A Fifth of People With MDS (Blood Cancer) Die Prematurely Because the NHS Won’t Fund New Life-extending Drugs

LONDON -

- More Than Half of Blood Cancer Experts (56 Percent) say Less Priority is Given to Rarer Cancers Compared to Other Common Cancers

The results of a new survey, launched today by the UK MDS Patient Support Group, shows that almost a fifth (18 percent) of patients suffering from myelodysplastic syndromes (MDS) - a type of blood cancer - could have lived for longer if they had been able to access treatments that are currently not approved by NICE for treatment on the NHS.[1]

Furthermore, the survey revealed that more than half (56 percent) of blood cancer experts surveyed believe that less priority is given to rarer cancers versus other common cancers. [1]

David Hall, Chairman of MDS UK Patient Support Group, comments: “These results are alarming and distressing. Denying any patient access to life-extending, blood cancer drugs is immoral and contradicts the very principles upon which the NHS was founded. These new treatments have been thoroughly tested and their efficacy demonstrated. It is ironic that the perceived constraints to availability in UK seem to be based exclusively on inadequate finance. Inevitably, post code inconsistency in supply reveals some patients with access to new drugs ahead of a NICE decision to license to the NHS. Other local health authorities choose to allow patients to die prematurely.”

The MDS UK Patient Support Group calls upon the Department of Health to re-address this inequality by making proven treatments available to all patients whose life span may otherwise be unnecessarily curtailed.

The survey also revealed:

- Majority of blood cancer experts (89 percent) surveyed have faced situations where they have been unable to provide treatments for their blood cancer patients that could have potentially extended their patients’ survival as these treatments were not readily available on the NHS or not yet approved by NICE. [1]

One in ten (12 percent) of blood cancer experts surveyed feel that it would be unwise to tell some of their patients of the new life-extending treatments that are not yet approved by NICE. The main reasons given were budgetary constraints and the risk of upsetting and distressing patients by informing them of treatments they cannot have. [1]

According to Ghulam Mufti, Professor of Haemato-oncology at King’s College Hospital, and Chairman of the UK MDS Forum, “These results highlight the concerning gaps in access to treatments that can prolong and improve the lives of patients living with MDS and other blood cancers. Despite significant advances in the treatment of MDS, the majority of patients cannot get access to and in some cases are not even informed about new life-extending drugs until they have been appraised and approved by NICE - a process that can take up to three years from when the drug is first licensed in the UK.”

Professor Mufti continued, “Patients with blood cancers require effective treatment to improve their chances of survival. The impact of waiting even a month for treatment can result in a life or death situation.”

Some blood cancer treatments featured in the survey, are not yet available on the NHS and are currently going through the NICE review process.

The aim of the survey titled, The Blood Cancer Treatment Access Survey, was to explore attitudes towards treatment options in haematological cancers and patient access to treatments. The survey data was collected via telephone interviews with 100 haematologists (90 from England and Wales and 10 from Scotland). The respondents surveyed were split between consultants and special registrars. The data was collected during 22nd June to 15th July 2009 by Eggington Research Associates Ltd.

Notes to Editors:

About MDS and other blood cancers

Blood cancers cover a number of very rare conditions including: myelodysplastic syndromes (MDS), multiple myeloma (MM), acute myeloid leukaemia (AML), chronic myelo-monocytic leukaemia (CMML), chronic myeloid leukaemia (CML), chronic lymphocytic leukaemia (CLL), follicular lymphoma (FL), Hodgkin’s lymphoma (HL) and non-Hodgkin’s lymphoma (NHL). The incidence and prevalence of blood and lymphatic cancers has increased. They are now the 5th most common type of cancer in the UK, with official figures suggesting that around 27,000 people are diagnosed each year with leukaemia, lymphoma and other blood cancers.[2] Myelodysplastic Syndromes (MDS), a rare disease, encompasses a group of life-threatening, incurable, malignant blood cancers affecting the bone marrow. According to current estimates just fewer than 2,000 new cases of MDS are diagnosed in the UK each year.[3]

About UK MDS Patient Support Group

MDS (Myelodysplastic Syndrome) describes malfunctions of the bone marrow in producing the correct quantity and quality of blood cells.

The MDS UK Patient Support Group:

* Provides continuous support to MDS patients and their carers.

* Advances public education in all aspects of MDS, through publications, the internet and regular patient meetings, conducted regionally throughout UK.

* Promotes and supports scientific research into the treatment and care of MDS patients.

* Encourages networking between patients.

For further information, please visit www.mdspatientsupport.org.uk

References

[1]. Eggington Research Associates Ltd. 2009, ‘The Blood Cancer Treatment Access Survey 2009′

[2]. Leukaemia CARE, 2009 Haematology Survey

[3] Haematological Malignancy Research Network. www.hmrn.org/Statistics/Quickstats/QuickStats.aspx. Last accessed 28/08/09.

Source: UK MDS Patient Support Group

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