Cancer patients claim they are being refused life-saving treatment over HIV drug

September 19, 2016 tunisante

Three patients say they’ve been told they can’t have potentially life saving stem cell transplants to treat rare form of blood cancer
Sandra Renshaw, 51, from Kent has just been told treatment is ‘on hold’
Follows ruling by High Court judge for health service to offer PrEP for HIV

Sophie Borland for the Daily Mail

Published:
18:44 EST, 18 September 2016

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Updated:
02:33 EST, 19 September 2016

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Three cancer patients claim they are being refused life-saving treatment because the NHS is saving up to pay for a controversial HIV drug.

All suffer from the rare blood cancer Waldenstrom’s macroglobulinemia, which affects 4,000 Britons and can only be cured by stem cell transplants.

They have each been told by doctors that the treatment has been suspended to ensure there is sufficient funding for the HIV drug.

It follows a controversial High Court ruling last month in which a judge urged the health service to offer PrEP, the HIV preventive drug, to 10,000 sexually active gay men.

Stressed: Sandra Renshaw with her sons Matt (17) Alex (14) and Daniel (13) at home in Hartley Kent

PrEP is taken once a day and stops the virus from taking hold of the body if it is passed on. But the cost of prescribing the pill will be up to £20million a year and as such, the NHS has had to suspend funds for treatment of several rare illnesses.

Not all of the cancer patients need treatment but if the disease is progressing quickly, the only option is a stem cell transplant which costs up to £26,000.

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One patient, Sandra Renshaw, 51, has just been told the treatment is ‘on hold.’ The mother-of-three, from Hartley, Kent, was told it wouldn’t be going ahead after returning from a holiday in France before an operation earlier this summer.

‘When I came back I was told the transplant was on hold,’ she said. ‘I haven’t asked how long I’ve got. I’m a head-in-the-sand kind of person, but no one would put themselves through this kind of stress voluntarily. It is very emotional and very difficult.’

Another patient, Harriet Scorer, 56, a single mother from Henley-on-Thames, Oxfordshire, said: ‘I was told point blank that because the NHS would probably have to fund PrEP, they could not now put me through stem cell treatment.’

The pharmacy consultant added: ‘I have taken time off work, which I can’t afford, and the only reason I have gone through this aggressive treatment, which has made me very sick, is to get me to transplant stage. I was told I would be fully fit by Christmas. Now I may just get two years’ survival.’

Ben Bradshaw, the former health minister, above, said if it is true ‘that is cruel and totally unacceptable behaviour’

One NHS consultant, who asked not to be named, has also been told he cannot have the treatment. The father-of-three said: ‘I have endured six months of chemotherapy. I have worked for the NHS for 19 years, I could work for it for another 19 years if I was able.

‘It saddens me that I can’t access the recommended treatment for me. The psychological impact on me and my wife has been considerable.’

The patients are being treated at University College London Hospital and a spokesman confirmed the stem cell treatment was no longer available.

Ben Bradshaw, the former health minister, said: ‘If it is true that patients are being told this, that is cruel and totally unacceptable behaviour on the part of those telling them and on the part of NHS England for trying to play one group of patients off against another.’

The patients are being treated at University College London Hospital and a spokesman confirmed the stem cell treatment was no longer available

Dr Michael Brady, medical director of the Terrence Higgins Trust, the HIV charity, said: ‘It is deeply misleading, and disrespectful to all patients, to position PrEP as a threat to the other treatments being considered by NHS England.’ He added that HIV treatments were due to be considered by the health service but ‘this was delayed due to NHS England’s series of U-turns and stalling tactics over its responsibility for HIV prevention treatment’.

An NHS England spokesman said: ‘There is a sensible, transparent process where doctors and patient representatives weigh the evidence about where best to invest the NHS’s growing budget.’