Fw: Update from ACTION AGAINST SILICONE GEL,UK

[Guest guest]

From: " ilena rose " <ilena@...>

Sent: Tuesday, August 07, 2001 10:17 AM

Subject: Update from ACTION AGAINST SILICONE GEL,UK

Dear Ilena-Please post.From Ros, AASG,UK

Thanks to Dr Zuckerman for explaining anomalies in research data. We

continue to refer to your epidemiology critiques.Have you made any headway,

, with attempts at setting up dialogue between Prof Silman/Prof

Sturrock & yourself?

Thanks to Dr Kolb for recent summary of research. Re the subject of

silicone as a candida inducing agent, howdoes this tie up with research

>from Dept of Otorlaryngology, St Hospital, Leeds, UK? This concerns

damage

to tracheo-oesophagal speaking valves from propensity of silastic surfaces

to induce candida. We referred to this & possible links with silicone

implant disease in one of our questions to the IRG at our IRG Meeting. In

reply, the member of the IRG who took up the question, played down this

possibility. However, this IRG member was the Plastic Surgeon

representative! No other IRG member took on the question.

Congratulations, Ilena, on winning your legal battle. THANKS for continuing

your great service.

& I are very encouaged by the dedicated work of Carol Levya,

Amaranth Productions.AASG,UK gave her other UK contacts & & I gave

camera interviews.We have every confidence in her serious commitment to

this problem.

Since last year, the three most significent events hav been :

1.THE IRG OPEN DAY MEETING IN LONDON,UK 2.THE UK HEALTH COMMITTEE INQUIRY

ENTITLED: 'INFORMATION BY THE GOVERNMENT RELATING TO THE SAFETY OF BREAST

IMPLANTS'. 3.THE INITIATIVES & REPORT FROM THE EUROPEAN PARLIAMENT ON THE

BREAST IMPLANT ISSUES.

1.IRG Open Day Meeting:

We submitted in advance a number of detailed questions to the IRG. We

conferred with experts, Keeling & Dr Zuckerman in composing some of

our questions. In advance also, we asked for and received in writing from

the Chair, Prof sturrock, an undertaking that there would be a

follow-up`process after the meeting from questions at the meeting. Several

questions were unanswered at the Meeting. I had compiled a dossier f

letters from Doctors who disagreed with the IG report. This comprised the

lettersin the Joural of Nutritional & Environmental Med & , in addition,

responses from: Dr Myhill,(GP specialising in allergic medicine),Dr

Phiip (specialist in micro-embolism),Professor Sloan(oral

medicine), Prof Jonathon Brostoff(allergic medicine),Dr

Bell(rheumatology, research scientist) & Professor Malcolm Hooper(emeritus

Professor of medicinal chemistry). We submitted the dossier along with some

attached questions. Most of this had been mislaid by the panel at the

meeting. I gave another copy.After the meeting, I conferred with fellow

casualties who had attended and drew up a feedback letter. prof. Sturrock

then reneged on his previous undertaking , saying hw could not get into

correspondence on the subject - this in spite of many supportive letters,

including a letter from my MP & my MEP, urging him to answer my queries. We

pressed on with our request and now Prof Sturrock is following up some of

the leters from the dossier and has promised to ask toxicologist colleagues

about the platinum effect.We welcome this move from the IRG but we are not

holding our breaths.The IRG now has two new Patient Representatives,one

from the Patients' Association & one from the Consumers' Association. I

have poken with both & sent in an account with AASG questions. The CA

Representative told me that CA had

asked that one of us be on the panel, butProf Sturrock tuned down this

suggestion!

2. The Health Committee Inquiry:

Campaigners had urged this over a period of two yrs, so it was an

encouraging achievement. & I gave written & oral evidence.

Ditto, Balen, Solicitor for silicone casualties. A number of other

casualties sent in written evidence.We were heartened by the

criticism of the MDA in the Health Committee's report.The Chair stated that

he would like to see these devicesbear a

health warning of the risks. Though the Health Committe has not the power

to ban silicone breast implants, it has made a number of reommendations

which will increase vigilance. We are at present pushing forward

suggestions for the revision of the BI Information booklet. AASG & other

groups have urged thatinformation be tied in with the Consent form (as in

New Zealand), though we are doubtful about success in these efforts. Copy

of the Health Committee Report, Session 2000-1 Fourth Report can be bought

from The Stationery Office Ltd PO Box 29, Norwich NR3 1GN,

e-mail<book.orders@...>

Eu Parliament:

Great efforts were made by petitioners & campaigners. A radical MEP

supporter is Frau Margo Kessler & we believe that initiatives in Germany

are growing. The Eu result pushes forward recommendations on the need for

further reserch and improved patient information. The only mandatory

diretive, though, pertains to better regulation of manufacturing standards.

The petition went through The Committee of Environment & the Womens'

Committee before the final report. Petitioners succeeded in having a

specialmeeting with Mr Liikanen, the Commissioner's office. Well done,

Cosima,Mar Lou, , Inge

ALL THREE OF THESE EVENTS KEEP¨THE ISSUE ON THE AGENDA & INCREAE THE NOTE

OF CAUTION UNFORTUNATELY NONE OF THEM HAS

BROUGHT ABOUT APROSPECT OF A BAN OR MORATORIUM OF SILICONE GEL IMPLANTS AT

THIS STAGE.

AASG, UK has worked very diligently over th past six/7 years, in

combination with our overseas colleagues, Keeling & other god

companions in the US.In Europe our ties ith Mar Lou Boots & Cosima Meyer

are invaluable. Our ability to contribute to the EU initiatives has

depended on these two - Cosima's great co-ordinaing abilities from net to

us has been mightily impressive. We confer in the Uk with

on, SS, UK.

We have had a loyal circle of supporters her in the UK, who rally round

when asked. Some prefer to remain anonymous, but we dappreciate them.

We now feel`that our task may be to standback a little, just giving

occasional thrusts at official bodies. Our main target for continuing

questions here is probably the IRG, Colleagues overseas tell us that the UK

is influential. This is difficult to grapple with when we consider the set

stance of the MDA & , of course, the official inertia set by global

financial interests. So although we step back, we will keep`our fingers on

the buttons.

GREETINGS AND GOOD LUCK TO ALL FELLOW CASUALTIES, CAMPAIGNERS & RESEARCHERS.

>FROM ROS & BRENDA, AASG,UK