2nd Stem Cell Transplants Funding Re-instated Thanks to Your Support!

NHS England will fund 2nd stem cell transplants for patients whose blood cancer relapses

Since NHS England initially announced in December 2016 that it wouldn’t fund second transplants, more than 25,000 people joined our campaign to reverse the decision.

Thanks to every single person that signed the petitions, and wrote to their MPs. We all did it together.

Thanks to colleagues at Anthony Nolan, all other blood cancer charities, Emma Paine, Mark Tami MP, the APPG on Stem Cell Transplant, many MPs and clinicians, Sasha Jones and friends.

An extra-special thanks to the Hepburn family, who showed so much courage and campaigned selflessly after Gavin's death. We owe them a huge debt of gratitude.

Second Stem Cells Transplant Campaign

NHS Announcement in detail: routine funding for 2nd stem cell transplants for patients who relapse more than a year after their 1st transplant

On Friday 24 February NHS England announced that they will routinely fund second stem cell transplants for patients who relapse more than one year after their first transplant. This replaces the announcement in December 2016 that second stem cell transplants were ‘not currently affordable’.

Every year, a small number of patients with a blood cancer or blood disorder who have already received one stem cell transplant from a donor will unfortunately relapse (their disease will come back). For some of these patients, their doctor might recommend a second donor stem cell transplant. It is estimated that 16 to 20 people every year in England will need a second transplant because their blood cancer or blood disorder has relapsed.

This decision affects a small number of patients in England who:
• have received a first donor (allogenic) stem cell transplant;
• were in complete remission;
• subsequently relapsed more than 12 months after their first transplant; and
• their doctor now recommends a second stem cell transplant.

This decision does not affect patients who suffer graft failure (their first transplant fails) or patients who have received a first transplant using their own cells (autologous). This decision only affects patients in England; patients in other parts of the UK are not affected.

Why does this decision only apply to patients who relapsed more than 12 months after their first transplant?

The recommendation of clinical experts is that patients who relapse more than 12 months after their first transplant have the best chance of a successful second transplant. Unfortunately, there is weak evidence for the effectiveness of second transplants for patients who relapse within a year of their first donor transplant.

Read More: Blood and Marrow Transplantation

Join the Register!

MDS Awareness Day 2016 – Tuesday 25th October

MDS World Awareness Day – Preparations for 2016

October 25th is being marked by a global community of patients, patient groups and professionals supporting people living with MDS as MDS World Awareness Day.

We are preparing for MDS Day 2016, Tuesday 25th of October, to make it an exciting day for patients and their families and increase the visibility and public knowledge about the disease.  Please contact us if you’d like to participate in any events around the country.

Look at the amazing videos sent by MDS patients and their families for MDS World Awareness Day 2015!

LIFE BEYOND LIMITS - MDS World Awareness Day - In Spanish with English subtitles

Urgent – CDF solution for Blood Cancer drugs

nhs england - logoThe 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



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.


About the Blood Cancers Alliance

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.

*********           *********          ********           ********           *********

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:







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.”

MDS World Awareness Day – 25th of October 2015

2015 MDS World Awareness Day: Video Stories

Some of our true champions for MDS awareness have shared their stories with us. Watch their video clips and share them in support of MDS World Awareness Day 2015!

Emma Paine: What happens when you need a second transplant?

Emma is an MDS patient.  She had a first stem cell transplant in 2011 – and recovered well.  Until now.

She is currently in hospital having chemotherapy and urgently needs a second transplant.
BUT – funding for second transplants is being revised in the UK – due to “cost-effectiveness” issues.
18 months ago, Emma would have received her potentially life-saving transplant without a problem.
Given the current NHS financial crisis, and new clinical data on the success of 2nd transplants after a relapse, the Dept of Health has tightened the rules relating to this procedure – and hospitals all over the UK need to seek special funding requests for those patients (IFR=Individual Funding Requests)

To date it is not certain whether Emma will receive the transplant or not.
Click here to follow Emma blog about her experience and her battle to be granted a further chance to live: Emma’s Fight against MDS

Raising awareness of mds day #mdsworldawarenessday #mdsukpatientsupportgroup

Posted by Emma Paine on Sunday, 25 October 2015

Olivia, Tilly and Ellis Hepburn make an appeal

Olivia, Tilly and Ellis, MDS super heroes and children of Lisa and Gavin Hepburn, are making an appeal for people to donate blood and stem cells to save lives of people like their Dad, who has MDS.

Lisa told us: “Today is MDS Awareness Day. Three years ago we hadn’t even heard of this disease. That’s why today is so important to make people aware. We are so grateful to the person that gave Gavin his donated bone marrow, and to the endless people that donate blood. To everyone that has helped, supported and been a shoulder to cry on these past years we are so grateful to you too…”

Their wonderful clip has already been viewed over 12,000 times on Facebook. Please keep sharing it! Thank you – on behalf of the entire MDS community.

Today is MDS Awareness Day. Three years ago we hadn’t even heard of this disease. That’s why today is so important to make people aware . We are so grateful to the person that gave Gavin his donated Bone Marrow, and to the endless people that donate blood. To everyone that has helped, supported and been a shoulder to cry on these past years we are so grateful to you too …

Posted by Lisa Hepburn on Sunday, 25 October 2015




5 ways you can help to raise awareness about MDS

We are asking all patients, families, clinical staff, supporters to post photos or short video clips of themselves on all social media platforms, to raise awareness of this rare blood cancer MYELODYSPLASTIC SYNDROME.



wad poster 2015


All our colleagues and friends worldwide will be doing the same and will post messages online on the 25th October. See our Facebook page for more clips, and photos and the MDS Alliance website for links to all international groups marking MDS Day.



1. Record and share a video clip. You can use the message below as an example:

Hello – my name is ……. I am an MDS patient.
(or I am an MDS Supporter – son/daughter/spouse/brother/sister/parent/friend/colleague/neighbour of an MDS patient).
Please share my message in support of the rare blood cancer MyeloDysplastic Syndromes – and the MDS World Awareness Day on 25th October.
Please support the MDS UK Patient Support Group and the international MDS Alliance.
Help to register more stem cell donors and blood donors.
Be a star.
Thank you.

2. Share these messages of MDS patients and supporters with your family and friends

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



3. Share all photos and videos using the hashtag #MDSworldawarenessday



4. Organise a coffee morning or tea afternoon to show your support and use the posters below

PDF poster MDS WAD POSTER A4 Oct2014

PDF version: WAD2015

Take your photo with the posters clearly visible!


5. Share your photos with the poster. Some lovely ones below



WP_20151002_054web   WP_20151002_052web











World Awareness Day 2015


World Awareness Day 2015










19th Congress of the European Hematology Association – 12th-15th June 2014

EHA logo

19th Congress of the European Haematology Association (EHA) has taken place this year between 12th and 15th June in Milan, Italy.

This event is set up for physicians and representatives of patient support groups to  promote excellence in patient care, research and education in haematology.

As part of the Worldwide Alliance of national MDS Patient support and advocacy groups, MDS UK representative – Sophie Wintrich – attended this event to better serve the MDS patient and caregiver community.Print
We have provided below a brief summary of the Patient Advocacy Track and activities.
As usual, interesting MDS clinical news and updates will be provided separately and posted on our website, Facebook and our Newsletter 6.
This year Dr Wendy Ingram in Cardiff kindly agreed to write up on MDS News at EHA.

This year for the first time, the EHA congress program is complemented by a dedicated Advocacy Track. This track combines all patient and policy related sessions into one, comprehensive yet very diverse program for those interested in advocacy in haematology, patient advocacy and other related topics; and will involve:

  • EHA Patient Advocacy Booth (booth #206)

This is a central meeting place of all patient advocates and their peers

EHA booth1-web   EHA booth3-web

  • Patient Advocates Meeting (FRI 11:30-12:30, Room Yellow),

This is a meeting for all patient advocates in order to strengthen collaboration and links between our patient advocacy groups

EHA patient meeting1-web   EHA patient meeting3-web

  • Patient Advocacy Session “Generics in Haematology: The doctors’ and patients’ perspective” (Sat 8:00-9:15, Room Amber 5+6 SW 2)

This session will outline how patients can be involved as partners in clinical research and how the challenges of informed consent, trial results, and ethics in bio banking can be turned into opportunities.
EHA19 Chair Comments – Part 1 – Generics in Hamatology: The doctors’ and patients’ perspective
Jan Geissler

EHA19 Chair comments – Part 1 – Generics in Hematology: The doctors’ and patients’ perspective
Androulla Eleftheriou

Drug quality in generics, substandard drugs, copies – the pharmacologist perspective
Atholl Johnston

Use of generic drugs and discussions with the government on drug quality
Mahmoud Hadipour Dehshal

The hematologists’ clinical perspective
Ivana Urosevic

The patients’ perspective
Sarunas Narbutas

VIDEO clips of all talks here

  • Patient Advocacy Session “The challenges of young patients with old people’s diseases” (Sat 9:30-10:15, Room Amber 5+6 SW 2

Old people’s diseases in young patients with chronic rare anaemias, Sexuality, fertility, family planning in haematological diseases.

  • ESH-EHA Joint Symposium “What do you mean, he can’t have the treatment?  An interactive session for haematologists and patients” (Sat 11.45-12.45, Amber 5+6 SW2)

This  renowned interactive EHA/ESH Joint Symposium will deal with how to explain to a patient that he/she can no longer receive treatment that is endorsed by national guidelines as her/his best option, or, in short: ‘what do you mean, I can’t have the treatment’?
EHA-ESH session-web

This interactive role playing session showed the importance of doctor patient communication in consultation – as well as patient – family interaction.  MDS UK gets many calls from patients who don’t feel comfortable asking too many questions, or requesting an additional opinion from an MDS expert at a Centre of Excellence.  Doctor patient communication is sometimes not easy for either party, especially when it comes to difficult diagnosis – but it can be improved.

  • EHA-ASH Joint Symposium “Access to medicines and fair pricing: The cost of innovative drugs” (Sat 14 June, 13:15-14:15, Room Silver, NW 2)

This EHA/ASH Joint Symposium will present a transnational view on the effects of the financial and economic crises, happening against a backdrop of an ageing population and an increasing prevalence of non-communicable diseases that weighs down heavily on health care budgets.
EHA-Drug price-web     EHA-drug price2-web
This was a really interesting session, inviting Prof JL Harousseau (ICO, France) and R Bergstroem, (EFPIA), to discuss the reasons why drug prices are so high.
Prof Harousseau is professor of haematology at the University of Nantes, France and Chairman of the French National Authority for Health (HAS). HAS can be compared to NICE, but operates more independently from Government.  He was questioning why more can’t be done to lower prices by using drug volumes.  He also asked why drug prices are identical, whatever the added benefit.
R Bergstroem is head of EFPIA: The European Federation of Pharmaceutical Industries and Associations represents the pharmaceutical industry operating in Europe.
He argued that Research and Development costs of past and future drugs need to be paid for, and that industry researchers are entitled to become millionaires or multi-millionaires (sic) should their drugs be effective and successfull.   Marketing of those drugs also needs to be paid for.

We thought that the questions were extremely good ones, but sadly, the head of EFPIA failed to raise to the challenge to answer them in a tone and professionalism this EHA audience of doctors and patient advocates expected.  Very disappointing.
The topic of drug prices is a truly difficult one – and will require a lot more flexibility from all involved to make innovative drugs available.

VIDEO – JP Harrousseau at EHA 2014

  • EHA Advocacy Session “The Future of Haematological Research in Europe” (Sat 14 June, 16:15-17:30, Room Amber 5+6, SW 2)

This is EHA’s own advocacy session highlighting EHA’s advocacy work and illustrating the importance of politics by the case of personalised medicine.

  • Scientific Working Group on Quality of Life (Thurs 18.30-20.00)

We welcome the addition of the Advocacy Track to the EHA congress programme and encourage our members to access the webcasts of the relevant sessions, which will be freely available to all on EHA website.

We will also post them on our website – when they become available – and open them up for comments on our on-line discussion forum.

We just added some photos of the EHA congress and the very successful Patient Advocacy Track, attended by many physicians and patient advocates from all over the world.

We thank the EHA Board again for their continued support, partnership and cooperation with patient advocates and look forward to EHA 2015, with some exciting new themes for the now very well established EHA Patient Advocacy Track.
We also congratulate this year’s EHA President Dr Christine Chomienne and all of the EHA teams and contributors for the most successful EHA congress to date – with an amazing 10.400 attendees.
And many thanks to patient advocate Jan Geissler from EUPATI and CML Advocates, for being such a strong and passionate spokesperson for all patient advocacy issues.
Finally thank you to all patient support group representatives and colleagues who attended EHA this year, helped man our patient advocacy booth, answered physician queries and requests and contributed to all patient advocacy sessions.
We hope to see many more of you at EHA 2015 in Vienna!

UPDATE – SEPTEMBER 2014 – video clips of most talks are now available from the EHA website:

Videos for 2013 EHA Advocacy sessions are available here:
EHA Advocacy 2013 – talks

 EHA booth4-web

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