TGN1214 clinical trial - two e-mails I wrote in 2006 to BBC (repost)

Wednesday, October 08, 2008

TGN1214 clinical trial - asking the media to do a good job

I've just found two e-mails I wrote to BBC in march 2006. It's about the TGenero drug trial that made 6 volunteers very sick. As i wrote in this post , by the time Philip Dawdy wrote an e-mail for two reporters of the Wall Street Journal and Stephany wrote a letter to Thomas Laughren, that I use to send e-mails even knowing that I will not have any answer.

This is one of them:

March 19, 2006
Dear Sirs,
About the Parelex, TGenero drug trial:
It was a bless in disguise that this horror happened in UK. Now you have hurt in your country young English citizens, a New Zealander and that is the reason why it is being reported. How many times horrors like this must have happened and has not been revealed.
This is the only way to catch attention to this horror and all the harm that Pharmaceutical Industry is causing in UK and around the world.
I do not use to watch CNN. But as the drug trial scandal is not being well reported by BBC, as I wrote before, I begun to follow the news on CNN. And I found out the reason why you cannot give too much information on this. I could not imagine that in UK the Pharmaceutical Industry use to advertise in search for volunteers in newspapers. Young people, students and unemployed are the target group to participate on these tests. Please, keep on doing your trials on english volunteers. Do not only look for poor people around the world.
It is in the Parliament review:
"A strong pound sterling makes matters worse for overseas companies. For those reasons, companies are increasingly placing their Phase II and III trials outside the UK, in low cost areas such as Eastern Europe, Russia and India." p. 18
The phase I must be in Africa and, as ethics is the last thing Pharmaceutical Industry holds dear, without people consent.
Perhaps the reason is:
"There is a shortage of appropriately trained clinical investigators in the UK, and this reflects lack of investment in clinical research and problems with clinical training pathways." p. 17
The review is very good and accurate. Unfortunately nobody pays attention.
I was astonished that CNN made a good approach on the matter interviewing doctors and even questioning ethics of Laboratories. BBC kept on repeating how luck that man was because he received placebo. From now on I will pay more attention on other sources. I was naive to believe that BBC is highly committed with good journalism. But I like Tim Sebastian even though "The Doha Debates" does not require all the skills he has. He was much better in HARDtalk.
Sincerely yours,

I've received a reply but unfortunately I have not saved it but this is my answer:

Dear Mr. Giannini,

What I was trying to stress is that BBC did not put the TeGenero drug trial in a bigger approach.
In HARDtalk, Steven Sackur once said to a GlaxoSmith representative that this Laboratory is being regarded as very greedy.
I do not believe that BBC is not aware that Pharmaceutical Industry cares a lot about money. If you did not realize it refer yourself to the Business News. You will perhaps see a laboratory representative trying to explain to their shareholders that the antibiotics they sell is being tested to be used in many diseases as possible.
You have already made on Panorama a first step about the SSRIs problems and even Charles Medawar, from Social Audit, who is very concerned about this problem, was allowed to say three sentences. He also helped a lot with the Parliament review on "The Influence of Pharmaceutical Industry" and his name is on page 12.
As BBC kept on repeating that the laboratories need volunteers I begun to follow the news on CNN. And I found out one of the reasons why you cannot give too much information. I could not imagine that in UK the Pharmaceutical Industry use to advertise in search for volunteers in newspapers. Poor people, students and unemployed are the target group to participate on these tests. I was astonished that CNN made a good approach on the matter interviewing doctors and even questioning ethics of Laboratories. BBC, need more volunteers as Lady Janet Darbyshire kept on repeating. And "Almost half of all trial delays result from difficulties in finding volunteers, and that can equate with a company losing millions of pounds in sales for a new drug. " The Guardian.
The Parelex drug trial was reported because it has caused cytokine storm. The girl who claimed that her boyfriend was like "the elephant man" did not appear two days on BBC. You also forgot to say that the two of the must serious injured are in coma, perhaps for months. You forgot to report some others aspects of this scandal.
If you read http://www.guardian.co.uk/medicine/story/0,,1734446,00.html you will find more about this horror and also the story of a man who got sick in a "male pill" drug trial.
How many people got permanent damages in such trials but cannot complain for they suffer of a iatrogenic disease that has no name and they were paid to get sick?
I understand that you will not fight the Pharmaceutical Industry. But it was clear this time that you are protecting a lot.
Not only you. The MHRA, FDA, AMA.... Bush father....politicians. After all "It is the third most profitable economic activity after tourism and finance in UK."
And you can also rely on MHRA:
"The MHRA is looking at whether the reaction was caused by a manufacturing problem, contamination, a dosing error or whether it was some "completely unanticipated side-effect of the drug in humans".
Of course this has nothing to do with the drug. It was a contamination or manufacturing problem.
That is exactly what we cannot take any longer. The manipulation and the shameful way of depicting something tragic as a normal mistake are unacceptable.
We need to hear at least: "Certainly, action will be needed to stop any repetition of the tragedy that unfolded at Northwick Park. The sight of loved ones, horribly disfigured, will be indelibly fixed in the minds of friends and relatives who gathered by victims' bedsides" The Guardian
What I have learned from it all is not to rely on BBC's impartiality. I do not like CNN, but I will have the two views from now on. Unfortunately TV5-Monde became an entertainment channel and I have stop seeing it. If it had not changed I'm sure that they would have done a debate on this issue for it is a tragedy that has to do with health and have many aspects to be discussed. But in their News they explained how the drug trials are made in France and it is more ethical.
And of course keep on reading read newspapers.
I enjoy "The Doha Debate". Tim Sebastian is a very gifted man. But I believe it does not require all the skills he has. He was much better in HARDtalk.
I would love to see him in a Hardtalk with Simon Gregor, spokesman for the MHRA, Dr Thomas Hanke, TeGenero's chief scientific officer and some key persons who profit with this mad medicine that makes people sick, risks are more usual than benefits and even death is caused by medicines.
It is about time at least to start debating this vital issues that has to do with health. Does it sounds too idealistic? Guess so.
Sincerely yours,