In a couple of weeks, I will head back to Boston to participate in a Patient Advisory Meeting at Genzyme. They want to know how they are doing and how they can improve their patient relations among other things.
I have spoken with a few Pompe patients about their relationship with Genzyme and feelings range from, “They are unbelievably fantastic” to “eh, I’m not impressed.” What can Genzyme do to help you and your family as you navigate through the complicated world of Pompe?
I have heard from some patients that they do not feel connected to Genzyme, that their local representatives do not contact them enough. I have also heard that Genzyme is fantastic, that they cannot seem to do enough for patients and that you wouldn’t change a thing. But, there is always room for improvement and Genzyme is striving to be the best, and for that to happen they need to know what you think.
The one universal concern or request I have come across is the need for a better way for patients to find and communicate with one another. Additionally, my friend Karen had an excellent suggestion for developing a mentorship type program. Where those who are newly diagnosed are paired up with a more “experienced” patient. The common theme I see emerging here, is to help patients connect and not feel so alone.
Please let me know what you think. You can leave a comment anonymously, if you want. You can even ask me not to publish your comment as I know some of you are hesitant to “criticize” the company that provides your life saving treatment. But in order for them to be the best, they need to know what they are doing right and what they are not.
I fly to Boston on March 24, so please send me your ideas and comments before then.