Rosie Winterton

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DONCASTER MP WELCOMES CANCER NURSING INITIATIVE

Nurses at Doncaster Royal Infirmary are to be given access to an innovative self-learning programme to inform them about the treatment and management of myeloma, a debilitating blood cancer that affects up to 20,000 patients in the UK at any one time.

The Myeloma Nurses Learning Programme was launched this week by the International Myeloma Foundation (IMF) at a reception in the House of Commons. Rosie Winterton MP and Minister of State at the Department of Health spoke at the event and met with myeloma patients and medical professionals to learn more about the initiative.

“Myeloma is a highly debilitating cancer,” said Ms Winterton. “IMF (UK)’s initiative will enable nurses to provide the very best care and support for the myeloma patients in Doncaster. This programme will help improve patients’ quality of life and provide information and reassurance to their families.”

The new programme forms part of the IMF MAGIC (Myeloma Advocacy, Guideline and Information Community) nursing initiative which was set up in 2002. The new flexible self-learning programme will help educate nurses on the treatment and management of myeloma, enabling them to act as a specialised resource, providing information and support to patients and their families.

Attendees at the reception celebrated the achievements made in the field of health care provision for myeloma since 2002, looking at advances in treatments available to patients, including bortezomib (Velcade), which is used to treat those people who have relapsed after prior treatment.

Velcade has been seen to have a response in 59% of patients   and can raise average life expectancy of myeloma patients by 18 – 24 months, however, access to the treatment is still patchy and subject to postcode prescribing.

Notes to editors:

The International Myeloma Foundation (UK) reception, held at the House of Commons on 28th June, was hosted by Newport East MP Jessica Morden.

Registered as a charity in 1997, IMF (UK) is the only organisation in the UK dealing specifically with myeloma and its related disorders. IMF (UK) works with patients and carers, to help them cope with everything a diagnosis of myeloma brings, with health care professionals, to find better ways of treating and caring for myeloma patients, and scientists, to improve treatments and develop potential preventative and curative strategies.

MYELOMA
• Myeloma is a debilitating cancer affecting plasma cells in the bone marrow and accounts for 15% of all blood cancers.
• It accounts for 2% of all cancer cases , (15,000-20,000 people in the UK) and mainly affects the over 60’s  though there is increasing incidence in younger people  and around 10-15% of myeloma patients are now below the age of 45.
• Every year around 4,000 patients are diagnosed with myeloma of which 3,000 die from the disease – giving it one of the highest death rates of all cancers.
• Myeloma can cause anaemia and kidney damage with resultant high blood calcium levels, fatigue and susceptibility to infection and bone fractures. 
• Survival rates for myeloma patients have not improved in the last ten years with only 23% of patients living for more than five years.
• Myeloma is incurable, but treatable.  In recent years a number of new treatments have been developed which can slow or even halt the progression of the myeloma.  

ACCESS TO TREATMENTS
There has never been a more promising time for myeloma with new treatments being licensed and more and more, myeloma is becoming an illness that people can live with, rather than die from. Thalidomide, Velcade and Lenalidomide are all treatments that can halt and reverse the progress of myeloma, individually and in combination with standard treatments.

However, as with many other cancers, access to these vital new treatments in the UK is patchy and postcode prescribing is preventing many patients from accessing the drugs they need.

VELCADE
• This is a unique type of cancer treatment called a proteasome inhibitor which disrupts protein regulation and ultimately leads to programmed cancer cell death.
• The first treatment to be licensed for myeloma in over ten years.
• Proteasomes are responsible for the digestion of proteins, and affect the lifespan of regulatory proteins such as those that control the cell cycle.
• By inhibiting proteasomes in cancer cells, Velcade disrupts protein regulation, which ultimately can lead to programmed cell death (apoptosis) of the cancer cells.
• Currently it is prescribed for patients who have received at least one prior treatment and whose disease is worsening following their last treatment
• Velcade has been seen to reduce incidences of associated diseases such as osteoporosis and anaemia, leading to better quality of life for the patient

ACCESS TO VELCADE
• Velcade has been licensed in the UK for the treatment of relapsed and refractory multiple myeloma since April 2004.  In April 2005, Velcade received an extension to its license to allow use on its own for the treatment of progressive myeloma in patients who have received at least one prior therapy and who have undergone or who are unsuitable for bone marrow transplantation.
• There have been a number of individual instances of Velcade being refused to patients and clinicians across the UK.  Some of this resistance has been connected to the National Institute for Health and Clinical Excellence (NICE) which has not yet delivered an assessment of Velcade – it is currently going through the Single Technology Appraisal (STA) with guidance expected later in 2006. Until then, PCTs are using the lack of NICE guidance as an excuse not to prescribe the drug, even though clinicians should be free to make a clinical judgment to prescribe unappraised drugs such as Velcade.  Indeed, a DoH Circular 99/176 makes this clear to all PCTs.  On the 9th September 2005, the Department of Health made another statement to this regard stating:

"Newly licensed treatments should not be withheld just because guidance from NICE is unavailable. In these circumstances, we expect PCTs to take full account of the available evidence (which could include information from AWSMG and SMC) when reaching funding decisions.