Dr J C Pompe

Dr J C Pompe
Discoverer of Pompe disease

About this blog

What you can read here is the story of the development of enzyme replacement therapy (ERT), the first effective treatment for Pompe disease. It is an incredible story, rich with events, characters and science. Above all, it is the story of an international community of scientists, doctors, patients and companies, working together towards a common goal.

It is not a story that features in Geeta Anand's book, The Cure , or the film based on it, Extraordinary Measures despite the fact that they are ostensibly about the development of ERT for Pompe ( you can link straight to the relevant articles covering the events described in the book and film here, here and here).

This blog represents my small attempt to set the record straight and to give the story back to its rightful owners - the international Pompe community. It is written here in roughly chronological order i.e. you'll need to start at the bottom of the April 2009 archive page and work your way up.

It is also a personal account and, although I've tried to make it as objective as possible, there is an inevitable degree of subjectivity. For that reason I have included contributions from other members of the worldwide Pompe community and would be delighted to receive more. Feedback is also welcome.

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Sunday 17 January 2010

Why Genzyme are one of the world's greatest companies

I've been slightly harsh about Genzyme in my last few postings, so I'd like to re-dress the balance somewhat.

Sure, they had a run of 3 bad decisions - buying Novazyme, trying to prevent a patient meeting and putting John Crowley in charge of the Pompe project.  However, in the grand scheme of things, those were aberrations that should not detract from the big picture. And I'm in no position to be too critical since, as I've admitted, I was happy enough with two of those decisions at the time.

None of the above means that Genzyme is a bad company. They're not bankers, for goodness sakes. They're just not perfect, that's all.

The big picture is this. Genzyme is a company that does well by doing good. Their products add greatly to the sum total of human happiness and, in many cases, transform patients' lives for the better. They bring hope to people who had none. Sure, it's a business and if it didn't make a profit they wouldn't do it - and they can certainly show some corporate ruthlessness in the pursuit of that profit.

However, I've met many Genzyme employees over the years and two things have struck me about every single one of them. Firstly, they have all been impressive performers - the recruitment bar is clearly set high. Secondly, I always got the impression that it was more than just a job. They believed in what they were doing and were motivated by a genuine desire to help patients.  If a company has those fundamentals in place with their staff, it won't go far wrong.

Genzyme have also been generous in their provision of treatments to those parts of the world which cannot afford them, indicating a humanitarian streak. I'm not saying that they are corporate saints - but they are certainly on the side of the angels.

That's enough good things about Genzyme for now.  I may well be critical of them again - but I wanted to put that criticism into its proper context.

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