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