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11
Aug
Transplants for Waldenström’s Macroglobulinemia put on hold

written by

Leukaemia Care, Charity

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Today, nine blood cancer charities, including Leukaemia CARE are calling for action as funding for stem cell transplants for Waldenström’s Macroglobulinaemia (WM) patients has been put on hold.

Last week, NHS England issued a statement following the recent High Court decision that NHS England have the power to commission Pre Exposure Prophylaxis (PREP) for HIV prevention. This update states that as a result of this recent decision, NHS England will not be funding a number of treatments recommended by their Clinical Priorities Advisory Group (CPAG), “to ensure that sufficient funding remains available for PrEP”. The NHS England announcement can be viewed in full here.

The treatments that will now not be funded are those the CPAG prioritised as level three and four, which includes stem cell transplants for Waldenström’s Macroglobulinaemia (WM), a rare type of non-Hodgkin lymphoma. More information on the recent CPAG prioritisation is available here.

The concerned charities have issued a joint statement, which reads as follows:

Sir

We are dismayed with the announcement last week that following 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

Myeloma UK

Waldenström’s Macroglobulinaemia UK

 

For further information, please contact advocacy@leukaemiacare.org.uk