I have had a reply from Vicky Ford MEP

I wrote to her:

From Alltrials:

"Today the new head of pharmaceutical company Lilly UK Jean-Michel Cosséry said that patients don't want companies like his to spend their money sharing "old data." These "old data" are, of course, the results on which all treatments in current use are based! Perhaps he is hoping that AllTrials can be headed off into a siding, like all previous attempts to establish transparency.

A committee of MEPs will soon vote on proposals that would increase transparency of clinical trials. However, there are 350 lobbyists for the pharmaceutical industry at the European Parliament. MEPs are hearing Cosséry's arguments against transparency (and others) every day. We have until 29th May to make sure they hear our arguments.

The trust of patients who have volunteered for clinical trials is betrayed when findings generated by their participation are locked away.

Incomplete information means doctors could make bad treatment decisions and miss opportunities for good medicine.

Researchers don't know what was found in previous trials, or even that some trials happened, so trials are repeated unnecessarily."

Big Pharma is making big money. One example is that half the population is on Statins because of them. If you read up on the subject you will see what I mean. They are making billions and they appear to have "carte blanche" on the information they give out about trials on medication.

Please do your best to help.

She wrote back today:

I am not working directly on the Clinical Trials Directive. However, I have contacted the Conservative health spokesman Marina Yannakoudakis MEP who is following this Directive on behalf of the European Conservatives and Reformists Group. Conservative MEPs believe that patient safety is the highest priority and that transparency is therefore extremely important.

On the issue of data collection, data must be accurate and readily available. As such, Ms. Yannakoudakis will be supporting the inclusion of an amendment calling for the publication of an extended clinical study summary.

Ms. Yannakoudakis has said that she would be happy to receive further comments and suggestions as we move through the legislative process, and if there is anything else you would like to bring to her attention please do not hesitate to get in touch: marina.yannakoudakis@europarl.europa.eu

Many thanks,

Vicky Ford MEP

As far as I can see we should be writing to: marina.yannakoudakis@europarl.europa.eu

so more letters please ladies!

ellarose

2 Replies

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  • Hi Ellarose,

    thank you for this - not sure I have the skills to take this on, but very well done you for getting this noticed.

    Best wishes

    Jenni x

  • I think I was a bit out of my depth as well! That was why I quoted "Alltrials". The Statin stuff I was pretty sure of. I just wanted to get a letter out.

    I also should not have asked for letters from just "ladies" ...got carried away with all the females I suppose :)

    ellarose

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