Why isn’t every patient with cancer offered a clinical trial? Why are my six little pills not available to every metastatic Her2 patient now? These are the questions and issues that have frustrated me for years, and why I have become a patient ‘advocate’ campaigning for greater access to trials for patients.
There are no easy answers to these questions, but here’s my view of what the main barriers are:
- Lack of a reliable, up to date UK trials database which clinicians and patients can use (I only got my space on this trial via word of mouth, oncologist to fellow oncologist)
- Patient misunderstanding of the benefits of clinical trials, especially with advanced disease. Over the years people have assumed they might get a placebo drug (that never happens with advanced disease trials), or that it’s a last resort (ironically if you leave it too late you probably won’t be ‘well enough’ to get on a trial)
- General lack of patient knowledge, not even knowing that a trial might be available to them
- Too many criteria are set by pharma companies that exclude people
- Oncologists who don’t have the time, the knowledge or the interest to investigate what trials might be suitable for their patients
- Lack of transparency around pharma led clinical trials, with results often not reported and successful drugs not progressing because of internal or external competition
Lesley Stephen, Patient Advocate and Make 2nd Counts Trustee
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