Chris West
Posted by

Effective treatment for WM put at risk

Chris West
Posted by
11 Aug 2016

NHS England removes access to a series of rare disease treatments

Last week, you may have seen the news that the High Court has instructed NHS England to fund the treatment PrEP, which can help prevent HIV.  This decision isn’t final as NHS England are appealing the decision, as they believe the drug should be funded by local councils who have responsibility for public health and prevention.

NHS England have announced that until the funding issue around PrEP is confirmed, they will not be funding a series of treatments for rare diseases, including the treatment of stem cell transplantation for those with the rare blood cancer Waldenström’s Macroglobulinaemia (WM).  This treatment has been used successfully in the NHS for many years, so it is bad news for patients that access is now being temporarily withheld whilst the issue around funding for PrEP is dealt with – should NHS England lose their appeal, it may be that transplants for WM patients is not reinstated at all.

We are very disappointed that NHS England have taken this decision, and publicly set one population of patients against another.  We believe everyone should have access to the treatments they need, whether that’s stem cell transplants or PrEP.  NHS England needs to find a way to work with all stakeholders to make provision of all these treatments available to those in need, rather than effectively pit one disease area against another.

We have been in discussion with other blood cancer charities and agreed a joint statement as set out below.  We have also had a positive dialogue with HIV charities who are similarly disappointed that NHS England has acted in this way.  We will continue to work with other charities to make sure the patient voice is heard, and that the NHS provides blood cancer patients with the best treatments available.


Statement by the Blood Cancer Alliance

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.


Basil Skyers Myeloma Foundation


CLL Support Association

Leukaemia Care

Lymphoma Association


Myeloma UK

Waldenström’s Macroglobulinaemia UK

Make a donation

I would like to give...