CANCER

Bloodwise 21
STRATEGIC REPORT
A VOICE OF INFLUENCE FOR
PATIENTS
Through our public affairs work, we aim to engage
and influence decision makers, maximise the impact
of our research and patient services, provide solutions
and work with others.
ENGAGING AND INFLUENCING DECISION MAKERS
It’s been a very busy year for our public affairs team,
who’ve been proactively driving the needs of blood
cancer patients and responding in an agile way to
policy issues as they come up, often in collaboration
with other organisations across the devolved nations.
During the year we’ve had an increased presence
in places where the voice of our patients needs to
be heard. This has included attendance at party
conferences, all party groups, cancer networks and
at umbrella body events. We’ve also engaged with
our researchers and patients to adopt evidence-based
policy positions when it’s mattered.
There’s tangible impact for patients from this
important work, as the following examples show.
MAKING CRUCIAL DRUGS AVAILABLE
Earlier this year the Scottish Medicines Consortium
(SMC) decided that ruxolitinib wouldn’t be made
available to myelofibrosis patients in Scotland.
Myelofibrosis is a blood disorder caused by an
abnormality in cells that make platelets. As the
disease develops, tissue in the bone marrow scars
over and becomes useless. Blood cell production
is taken over by the liver and spleen, resulting in
low blood counts. Symptoms can vary but include
anaemia, persistent infections, headaches and skin
irritation. Ruxolitinib is the only treatment shown to
be able to lessen these debilitating symptoms, reduce
spleen size and improve quality of life for patients.
We provided the views of two clinical experts at the
SMC’s patient and clinical engagement meeting and
after hearing from clinicians and charities, the SMC
reversed their decision.
Bloodwise trading as Leukaemia & Lymphoma Research Company limited by guarantee 738089
Registered charity 216032 (England & Wales) SC037529 (Scotland)