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 them 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, France, Spain or 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 health. 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 Peter Doshi, a key reader, had to use a letter-opener to get access.
All this left us looking at other options.
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.
Bill James also discovered Lulu.com. Never heard of it – me neither. But it seems that those who like independence know all about it. There are other sites who print and distribute that we are exploring.
There is now a Lulu link for Kindle and ePub on Samizdat and here
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. Geoff Dunbar of SmithKline suggested perhaps skipping that scale and not having patients complete it.
If you are in College doing social sciences, law, medicine or anything and have a seminar or other group that want as a group to free associate rather than write a College type essay, incorporating comments on any aspects of the book – perhaps under the heading of the punchline from Killing Eve which was something like For God’s sake Eve, there will always be a Twelve.
All reviews will be published on Samizdat. We already have 3 reviews. I am sure 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, an idea that came from Jim Gottstein who has audiobooked The Zyprexa Papers. For any of you who have insomnia, this will be the perfect non-pharmacological answer.
Any other ideas on how to spread the word would be great to get. Anyone else who like Mark comes up with a good idea we adopt to any extent will get a free signed copy of the book.
It would also be good to get photos like the ones Peter Doshi sent us of anything odd that happens to either an Amazon, Lulu or other mode of access to the book.
If there is anyone able to buy significant quantities of the book to distribute to others, let us know because we can get up to 100 author’s copies to you although the post might be very slow.
As mentioned several times, the goal is to get the contents of the book out – complete with its typos that are my fault – rather than to make money.
Paul John Scott’s Malcharist will be published by Samizdat within weeks. Malcharist – what’s that?
Jon Jureidini and Leemon McHenry’s The Illusion of Evidence Based Medicine is scheduled for July 1st.
Copyright © Data Based Medicine Americas Ltd.
D Is there a Japanese translation please?
“Your kokoro is your soul, and the notion that it can catch cold (kokoro no kaze) was introduced to Japan by the pharmaceutical industry” The New York Times Magazine
Editorial Note: By 2002 GlaxoSmithKline had done 3 studies in children who were depressed and described all three to FDA as negative. As an old post on Bob Fiddaman’s blog reproduced here outlines, several years later they undertook another study in children in Japan.
Study 329 in Japan
Friday, May 21, 2010
EMAIL TO GLAXOSMITHKLINE RE; PAXIL STUDY IN CHILDREN
‘ In other words, it is important to identify patients with the indications for aggressive drug therapy as completely as possible’
Did Antidepressants Depress Japan?
By Kathryn Schulz
Aug. 22, 2004
Over the past five years, according to the Japanese Bookstore Association, 177 books about depression have been published, compared with a mere 27 from 1990 to 1995. Earlier this month, the country’s most popular online bulletin board, Channel 2, carried 713 conversation threads about depression — more than music (582) or food (691) and almost as many as romance (716).
The next year, GlaxoSmithKline — maker of the antidepressant Paxil — followed Meiji into the market. Koji Nakagawa, GlaxoSmithKline’s product manager for Paxil, explained: ”When other pharmaceutical companies were giving up on developing antidepressants in Japan, we went ahead for a very simple reason: the successful marketing in the United States and Europe.”
Direct-to-consumer drug advertising is illegal in Japan, so the company relied on educational campaigns targeting mild depression. As Nakagawa put it: ”People didn’t know they were suffering from a disease. We felt it was important to reach out to them.” So the company formulated a tripartite message: ”Depression is a disease that anyone can get. It can be cured by medicine. Early detection is important.”
The psychiatrist Yutaka Ono advocates raising awareness about depression, but GlaxoSmithKline’s marketing made him uncomfortable: ”They ran a very intense campaign about mild depression where a beautiful young lady comes out all smiles and says, ‘I went to a doctor and now I’m happy.’ You know, depression is not that easy. And if it is that easy, it might not be depression.”
Behind everything they do is a special purpose: to help people do more, feel better and live longer. And at the heart of that are values and expectations that help define the firm’s culture—allowing the GSK team to deliver extraordinary things for their patients and consumers.
Children of the Cure could be the real winner in Japan, and do ‘extraordinary things’ …
Am sending copies to Womens’ Aid –