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

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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.

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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.”


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