Dear fellow Iclusig patients,
With the latest news about FDA and Iclusig, we have decided to launch the "Iclusig Patient Group". This is a patient advocate group with the primary goal of ensuring that Iclusig will be available to not only us who currently depend on it, but all CML patients. Nobody knows when you may either develop a mutation or build resistance to your existing TKI, and Iclusig needs to be made available to every CML patient as a potential treatment option.
Everyone here knows the risks that have been identified ever since the approval of the drug, but our position is that with an updated label and proper risk mitigation plan, there is a critical need where Iclusig is the best option and must be returned to the market as quickly as possible. Our first action is reaching out to various media outlets as well as the FDA. We need your ideas, input and voices to help ensure that we do our part to ensure that every treatment option is made available to CML patients. This is open to all Iclusig patients globally, since CML knows no borders and the availability is a world wide issue.
I'm reminded lately the Amnesty International slogan "it's better to light a candle, than to curse the darkness". Now is the time for all of us to ensure that the Iclusig patient's voice is heard and considered in these important decisions that need to be made.
More information will follow, but if you're interested in becoming involved, please contact us at IclusigPatientGroup@live.com.
In advance, thanks for being part of the solution!
Beth, Karen and Hans