Velcade Finally Approved, But Disappointment For Myeloma Patients As NICE Move The Goalposts, UK

Main Category: Lymphoma / Leukemia / Myeloma
Also Included In: Regulatory Affairs / Drug Approvals;  Bones / Orthopaedics
Article Date: 31 Aug 2007 - 15:00 PDT

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In response to the recent final decision by NICE on the use of Velcade for cancer patients with myeloma, the bone marrow cancer, charities Myeloma UK, Cancerbackup and Leukaemia CARE issue the following response:

The long awaited decision on Velcade has resulted in a positive approval of the treatment, but many patients will now be ineligible to receive it after a change in the guidance since the preliminary ruling in June.

The initial decision (ACD) by NICE on Velcade stated that it was to be recommended for patients who have had at least one prior treatment, therefore all patients who had received one or more treatments would be eligible for Velcade. Today, though, the final decision (FAD) will deny access to the many patients who have relapsed more than once, as the guidance published limits its use to those who have had only one prior treatment.

The decision will still incorporate the Velcade Response Scheme which was offered by the manufacturer and was hailed as a landmark development back in June.

Reacting to the decision, Eric Low from Myeloma UK, said:

"We welcome the news that Velcade is finally to be made available on the NHS, but to have such a dramatic change to the guidance at this stage of the appraisal is very disappointing. The draft positive recommendation in June clearly expanded the guidance so that every myeloma patient who needed Velcade could access it, and people affected by myeloma accepted this in good faith. The recommendation in the FAD is a fundamental shift in their position and one that results in patients losing out. We are very concerned about the implications of this decision for patients for whom there are very limited or no other treatment options available. Myeloma UK will now also need to continue to work hard with patients to ensure they are able to get access to Velcade on an individual basis from PCTs at the point of need, no matter what stage of disease progression they are at."

Derryn Borley, Cancerbackup head of cancer support services, said:

"We are very disappointed by today's final decision, after what was a very promising initial decision for patients. The initial decision indicated that patients would be offered the opportunity to have Velcade whenever they relapsed, but this has now been withdrawn and people will only be able to access it on the NHS when they relapse for the first time. Denying patients access to this treatment at subsequent relapses will be hard for patients and their families, as the treatment can give valuable more months to people living with this incurable cancer."

Tony Gavin, from Leukaemia CARE added;

"This decision is long overdue and although Velcade is finally being made available on the NHS, it is still not benefiting many of the patients who really need it. The entire appraisal process has been an ordeal for patients and it is a great shame that many will still lose out despite the hard work and tireless campaigning to see equal access to those who need it, at a time when it is recommended to them by their consultant".

To read the guidance, visit http://www.nice.org.uk

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.

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.

-- The charity's website can be found at http://www.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

Leukaemia CARE

-- Leukaemia CARE was established in 1967, and was set up to offer care and support to anyone who's life had been affected by cancer of the blood. This care and support is extended to the patients immediate family and carers.

-- Leukaemia CARE receives the bulk of its funding from its supporters either in the form of direct fund raising or through legacies. We receive no money from the government, the lottery or the NHS. We get less than 8% of our income from the Pharmaceutical Industry.

http://www.nice.org.uk