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!


Further cuts for stem cell transplants – for yet another rare blood cancer

Telegraph article from Saturday 13th of August– with further details about NHS England funding issues.

Patients with WM (Waldenstroem) are denied live-saving stem cell transplant treatment

You may have read or heard about the recent legal case involving a HIV patient advocacy group, NHS England and local commissioning groups. The outcome has been that NHS England is being legally forced to fund a new anti HIV treatment called Prep. NHS England is intending to appeal against the court decision – as it claims that NHS England does not have the funds.

As a further step, NHS England has announced that, as a consequence, they have no choice but to stop funding several other treatments for different groups of patients. Amongst the disease groups affected by this funding cut are patients with WM (Waldenstroem - a rare blood cancer) who require a stem cell transplant.

In support of our colleagues with WM, the Blood Cancer Alliance has issued the strongest objection regarding the way this issue is being handled by NHS England.

The letter, signed by Bloodwise, MDS UK and Leukaemia Care among others, reads:

Dear Sir

We are dismayed with the announcement last week that due to the High Court ruling on the commissioning of PrEP, NHS England has announced that access to nine treatments for other diseases that had previously been approved for NHS use are now on hold.

The example of one treatment, stem cell transplantation for patients with rare blood cancer Waldenström’s Macroglobulinaemia (WM), is particularly stark. Transplants for WM patients have been carried out successfully on the NHS for the past 10 years, and with this option now being withheld indefinitely pending the High Court appeal, patients will not have access to this last chance for survival. The withholding of these treatments has led to huge uncertainty and confusion for patients and clinicians.

There appears to be no valid or transparent process for why access to these treatments has been suspended by NHS England. For WM patients, this comes after the removal of the treatment bortezomib from the Cancer Drugs Fund last year, one of several blood cancer indications delisted for NHS use during 2015.

In suspending access to these treatments due to the legal ruling, NHS England is pitting one population of patients against another, which is hugely unfair to patients on all sides.

We demand that NHS England reinstates access to these immediately, and a long term, sustainable solution is found so all patients can continue to access the treatments they need at a cost the NHS can afford.

ACLT

Basil Skyers Myeloma Foundation

Bloodwise

CLL Support Association

Leukaemia Care

Lymphoma Association

MDS UK

Waldenström’s Macroglobulinaemia UK

And more background about this topic in the recent Daily Mail article here


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

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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.

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

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.

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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:

http://mdspatientsupport.org.uk/cancer-drug-fund-update/

http://mdspatientsupport.org.uk/consultation-on-proposed-changes-to-cancer-drug-fund/

http://mdspatientsupport.org.uk/cancer-drug-fund-news/

http://mdspatientsupport.org.uk/4520/

http://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.”


MDS World Awareness Day – 25th of October 2015

2015 MDS World Awareness Day: Video Stories

25/10/2015
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.

 

WP_20151002_043

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.

 https://www.facebook.com/MDS-UK-Patient-Support-Group-123295287687778/

www.mds-alliance.org


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

badgesphoto

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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!

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

 

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World Awareness Day 2015

 

World Awareness Day 2015

 

 

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