I was at a meeting this week with other CML Advocates from around the world to discuss the issues surrounding possible barriers that might affect access to a novel TKI therapy.
We also discussed the CMLAdnet Adherence to therapy survey
-see link 3 on our survey page- survey.euro.confirmit.com/wix5/p929997428.aspx
and the good news is that to date we have 1177 respondents from 60 countries- Italy is currently leading followed by Germany, the Netherlands, US, Israel, UK, France and Poland. The Czech Rep is doing very well given their small population size with 47+ respondents.
I am sure we can still add to the UK's current figure of just under 80. I know we have many members who read this forum from many other regions of the world with a large proportion from the USA, so with the population sizes of both USA and UK we can try and grow the figures up to and beyond the survey goal of 2000. The Survey will be open until end of December.
If any of you have still not yet taken the survey we urge you to do so. It does not take long to complete and is completely anonymised. Because this research is undertaken by patients for patients, the results will be shared with all CML Advocate Groups and we will share the results with you.
It will also allow an examination of the patterns of non adherence with different TKIs.
Both the Adagio and Hammersmith studies show that approximately 25-30% of CML patients are less than fully adherent. Less than 90% adherence is the main cause of suboptimal responses, and carries a much increased risk of losing a complete cytogenetic (CCyR) or major molecular response (MMR).
I hope this survey will encourage a more open discussion about why some of us find it so difficult to adhere to what we know of life saving therapies.
There is no doubt that this is a very complex issue and we need to find a better understand of the exact nature of the issues that cause some of us to 'forget' - whether intentionally or unintentionally- to fully adhere to therapy, and also why others manage to be fully adherent to their therapy.
Sandy