This week I met with two more of the folks from Genzyme, Steve and Helen who cover the Florida area. It is always a pleasure to meet or talk with someone from Genzyme. Not only are these the folks working to help improve the lives of Pompe patients and others with rare genetic diseases, they understand everything we have been through – the toll Pompe takes on one’s body and the long road to a diagnosis. Like meeting and talking with other Pompe families, the people at Genzyme really are part of that overall support system we have. They really make you feel like a person and not just a case number.
From the beginning, Genzyme has made receiving treatment easy on me. They do all the leg work – they work with the hospital, doctors, and the most challenging – the insurance company. My case worker, Shontae, has been more than incredible. She is fierce and doesn’t waste any time – I like that! When I needed insurance approval for my Lumizyme infusions, she called my insurance company again and again until all the proper paperwork was in place. I didn’t have to do a thing, except give her the contact information. When she found out my insurance company was billing me incorrectly for services at the Mayo Clinic, she jumped right on that too. Now, these are services that have nothing to do with Genzyme or Lumizyme, but she wanted to make sure that everything was correct. She took it upon herself to investigate my insurance billing, and sure enough they weren’t billing me correctly and she stayed on them until they corrected the situation.
Everyone who I have come in contact with from Genzyme has been wonderful. And when I talk to other Pompe families they have the same nice things to say about them. They haven’t lost sight of the fact that they are saving lives as well as improving the quality of life for patients. It is not just profits with them, it is people. Will they make money with the commercial sale of Lumizyme? Of course, that is how they stay in business and we want them to stay in business and we need them to stay in business. The way I see it, the success of drugs like Myozyme and Lumizyme will only allow them to further their research and maybe, just maybe there will be a cure for Pompe one day.
Forget all that political rhetoric about pharmaceutical companies being evil. If Genzyme is evil than hand me my horns and pitchfork now, because I’m TEAM GENZYME!