

New Guide to WM published by WMUK

New Guide to WM published by WMUK

25-Mar-2014
This new guide is written for WMUK by Dr Shirley D'Sa of University College Hospital London

THREE INTERESTING DANA FARBER ARTICLES ON WM TREATMENT

THREE INTERESTING DANA FARBER ARTICLES ON WM TREATMENT

18-Dec-2011

TRIAL SHOWS RITUXIMAB SUPERIOR TO WATCH AND WAIT

TRIAL SHOWS RITUXIMAB SUPERIOR TO WATCH AND WAIT

01-May-2012

WMUK APPOINTS RUPINDER BANCIL AS AN ADMINISTRATION OFFICER

WMUK APPOINTS RUPINDER BANCIL AS AN ADMINISTRATION OFFICER

12-Oct-2018
Rupinder has become part of the WM family in the capacity of an Administrator to deal with day-to-day tasks of the charity and to support the Trustees in their work.

WMUK APPOINTS SANDRA INGRAM AS A TRUSTEE AND CHARITY TREASURER

WMUK APPOINTS SANDRA INGRAM AS A TRUSTEE AND CHARITY TREASURER

11-Oct-2018
WMUK continues to grow with our newest addition, Sandra Ingram as our Patient Trustee and Treasurer

WMUK WELCOMES ERIC LOW AS AN INVALUABLE ADDITION TO OUR BOARD OF TRUSTEES

WMUK WELCOMES ERIC LOW AS AN INVALUABLE ADDITION TO OUR BOARD OF TRUSTEES

12-Oct-2018
Eric Low, former Chief Executuve and founder of Myeloma UK, has joined WMUK Board of Trustees. Eric brings with him invaluable knowledge and experience to carry forward the vision of WMUK.