Genzyme asks: How are we doing?


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.


  1. I suspect that there are various regulations and laws in different countries, and even states/provinces, when it comes to interaction between patients and drug companies. Basically what I’m saying is that one size probably doesn’t fit all.

    I’ve had very little contact with Genzyme but when I have needed them, they were there for me. When I was struggling to have my treatment funded, I know they worked very hard. Of course they did have a vested interest in that, but still, I really appreciated it. There have only been a couple times when I’ve turned to my Genzyme rep and she came through. I believe the help would be there if I needed it.

    In Canada, we don’t have too many Pompe patients and it’s a large country so most of us never see each other. Genzyme does help to get us together periodically, which is awesome. I met a couple great Genzyme peeps in Ottawa last fall.

    I really like the idea of mentorship. It would be a bit if a challenge to put together a good system because there are so many privacy issues. Hey, I accept that I no longer have any, but a lot of people, especially new patients, don’t think that way. There are also liability issues when putting together a program like that. Just need to think through these things. We have to be careful because we aren’t medical pros and we will get asked medical questions. It might be better to set up a mentorship program that isn’t one-on-one, but rather small mentorship groups.

    A really good method of communication would be good. Message boards and email lists are the tried-and-true methods of communications. They’re being eclipsed by social systems like Facebook, but even that isn’t really good enough because a lot of the information isn’t persistent and it’s hard to find. I’ve been thinking that a social system specifically for Pompe Peeps might be the solution, but I’ve struggled to picture exactly what that would be. It would have to be done is such a way that it’s very searchable and easy for someone somewhat unfamiliar with the topic to find the info that they need. That’s a challenge.

    Okay, that’s my mind-dump. Thank you Monique for all that you do on behalf of all of us. Have fun in Boston!

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