Rare cancer patients face heavier access burden in Europe, ASCO data show

By AI, Created 3:16 PM UTC, June 01, 2026, /AGP/ – Sciensus and Rare Patient Voice presented new survey data at ASCO 2026 showing that people with rare cancers in five European countries face longer travel times, more fragmented care and limited access to trials or early access programs. The findings point to a need for more decentralized treatment models and better navigation support.

Why it matters: - Rare cancer patients in Europe appear to face more logistical, financial and care-navigation hurdles than the broader cancer population. - The findings point to a gap between clinical care and treatment access, especially for patients who must travel to specialist centers or rely on fragmented pathways. - The poster suggests home delivery, integrated care navigation and hybrid treatment models could reduce burden for patients and caregivers.

What happened: - Sciensus and Rare Patient Voice presented data at the 2026 ASCO Annual Meeting. - The poster, Patient-Reported Barriers to Treatment Access and Home Delivery in Cancer Care Across Five European Countries, examined survey responses from 134 people affected by cancer across France, Germany, Italy, Spain and the UK. - The sample included a rare cancer subgroup of 16 respondents. - The analysis focused on treatment access, medication collection burden, home-delivery experience and lived experience.

The details: - Among all cancer respondents, 44% said they spent more than one hour collecting medication. - Fifty-seven percent either lacked access to home delivery or did not know it was available. - Ninety percent said home delivery would improve quality of life. - In the rare cancer subgroup, 62% spent more than one hour collecting medicines. - Thirty-one percent of rare cancer respondents spent more than two hours collecting medicines. - Nineteen percent spent more than four hours collecting medicines. - By comparison, 44% of the broader cancer cohort spent more than one hour collecting medicines, 17% spent more than two hours and 7% spent more than four hours. - Only 3 of 16 rare cancer respondents reported participation in an Early Access Programme or a clinical trial. - The study identified recurring qualitative themes, including travel to tertiary centers, difficulty accessing specialist expertise, financial strain, unclear care pathways, low awareness of EAPs or trials and the need for more psychological support for patients and families.

Between the lines: - The data suggest that rare cancer patients are more likely to experience treatment as a logistical burden, not just a medical one. - The low participation in Early Access Programmes and trials may reflect limited visibility, access barriers or both. - The emphasis on home delivery and navigation support signals a broader shift toward service design that accounts for patient time, travel and practical constraints. - Dr. Sherif Raouf, Clinical Director, Cancer at Sciensus, said fragmented access pathways can directly shape how patients experience treatment. - Mark Hawken, Managing Director, Cancer Services at Sciensus, said treatment delivery should be evaluated alongside clinical care itself. - Pam Cusick, senior vice president at Rare Patient Voice, said patient experience should be treated as essential insight in how future cancer services are designed and evaluated.

What’s next: - The poster concludes that decentralized and hybrid treatment models may help reduce the burden on rare cancer patients and caregivers. - The study also points to proactive EAP outreach, integrated care navigation and home-based delivery of treatment as possible ways to improve continuity of care. - The findings are likely to inform cancer stakeholders focused on equity, access and resource use.

The bottom line: - The ASCO data frame rare cancer access as a systems problem: the farther patients must travel and the more fragmented the pathway, the heavier the burden.