Efficacy and Safety Maintained in Adult PNH Patients Receiving Pegcetacoplan for Up to 3 Years
Blood cancer is often described as the hidden cancer. Despitebeing the United Kingdom’s third biggest cancer killer andfifth most common cancer, blood cancer does not havethe same public profile as the other common cancers. Wewanted to interrogate what was causing this lack of aware-ness and what impact overcoming this hurdle could unlockfor the blood cancer community.Our survey of 2571 people in the blood cancer communityshowed that 91% of people affected by blood cancer believethe community would benefit if blood cancer were as well-known as other cancers, while 62% believe a lack of aware-ness is letting down the blood cancer community. Lack ofawareness surrounding blood cancer means that; 58% ofpeople with blood cancer agree that people are less likelyto leave their diagnosis understanding what is wrong withthem, with agreement ratings increasing to 77% for rarerblood cancers. 32% of those with blood cancer left theirdiagnosis without being told by a healthcare professional(HCP) that they have a type of blood cancer. 19% of peopleliving with blood cancer have never been told by a HCP thatthey have a type of blood cancer.At the point of diagnosis, 58% of people with blood cancerwere not aware of any support available. A blood cancerdiagnosis can cause a financial burden, yet only 25% wereaware of help with health costs (such as free prescriptions).15% knew they were entitled to larger financial benefits(such as PIP, ESA and Carers Allowance). Only 9% knewthat their blood cancer diagnosis made them eligible for one-off grants and loans to help with the extra costs cancer cancause. Only 12% knew they have legal protections under theEquality Act.47% of people with blood cancer do not feel part of any com-munity, despite 70% of people with blood cancer saying thisis important to them. For people from Asian, black, or mixedethnicity, finding a supportive community is even more likely to be important (75% vs 63%).