Survey reveals critical gaps in support for rare cancer patients
Findings show cancer experiences vary widely, with many respondents reporting they did not receive the support they needed. People with rare and less common cancers consistently reported higher levels of unmet need than those with common cancers, including access to information (35%), connection with others with similar experiences (37%), and not being referred to social services (28%) and financial support services (32%).
Mental health emerged as the most significant unmet support need across the survey. Nearly half (49%) of respondents with a rare or less common cancer said their mental health could have been better supported, compared with one-third (34%) of people with common cancers.
The survey also highlights the serious financial impact of cancer. One in five respondents (21%) reported spending more than $10,000 on out-of-pocket cancer-related costs. Financial strain was a serious finding for people with all cancer types but what was particularly stark was how heightened it was for those with rare and less common cancers, with 58% saying their household financial situation had worsened as a result of cancer, compared with 42% of those with common cancers.
