Our Policy Priorities
The Blood Cancer Alliance believes these key steps should be taken to improve blood cancer outcomes:
The inclusion of blood cancer within the Cancer Dashboard to ensure that blood cancers are grouped together as a single cohort alongside the other four most common cancers.
The adoption of improved mechanisms by which blood cancer patients’ particular challenges can be factored into treatment appraisal processes, alongside greater utilisation of real world clinical data.
A step-change in the psychological support made available to blood cancer patients both before, during and after treatment.
Our Policy Improvements
The Blood Cancer Alliance is calling for these policy improvements to help better cater for the complex needs of blood cancer patients:
Securing Access to the Best Treatment - Unlike solid tumour cancers, blood cancers are often not treatable using surgery or radiotherapy and many are relapsing and remitting and require multiple episodes of treatment. Access to the most effective new treatments is therefore especially vital for blood cancer patients. The BCA is calling for improvement to data quality, treatment appraisal processes and new treatment policy. The key challenges in delivering this objective include poor data quality and the current high cost of some blood cancer treatments. There is also the need for evolution of health technology assessment and reimbursement processes, and to address the slow pace of the NICE appraisal system, and corresponding slow uptake of newly approved treatments. Furthermore, policy development has for the most part been piecemeal, reactive and designed primarily to reduce pressure on the drugs budget.
Closing the Diagnosis Gap and Improving Provision in Health Policy and Care Design - Across blood cancers, there is considerable variation and complexity, and as a result this type of cancer is poorly understood relative to the ‘big four’ (breast, colorectal, lung and prostate). This lack of understanding has a direct impact on patients with blood cancers often not diagnosed quickly with symptoms often misunderstood or misdiagnosed, especially as the vast majority of GPs encounter blood cancer patients infrequently. These delays can have a major impact on a patient’s quality of life and overall outcome. The adoption of effective strategies for diagnosis and other challenges in blood cancer is undermined by the fact that the specific requirements of patients are often not recognised or catered for in the formulation of health policy. In England for example, action on blood cancer is not being incentivised due to the lack of a clear measurement and poor data quality with the Cancer Dashboard only covering the four most solid tumour cancers which equates to less than half of all cancer cases.
Ensuring blood cancer patients have all the care and support they need - People living with blood cancer have vastly varying experiences of diagnosis, treatment, care and recovery. This can lead to a strong sense of isolation and can take a strong psychological tool on patients. In the case of some blood cancers patients can be put on ‘watch and wait’ instead of receiving treatment following their diagnosis. In other cases, patients are told that treatment is available, but not curative, and that their cancer is a long-term condition. Given that patients can live with blood cancer for many years, the BCA believes personalised psychological support needs to be made available to blood cancer patients for their entire journey, rather than generic support as part of a post-treatment recovery package. The BCA continues to remain concerned about the lack of clarity and joined-up thinking on how this can be delivered, and how this will be tailored to meet blood cancer patients’ complex needs