When Samizdat published Children of the Cure on Amazon, there was discomfort in some quarters. The discomfort was practical for some. Mark Carter from Auckland told us it would take 154 NZ dollars to buy two copies and have then posted to him – he had to go through Amazon.com as Amazon.com.au for some strange reason does not seem to do print versions of Children, unlike Amazon England and France and Spain and Japan who do.
Mark also introduced us to the idea of making Children available to libraries – apparently, he had been able to get most Healy books stocked in at least some New Zealand libraries.
Some people also had as many ideological issues with Amazon as we have with mainstream publishers who bill themselves as independent or progressive but who are in the business of self-censoring in matters of health above all. In this case, it was an Australian who first expressed what has since seemed a very common sentiment.
Then there has been the fact that Amazon charges outrageous postage prices to ship a book a few miles – from America to Canada for instance. Even within the US postal charges are crazy, making the appeal of Prime seem obvious – yet another factor that galls many.
And when print copies turn up to people in the States at least, in some cases the pages have been uncut, so that one key reader had to use a letter-opener to get access.
All this left us looking at other options in addition to Amazon with whom lots of people are perfectly happy.
We are pursuing library options and have registered with OverDrive who supply libraries – in the US and Canada at least. We don’t know about other countries and would love to find out – if you know any librarians, can you ask?
Registering with OverDrive or its equivalent in other countries gets us into the system so that if someone in Auckland or Hobart or Reno requests a copy of the book their requests can be met but it still probably requires local borrowers to request a book from their local library to make this happen.
We have also discovered Lulu.com and there are other sites who print and distribute. There is now a Lulu link for Kindle and ePub on Samizdat and here
Mark has bought the first print copy of the book through Lulu.com, close to quartering the price he would have otherwise paid going through Amazon.
A signed copy of the book will be winging its way to him just as soon as the author’s copies turn up – which look like taking close to a month to show.
It may be a good idea for us to link up to other sites to extend our reach. We would welcome any thoughts you have on sites.
We are also open to any ideas you have about promoting the book and getting it debated by as many people as possible. We need to make enough money to keep Samizdat going but we are not trying to make a profit.
We want riffs on the book. Riffs don’t necessarily tell readers what is in the book or argue with the contents – they add to it. This can be in the form of additional elements of the story – if you are anyone who worked in a major pharmaceutical company or regulatory agency and knows a little more about what happened in this specific case or others like it, let us know. If you think you may have been involved in Study 329 or a study like it, think about getting in touch. If you were an investigator on a company trial and have a story to tell, let us know.
For the most part, any story about trials like Study 329 in the 1990s will be about studies run from good centres, linked to universities, and overseen by good investigators. The experience of those involved will be of engaging with science and decent patient care and it is likely quite strange to find the study being portrayed as it is in Children and by extension, all other trials of the time – as Study 329 was the industry norm, not some aberration.
I was involved in 3 SmithKline Beecham studies during the 1990s most of which seemed run by decent people who were under considerable time-pressure. The time pressure element can explain a lot, but there were also stand-out moments such as the one at an investigator meeting (in Monte Carlo or close by) for a trial of paroxetine in OCD, which included a scale that took sexual dysfunction into account, where Geoff Dunbar of SmithKline suggested perhaps skipping that scale and not having patients complete it.
All reviews will be published on Samizdat. We already have 3 reviews. All reviewers to come will appreciate knowing that you were beaten to the punch by someone who had to buy his own copy, wait for Amazon to deliver it, and who is 97. A mind-dump on this reviewer would tell us a lot of what we need to know about the history of the period.
We hope to bring out an audiobook of Study 329 soon. For all of you who have insomnia, this will be the perfect non-pharmacological answer.
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