NICE Appeal Ruling On Velcade Signals Positive Step Forward, UK

Main Category: Lymphoma / Leukemia / Myeloma
Also Included In: Cancer / Oncology
Article Date: 29 Mar 2007 - 15:00 PDT

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The National Institute for Health and Clinical Excellence's (NICE) decision to review its own ruling denying patients NHS access to an important drug for the treatment of myeloma, a form of bone marrow cancer, has been hailed as a significant development by a coalition of cancer charities.

The move comes in response to a joint appeal lodged by the cancer charities Myeloma UK, Cancerbackup and Leukaemia CARE, who argued that NICE's initial rejection of Velcade was based mainly on the grounds of cost, rather than efficacy, and that this decision was therefore "perverse and unfair", particularly as the cost of the drug was just over the £30,000 threshold for NHS drugs.

The NICE Appeals Panel ruled that as Velcade is the first in a new class of treatment then, "if it [NICE] should decline to recommend bortezomib [Velcade] treatment for use on the NHS, [it] must explain fully its reasons for failing to recommend such treatment…that the Committee accepted would prolong, significantly, the life of patients with an incurable disease."

Myeloma patient Jacky Pickles, one of the 'Velcade 3', who have been campaigning for NICE approval of the drug, said: "The entire myeloma community has been campaigning for access to Velcade for three years. The announcement today has given us all hope that soon no patient will die of myeloma without first being given access to Velcade. It could keep us alive long enough for a cure to be found. We now wait with a little more confidence that this vital treatment will be made available to all who need it when NICE delivers its final decision. If they agree to let clinicians use Velcade on the NHS, it will be like the myeloma community winning the lottery. Without it we are sentenced to death."

Welcoming the news, Eric Low, Chief Executive of Myeloma UK said: "This is a promising step forward for myeloma patients. We are grateful to NICE for accepting the validity of the appeal and for having responded in a positive manner. We hope that further review of the evidence will mean that myeloma patients get access to what is unquestionably a clinically effective and important treatment. This is a complex issue that deserves due consideration. It is unfortunate, however, that it has taken such a long time to get to this stage - and longer still until the final outcome is known - during which time patients remain subject to disparate access to an effective drug. Myeloma UK will continue to campaign for an improvement in the way that new cancer drugs are made available in the UK with the aim of ensuring that patients get access to and receive optimum treatment."

Joanne Rule, Chief Executive of Cancerbackup added: "There is now hope that all myeloma patients may be able to access this treatment. Until this new guidance is issued primary care trusts need to be reminded that they are still free to prescribe Velcade and the government has just re-issued Health Service Circular 1999/176, which means that trusts do not need to wait for NICE guidance to give a licensed drug to patients."

Tony Gavin, Chief Executive of Leukaemia CARE said: "This is welcome news for the three charities involved in this appeal and indeed for NICE, because it shows that the appeal process does work. It will also bring fresh hope to those patients who have myeloma, and for the family friends and carers of those patients who can be just as badly affected by the diagnosis as the patient, but feel utterly unable to help. Leukaemia CARE, like Myeloma UK, will continue to campaign on behalf of all patients diagnosed with myeloma, and any of the other blood cancers, for optimum treatment."

Myeloma

-- Myeloma is a devastating form of cancer, which is currently incurable, but treatable

-- It is a cancer of the plasma cells, which are found in the bone marrow. Most symptoms are caused by build up of defective plasma cells in the marrow, these include: bone pain, bone fractures, fatigue, anaemia and an increased burden of infections

-- The incidence of myeloma is increasing faster than any other cancer in the Western world. It has increased by 30% over the past 30 years

-- It is more common than all but one form of leukaemia

-- Nearly 4,000 people in the UK are diagnosed with myeloma each year and there are 20,000 myeloma patients in the UK at any one time.

-- The life expectancy of a newly-diagnosed myeloma patient is 3-5 years

-- Eight people die from myeloma every day

-- Treatment in myeloma is aimed at halting the progress of disease and treating the symptoms of the disease to maintain and improve the patient's quality of life

-- The most common forms of treatment include chemotherapy, radiotherapy, steroids, stem cell transplants, thalidomide and new treatments such as Velcade

-- Originally considered an older person's disease, the incidence of myeloma is now increasing in the young, with 10-15% of patients now under the age of 55

Myeloma UK

-- Myeloma UK was established in 1997 and is the only organisation in the UK dealing exclusively with myeloma and its related disorders.

-- Myeloma UK informs and supports people affected by myeloma, and helps improve treatment and standards of care through education, awareness and research.
myeloma.org.uk

Cancerbackup

-- Cancerbackup is the only national charity that specialises in providing information on all types of cancer.

-- All Cancerbackup services are free to cancer patients, their relatives and friends.

-- Cancerbackup Freephone Information Service: 0808 800 1234 (Mon-Fri, 9am-8pm). Cancerbackup Centres can be found in St Bartholomew's Hospital, Charing Cross Hospital, the London Clinic, The Christie Hospital, Ipswich Hospital, Nottingham University Hospitals, Coventry's University Hospital and Jersey. The charity's website can be found at cancerbackup.org.uk

-- Cancerbackup, as a charity, receives 54% of its funding from individuals, 11% from charitable trusts, 5% from grants, 14% from companies, 2% from investments and 14% from its trading company. Pharmaceutical companies contributed 9% of the total 2005/06 income.

-- In April 2006 Cancerbackup changed its name from CancerBACUP, so that the charity's name better represents the service the charity provides: information, understanding and support to anyone affected by cancer.

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