I described 2002 as the John Crowley era. In fact, it was the only time that John was directly involved in the Pompe project. As far as I can judge, he did a competent job and left a more patient-centred approach that continues at Genzyme to this day. That is his real professional achievement, I think, and it's not a bad legacy to leave. It's one he should be proud of.
However, was John responsible for the development of a treatment for Pompe disease, as The Cure implies and Extraordinary Measures more-than-implies? No, absolutely not.
John Crowley is, I believe, a good man and a good father. He is one of the worldwide Pompe family. He has a prodigious talent. However, for me, The Cure is the story of a talent wasted. The story of Novazyme, in particular, is essentially the story of a gigantic displacement activity. It's what kept John busy while the rest of the world got on with developing a treatment for Pompe disease.
I can't help but wonder what might have been. What if John had been more of a team player and that amazing energy and talent had been used within the international Pompe community? What might have been achieved then? Looking through my notes in writing this blog, I saw that John Crowley was originally down to attend the IPA founding conference in 1999 but did not come. What if he had? What might we all have achieved then? What if...?
I'm glad - beyond glad in fact - that John's children were finally able to take part in a trial of ERT. As I've said before, my heart sings every time I hear of a child or adult I know of starting treatment. And I'm glad that he and his wife have had the courage to tell the story of what it is like to cope with seriously ill children. That makes The Cure a moving book at times and, by all accounts, Extraordinary Measures a moving film. It's a story that many parents coping with seriously ill children will identify with and one that deserves to be more widely known and understood. It's a great thing that they have helped raise awareness in this way. I just wish that they would tell the real story of the development of a treatment for Pompe disease too.
Pretty soon - already, in fact - new Pompe patients will simply accept that the treatment is there and not give much thought to how it came about. That's as it should be, I guess. However if The Cure and Extraordinary Measures fill the vacuum, then a great disservice will have been done to the researchers who really did help develop the treatment and to the international patient community who played a part in it. That's why The Cure is, ultimately, a disappointing book. It's a shame, because with a bit more competent research - and, perhaps, a bit more generosity of spirit - it could have been a great book. Another 'what if...?'
That's why it's important that the real story is written down, so that it is not forgotten and is there for those who do want to know. One day, that story will be told by the great book that it deserves - until then, this rather sloppily written blog will have to do. But I digress.*
*Proving my point about sloppy writing. See what I did there?