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Urgent – CDF solution for Blood Cancer drugs
The Cancer Drug Fund (CDF)
de-listing further drugs
Many blood cancer patients are about to face more severe issues of access to treatment, following the announcement that the CDF is de-listing further drugs in order to balance its budget.
Twelve of these are blood cancer drugs.
None of the cuts affect MDS patients, but the principle is at stake – and the future funding of all cancer drugs for all cancer patients.
The Blood Cancers Alliance, an informal group of all blood cancer charities, has now written to David Cameron and Jeremy Hunt to urge them to find a suitable solution to this wholly unacceptable situation.
The open letter is copied here and will be published in the Times newspaper today Wedn 4th Nov 2015.
Please share it widely, including your MP.
This letter is also appearing on all websites of the Blood Cancers Alliance members.
Open letter to Rt Hon David Cameron MP and Rt Hon Jeremy Hunt MP:
Blood cancer charities urge Government for Cancer Drugs Fund solution
As an alliance of blood cancer charities, and on behalf of the 27,000 blood cancer patients and their families who have signed the petition against the delisting of life-saving drugs from the Cancer Drugs Fund (CDF), we are writing to express our concern regarding the Government’s failure on the CDF.
The Government is aware of the flawed nature of the CDF, but due to politics, has let it progress to the situation where clinically effective treatments are today being removed without a long-term solution to access.
The CDF is majorly overspent and no data has been collected on whether or not any CDF-funded treatments have actually worked. As a result of these failures 12 blood cancer drug indications, previously deemed clinically effective, are set to be removed from the Fund with no guarantee of future access.
While the CDF has improved access to cancer drugs not routinely available in NHS England, it was always intended to be a temporary solution while a long-term pricing mechanism was worked out. The proposed consultation on the CDF has taken too long to materialise, and as the new CDF system is set to be in place from April 2016, the time is rapidly decreasing for stakeholders to shape a system that is fit for purpose.
Through the revised CDF and Accelerated Access Review, there is a real opportunity to put patients at the heart of the system and ensure they are able to access the most innovative medicines. This is an opportunity that the Government can no longer afford to miss.
Yours sincerely
Blood Cancers Alliance
Eric Low OBE
Chief Executive – Myeloma UK
Sophie Wintrich
Chief Executive – MDS UK
Sandy Craine
Chief Executive – CML Support
Roger Brown
Chair – WMUK
David Innes
Chair – CLL Support Association
Monica Izmajlowicz
Chief Executive – Leukaemia CARE
Jonathan Pearce
Chief Executive – Lymphoma Association
Cathy Gilman
Chief Executive – Bloodwise
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PETITION
The petition can still be signed by following this link – Don’t cut life saving blood cancer drugs
It is a 38 degrees action – which we highly recommend as an organisation.
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About the Blood Cancers Alliance
- The Blood Cancers Alliance (BCA) is an informal coalition of charities representing the blood cancer community
- The BCA meets regularly to discuss and share information on policy issues that impact on blood cancer patients
- The BCA is currently made up of the following charities:
- Myeloma UK https://www.myeloma.org.uk/
- Bloodwise https://bloodwise.org.uk/
- WMUK http://www.wmuk.org.uk/
- MDS UK https://mdspatientsupport.org.uk/
- Lymphoma Association http://www.lymphomas.org.uk/
- Leukaemia CARE http://www.leukaemiacare.org.uk/
- CML Support http://www.cmlsupport.org.uk/
- CLL Support Association http://www.cllsupport.org.uk/
About blood cancers
- Every year around 34,000 patients are diagnosed with a blood cancer
- The main blood cancer groups are leukaemia, lymphoma and myeloma, although there are over 130 types of blood cancer
- Blood cancers account for around 1 in 10 cancer[1] diagnoses in the UK
Blood cancer drugs identified for delisting:
| Drug | Cancer | |
| 1 | Bendamustine | Relapsed mantle cell lymphoma |
| 2 | Bendamustine | Relapsed chronic lymphatic leukaemia |
| 3 | Bosutinib | Accelerated phase chronic myeloid leukaemia |
| 4 | Bosutinib | Chronic phase chronic myeloid leukaemia (restricted to subgroup of patients significantly (grade 3 or 4) intolerant to nilotinib and dasatinib) |
| 5 | Brentuximab | Relapsed anaplastic large cell lymphoma |
| 6 | Brentuximab | Relapsed Hodgkin’s lymphoma |
| 7 | Dasatinib | Philadelphia chromosome positive (Ph+) acute lymphoblastic leukaemia |
| 8 | Ibrutinib | Relapsed mantle cell lymphoma |
| 9 | Ibrutinib | Relapsed or refractory chronic lymphatic leukaemia (except where patients are contraindicated to rituximab and idelaisib or significantly intolerant to idelaisib) |
| 10 | Idelalisib plus rituximab | Relapsed chronic lymphatic leukaemia |
| 11 | Lenalidomide | Relapsed myeloma |
| 12 | Pomalidomide | Relapsed myeloma |
[1]NCIN Data briefing. 2013. Registrations for Blood Cancers in England.
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More background information about the Cancer Drug Fund
We have published several News Posts regarding the CDF on our website over the last 2-3 years:
https://mdspatientsupport.org.uk/cancer-drug-fund-update/
https://mdspatientsupport.org.uk/consultation-on-proposed-changes-to-cancer-drug-fund/
https://mdspatientsupport.org.uk/cancer-drug-fund-news/
https://mdspatientsupport.org.uk/4520/
https://mdspatientsupport.org.uk/interim-cancer-drug-fund-how-does-it-work/
Here is also the official NHS website information – via the NHS England – CDF website:
“On 1 April 2013, NHS England took on responsibility for the operational management of the Cancer Drugs Fund (CDF). The NHS spends approximately £1.3 billion annually on the provision of cancer drugs within routine commissioning. The CDF was established as an additional funding source to this.
The CDF has provided an additional £200m each year since then to enable patients to access drugs that would not otherwise have been routinely available from the NHS. NHS England recently pledged an additional £160m over the next two years to strengthen the fund. It was established in 2010 and will run until the end of March 2016.
There is a single, national list of drugs and indications that the CDF will routinely fund and standard operating procedures for administration of the fund.”
It's #MDSWorldAwarenessDay tomorrow. Please click on my video to see how you can help! #MDSUKPatientSupportGroup
Posted by Jenny Milne on Saturday, 24 October 2015
It's #MDSWorldAwarenessDay tomorrow. Please click on my video to see how you can help! #MDSUKPatientSupportGroup
Posted by Jenny Milne on Saturday, 24 October 2015
Question Prompt List to help meet the information needs of MDS patients
What do UK MDS patients say about the information they receive at diagnosis?
According to UK MDS Survey:
- Over half of respondents agree that their needs for verbal information on MDS have been met sufficiently. For the remaining 46% the provision of verbal information could be improved on.
- Usefulness ratings of verbal information provided vary across patients.
- Over one third of respondents have not been provided with any written information on MDS
- Majority of those who received the written information, rate it as highly useful
100 Q&A book on MDS – revised edition
100 Q&A book on MDS – revised edition
We have the latest revised edition of the really helpful 100 Questions & Answers book on MDS available from our office – free of charge to patients.
Some of you may have been given the initial 2008 edition, which we distributed a few years ago – and was extremely popular amongst our members.
For those of you who don’t know it – this is a patient friendly book on MDS, providing detailed information on several aspects of MDS, including chapters on :
• What is MDS?
• Is it a cancer?
• How is MDS diagnosed?
• What’s the best treatment for me?
The latest version was published in July 2015 and includes the revised MDS prognostic score – IPSS-R.
The book is fully endorsed by MDS experts, the MDS Foundation, the MDS Alliance, and or course MDS UK Patient Support Group.
Please note, the 100 Q&A book on MDS is a publication written for a USA patient audience. Some of the drugs may not yet be available in the UK/Europe and some of the measurements for blood counts may differ. Please contact us if you if you have any queries.
Display copies for your hospital
We will provide a display copy at all major hospitals, alongside our leaflets and newsletters. Please let us know if you’d like to have a display copy for your hospital – so that more patients can take advantage of the information.
As a not for profit organisation, MDS UK was very kindly given a price discount by the publishers – Jones & Bartlett Learning – for which we are extremely grateful!
As we are offering the booklet for free to patients, we still have to raise some funds to purchase further copies.
If you are able to help make this booklet available to more patients, please consider donating towards this project via this Virgin Money Giving page.
Survey in Europe – Measuring Quality of Life
London School of Economics Survey about how quality of life is measured and reported in Health Technology Assessments (HTA)
28/05/15
Another survey for patients and carers to take part.
HTA organisations, such as for example NICE (National Institute for Clinical Health and Excellence) mostly use a questionnaire called the EQ-5D to measure the impact of an illness. From our experience with MDS patients, we have found this EQ-5D questionnaire inadequate to reflect the various issues faced by our group of patients. This survey is an opportunity to test and evaluate this widely used questionnaire.
TV programme on rare diseases
Tigress Productions looking for volunteers for programme on rare diseases – 28/05/15
We have been contacted by a TV production company – Tigress Productions – who are looking for patients with a rare disorder – and had problems getting diagnosed.
MDS would be ideally suited for this, as many patients often take a while to be diagnosed, despite odd blood results or symptoms.
If you are interested in taking part, and would be willing to talk about your diagnosis experience on camera, please get in touch with the production team.
They are looking for up to 3 people for this documentary.
Here are further details about the programme:
Tigress Productions has just started to produce a new six part series for a terrestrial broadcaster with the working title ‘Medical Mysteries’. Each programme will follow the personal journeys of people who have suffered from or are in the process of trying to diagnose/treat a medical mystery.
The aim of the series is to raise awareness about lesser known ailments, showcase revolutionary new treatments, and also show our audience in detail how the diagnosis process works – often patients are left wondering why their GP has taken a certain course of action; rare conditions offer us the opportunity to follow a doctor thought process from beginning to end.
The mystery doesn’t have to be that mysterious – it just has to pose a specialist with a number of options in terms of finding a diagnosis. A key aspect of this programme will be the detective story – how a consultant or GP have interpreted the symptoms, the tests that they have chosen and why.
Tigress Productions would like to speak to people with medical mystery experiences for a new TV documentary series.
Please call 0117 933 5654/ 0117 933 5609
or email medical@tigressproductions.co.uk for more information
A bit about us; Tigress Productions, part of the Endemol Group, are producers of inserts of The One Show (BBC1) and other shows as Winter Viruses and How To Beat Them (BBC2) and Africa 2013: Countdown to the Rains (BBC2).
EHA SWG “Symptoms and Quality of Life” Survey – please take part!
FOR THE ATTENTION OF MDS PATIENTS
Please find below information about the new and exciting research project in quality of life of people suffering from haematological malignancies. Please help ensure MDS patients are sufficiently represented and take part as soon as possible, the results are needed very soon!
“The European Haematology Association Scientific Working Group (EHA-SWG) ‘Symptoms and Quality of Life’, is undertaking a study to investigate the symptoms and impacts associated with haematological malignancies as well as their treatments. In addition, the information collected will be used to develop a novel questionnaire to measure symptoms and quality of life in haematological malignancies such as MDS. It is envisaged that this study will lead to a better understanding of the experience and needs of patients in relation to their illness in routine clinical practice. Further, this offers an opportunity to involve patients in treatment decision-making more systematically, overall leading to improved care for patients with haematological malignancies.
This study has already received ethics approval by the NRES Committee South West – Central Bristol. Undertaking the study requires gathering information from individuals with haematological malignancies such as MDS, on their experiences of living with their condition. As such, I would like to invite you to take part in this study. Before you can make up your mind on whether to take part, it is important for you to understand why this research is being done and what it will involve. Please take time to read the information sheet (click here to see) provided. We cannot promise that the study will help you directly, but the information that we get from this study may help improve the care provided to other patients with your condition. This may be completed on several sittings.
In brief, your participation in this study will not involve any clinic visits. You will be asked to complete an online survey (with mostly open ended questions), which requires 45 minutes to 1 hour to complete. The survey includes questions about symptoms and impacts you have experienced as a result of your condition.
All information you will provide will be treated as confidential. Results of analysis of all information collected will be presented at international scientific conferences and published in scientific journals. Such results will not include your name or any other personal information.
The online survey can be accessed by visiting the following website: https://surveys.eu.qualtrics.com/SE/?SID=SV_bxba7sVJGiufnwh
If you have any questions regarding the survey, please contact Paul on 07768529783 or qol@eha-swg.com or Prof Sam Salek on 07763574022.
Yours faithfully”
Paul Kamudoni
Study Coordinator
EHA-SWG “Symptoms and Quality of Life”
106 Shepherd’s Bush Road
W6 7PD
London
New Deputy Chairman at MDS UK
MDS UK has a new deputy chairman – 21/05/15
We are very happy to announce the election of Russell Cook as a new Deputy Chairman for MDS UK.
Russell has been a Committee Member since 2014, then Trustee and Director since early 2015.
Russell had a life-saving stem cell transplant 3 years ago, to treat MDS – Myelodysplastic Syndromes. The stem cell donor was his son Luke. Russell has since ran several marathons and organised several brilliant fundraising events for MDS UK.
We very much welcome him in his new role, and look forward to continued work with him.
You can read more about Russell on our Committee webpage
And on our Patient story page.
John Taylor – who was our Deputy Chair to date has stepped down from the role due to health reasons – but will remain on the Committee as a trustee, in an advisory capacity due to his in-depth knowledge of the Charity Commission regulations.
We take this opportunity to thank John for his excellent work – and are most grateful for his continued guidance and advice going forward.
More information on John Taylor here
Our current Chairman – Rodney Taylor – is continuing in his role. He is gradually recovering from the stem cell transplant he received in July 2014.
As MDS patients will know – recovery from a stem cell transplant is a slow and often very tiring process. Rodney is therefore stepping back slightly and temporarily, whilst Russell will cover the work in his new role of deputy chairman.
We wish Rodney continued best wishes with the recovery – and hope to welcome him back very soon.
More information on Rodney on our Committee page – as well as on our treatment information page – under azacitidine – which he received for over 4 years – until he stopped responding to this drug and needed to have the stem cell transplant. Read here.
MDS UK is also calling for new volunteer trustees.
If you are interested in applying for such a post – please check the following link in the first instance: Trustee role – What’s involved
MDS UK would like to hear from you, in particular if you are an MDS patient yourself, or connected to an MDS patient in some way.
Please contact us by email or letter, explaining why you wish to be considered as a trustee and how your skills or experience may benefit the charity.
We may then contact you by phone and request relevant references.
Please email: swintrich@mds-foundation.org
Or write to:
Sophie Wintrich
MDS UK Patient Support Group
Haematology – Bessemer Wing
King’s College Hospital
London SE5 9RS
We are also looking for a Newsletter Editor
If you have good knowledge of MDS, and/or the healthcare industry, and enjoy proof-reading – we would like to hear from you.
Our newsletter goes out twice a year to all our members and most of the haematology departments in the country.
See all our Newsletter here.
Our current Newsletter Editor – Chris Dugmore – is stepping down – as she is about to become a Grandmother twice over.
Chris is staying on as a Committee Member however – and of course as coordinator of our Essex MDS patient group.
We’d like to thank her profusely for her fantastic work with the last 5 newsletters. We regularly have great feedback from patients, carers and staff – thanks to her great input.
We wish her all the best in her Grandma role and hope all goes extremely well with both births!
Please email: swintrich@mds-foundation.org
International Clinical Trials Day 2015 – 20th May
Each year, the International Clinical Trials Day, is celebrated around the world on or near 20th May to commemorate the anniversary of what is considered the first clinical trial – conducted by James Lind, a Scottish naval surgeon, in 1747 on the deadly disease scurvy.
This day provides a focal point for international communication events, meetings, debates, and celebrations of clinical research, which contribute to development of new and more effective treatments, ways of looking after patients and keeping people healthy.
Every year a significant number of MDS patients take part in clinical research to help experts evaluate the latest treatments for MDS and to help other patients in future. Often, research participation allows MDS patients access to potentially beneficial treatments, which they would not be able to access otherwise.
Considering the benefits of clinical research, the International Trials Day aims to raise awareness of the importance of research to health care and highlights how partnerships between patients and healthcare practitioners are vital to high-quality, relevant research. This is why a number of healthcare providers, researchers, universities and public bodies, all over the country, are hosting series of activities, meetings, events and gatherings to involve public in the research they do.
“OK to ask” is the National Institute for Health Research campaign to encourage more patients or carers to ask about research opportunities that could be available to them or their loved ones, if they have a medical condition they are receiving treatment for. Currently, recruitment into clinical trials is largely clinician-led. The aim of the “OK to ask” campaign is to change that. Click here to find out more about the National Institute for Health Research and their campaign.
Don’t hesitate and find out how the Clinical Trials Day will be celebrated in your area – and get involved!
In particular, we would like to highlight a host of activities taking place at Barts Health in London, between 20 and 29 May 2015, for patients and members of the public, as well as staff, to find out about their many different research studies and ways to get involved.
Please click here to see the full schedule of activities for the Clinical Trials Day at Barts Health.
“Clinical Trials: Why bother?” talk by Professor Atholl Johnston, may be of particular interest to our patients. We spoke to Prof Atholl Johnston at the last European Heamatology Association (EHA) Congress, where he delivered a very useful and insightful presentation on Drug quality in generics, substandard drugs, copies – the pharmacologist perspective.
