HonCode

Go Back   HER2 Support Group Forums > her2group
Register Gallery FAQ Members List Calendar Today's Posts

Reply
 
Thread Tools Display Modes
Old 09-26-2007, 10:00 AM   #1
Lani
Senior Member
 
Join Date: Mar 2006
Posts: 4,778
I could editorialize...but I won't even bother!

Political decisions harming cancer treatment in Europe; time to stand up and be counted, say oncologists [European Cancer Organization]
Barcelona, Spain: Recent political decisions have had serious consequences for European oncology, said Professor John Smyth at ECCO 14, the European Cancer Conference, today (Monday 24 September 24). Professor Smyth, President of the Federation of European Cancer Societies (FECS) said that the new European CanCer Organisation (ECCO) would take an active role in engaging with policymakers to ensure that future legislation did not have a similarly negative impact.
Professor Smyth cited the Clinical Trials Directive and the recent Directive on Physical Agents (Electromagnetic Fields) as two examples of legislation that had had a major negative impact on oncology in Europe. "In the first, the academic oncology community woke up too late and found that the administrative and financial burden of running clinical trials had increased to the extent that many simply gave up," he said. "Now the Directive on Electromagnetic Fields looks as though it may stop all MRI scanning in Europe. We simply cannot continue to bury our heads in the sand on these issues, which affect doctors and patients alike."
Forthcoming topics of concern were the problems of international collaboration on stem cell research where European countries had widely differing legislation, and the whole area of the escalating cost of cancer treatment. "The successful development of many new anti-cancer drugs in recent years is challenging every health economic programme in Europe," said Professor Smyth. "It is imperative to find ways to improve the cost effectiveness of cancer treatment in general, and particularly the use of drugs. Improving the cost effective use of medicines is a major priority for industry, politicians and the public at large.
"Due to these new and improved treatments, screening, and earlier and better diagnosis, cancer patients are living longer and better lives. But how will the huge financial burden on society that this implies be met? ECCO will be asking governments and the European Commission to consider these issues as a matter or urgency."
ECCO will bring together major players in cancer research, treatment, and care in order to create awareness of patients' wishes and needs, encourage progressive thinking in cancer policy, education, and training, and continue to promote European cancer research and its application through the organisation of multi-disciplinary meetings and conferences, he said.
"The difference between the new ECCO and the old FECS will be that the new organisation has decided to take a far more active role in engaging with policymakers to promote the interests of both cancer patients, those who care for them; and those without whose research there would be no advances in treatment and care," he said. "For too long oncologists have sat back and said that getting involved in politics is not their business, and recent events have shown us that this is an attitude which is no longer sustainable.
" The last two years had given ample opportunity for reflection, said Professor Smyth. "Not only did we consult our members, but we also carried out an audit of many players in oncology, patient groups, media, and other stakeholders. They all told us the same thing - they wanted to see a democratic, representative, and visionary organisation tackle the problems that are currently besetting oncology science and practice. An organisation that would provide consistently dependable information on the state of oncology in Europe, and through that information provision would strive to improve the lot of everyone involved in cancer.
"It is a daunting task, but one that needs to be undertaken. And we will do our very best to carry it out."
European Directive will halt use of MRI scans; cancer diagnosis and treatment will suffer [European Cancer Organization]
Barcelona, Spain: Implementation of the Physical Agents (Electromagnetic Fields) Directive 2004/40/EC in all Member States could effectively halt the use of magnetic resonance imaging (MRI), an important tool in cancer diagnosis, treatment, and research, a scientist told a press conference at the European Cancer Conference (ECCO 14) today (Monday September 24). The Directive is due to be implemented across Europe by April 2008.
The Directive was drafted by DG Employment, with the aim of minimising workers' exposure to electromagnetic fields (EMF). Currently 8 million MRI patient examinations per year are carried out in Europe, said Professor Dag Rune Olsen, who works in experimental radiation therapy at the Norwegian Radiation Hospital, Oslo, Norway, and is chairman of the physics committee of the European Society for Therapeutic Radiology and Oncology (ESTRO). "But these are likely to have to stop, since the Directive sets limits to occupational radiation exposure which will mean that anyone working or moving near MRI equipment will breach them, thus making it possible for them to sue their employers. Even those maintaining or servicing the equipment may be affected," he said.
A British study into operator exposure to electromagnetic fields from MRI, published by the Heath and Safety Executive in June 2007, and carried out by Professor Stuart Crozier from Brisbane University, Australia, found that anyone standing within about 1 metre of an MRI scanner in use would breach the exposure limits laid down in the directive. The Commission has accepted this, and said that it will consider the HSE report together with the study it has commissioned itself, and which is due for publication in October 2007, when deciding whether and how to propose amendments to the directive or to extend the implementation period.
"But they may already be too late," said Professor Olsen. "Slovakia has already implemented the directive, on the grounds that it was based on the assumption that the limits which it sets would have no effect. This would appear to mean that it now illegal to carry out MRI scanning in the country."
The directive in its present form poses particular problems to those healthcare staff who care for patients such as children, the elderly, or those who have been anaesthetised, who need help and comfort during scans. It will also stop the use of MRI for interventional and surgical procedures, and will curtail cutting edge research.
A recent Eurobarometer (Europe-wide opinion poll) showed that most EU citizens felt that they were inadequately protected by authorities against the potential health risk posed by electromagnetic fields. More than two-thirds of people interviewed said that they were not satisfied with the information they received on EMF, and one-third said that they had not been informed at all.
However, in the medical field the use of MRI may lead to less exposure to radiation rather than more, said Professor Olsen. "MRI has to a certain extent contributed to a limit in the increase in the use of ionising radiation in medical imaging, for example, in CT scans. This is important with respect to radiation-related cancer mortality risks and is as such in line with requirements laid down in EURATOM Directive 97/43 regarding optimisation and justification of medical exposure to ionising radiation," he said. "If the public were informed of this I am sure that they would be as keen as I am to see that MRI is allowed to continue. The added value that MRI represents to medical diagnostics has been tremendous.
"Policy-making should be based on sound science, and to my knowledge there is no scientific evidence of long-term adverse health effects of exposure to static or fluctuating magnetic fields that are commonly found during MR scanning. Hasty decisions without scientific support will in this case have a severe impact on medical diagnostics and must thus be avoided. I hope that the Commission will allow a delay in implementation to enable it to examine this issue again and that the Directive could be amended to allow an EU-wide derogation for MRI," he concluded.
Lani is offline   Reply With Quote
Old 09-27-2007, 03:42 AM   #2
Christine MH-UK
Senior Member
 
Join Date: Sep 2005
Posts: 414
Time to write my MEP

Oh Lani, this is very bad. That's the problem with the European Union, they don't consult enough before they make legislation. I had read a few months ago through a specialised subscription publication I get at work that the Clinical Trials Directive was bad news, but I couldn't post it because of copyright rules. This doctor is not a lone voice.

Thank you for this. I will alert British breast cancer patients of this. Some of them have media contacts because of that herceptin campaign and some British papers will print any story in which the EU messes up.

Take care,

Christine
Christine MH-UK is offline   Reply With Quote
Old 09-27-2007, 07:26 PM   #3
fullofbeans
Senior Member
 
Join Date: Jan 2007
Location: UK
Posts: 617
Thank..

..you for bringing this up to our attention..this is ridiculous. I am pro European but man sometimes they come up with the most stupid directives..

Also just generally Lani thank you for posting interesting studies and keeping us informed (editorioalised or not), I for one really appreciate it.
__________________

35 y/o
June 06: BC stage I
Grade 3; ER/PR neg
Her-2+++; lumpectomies

Aug 06: Stage IV
liver mets: 6 tumours
July 06 to Jan 07: 2*FEC+6*Taxotere; 3*TACE; LITT
March 07- Sept 07: Vaccination trial (phase 2, peptide based) at the UW (Seattle).
Herceptin since 2006
NED til Oct 09
Recurrence Oct 2009: to internal mammary gland since October 2009 missed on Oct and March 2010 scan.. palpable nodes in May 2010 when I realised..
Nov 2011:7 mets to lungs progressing fast failed hercp/tykerb/xeloda combo..

superior vena cava blocked: stent but face remains puffy

April 2012: Teresa Trial, randomised to TDM1
Nov 2012 progressing on TDM1
Dec 2012 blockage of my airways by tumours, obliteration of these blocking tumours breathing better but hoping for more- at mo too many tumours to count in the lungs and nodes.

Dec 2012 Starting new trial S-222611 phase 1b dual egfr her2+ inhibitor.



'Under no circumstances should you lose hope..' Dalai Lama
fullofbeans is offline   Reply With Quote
Old 10-25-2007, 07:29 AM   #4
Christine MH-UK
Senior Member
 
Join Date: Sep 2005
Posts: 414
Good news

According to the Guardian, the EU has decided not to introduce the directive for at least four years while it reviews the scientific evidence (of course, they probably should have done this before they introduced the directive in the first place). Apparently there were quite a few groups that had pointed out the difficulties with the directive, but maybe all our letters helped tip the balance.

http://www.guardian.co.uk/science/20...esearch.health
Christine MH-UK is offline   Reply With Quote
Old 10-25-2007, 10:21 AM   #5
hutchibk
Senior Member
 
hutchibk's Avatar
 
Join Date: Oct 2005
Posts: 3,519
"The successful development of many new anti-cancer drugs in recent years is challenging every health economic programme in Europe," said Professor Smyth. "It is imperative to find ways to improve the cost effectiveness of cancer treatment in general, and particularly the use of drugs. Improving the cost effective use of medicines is a major priority for industry, politicians and the public at large....Due to these new and improved treatments, screening, and earlier and better diagnosis, cancer patients are living longer and better lives. But how will the huge financial burden on society that this implies be met?"

IMO, this is very important to monitor and consider as our country steadily marches toward government owned health care. Yikes.
__________________
Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
hutchibk is offline   Reply With Quote
Old 10-27-2007, 02:25 PM   #6
Christine MH-UK
Senior Member
 
Join Date: Sep 2005
Posts: 414
Actually

Government-owned healthcare in Europe is not that universally common. The UK is an exceptional case where the government pays for almost all of the care for everyone out of taxes and also provides almost all of it as well, but in the other systems government plays less of a role.

Although Professor Smyth only mentioned European programmes, health care costs are universally challenging, just look at the number of people in the US who can't afford coverage. When I was in the US last summer there seemed to be alot of concern that even people with coverage often didn't have enough coverage.

Ironically, one of the big barriers to sensible reform in the UK is that Britons look at the inadequacies of the US and freak out about any attempt to get the more market involvement in healthcare. So, in the US when they want to block reform they bring out the extreme example of Britain and in the UK they bring out the extreme example of the US and nothing changes that much, which is very convenient for the powerful interests who benefit from the way things are.
Christine MH-UK is offline   Reply With Quote
Old 10-27-2007, 03:11 PM   #7
Grace
Guest
 
Posts: n/a
"as our country steadily marches toward government owned health care." Hooray!
  Reply With Quote
Old 10-27-2007, 03:52 PM   #8
vickie h
Senior Member
 
vickie h's Avatar
 
Join Date: Jun 2006
Location: san luis obispo, ca
Posts: 1,150
Amen, Grace

I haven't been to this site for awhile, but now that I'm here I want to say AMEN, GRACE. Government healthcare, Yeah!!!!!
__________________
Love and Hugs, Vickie

Life's not about waiting for the storm to pass,
It's about learning to dance in the rain.


Feb 04 IBC IIIC/IV er-/pr- her2+++
3/04 TCH X4
7/ 04 MRM 9/04 Taxol/herceptin wkly 1 yr 33X rads
11/04 skin mets 33x rads,10/05 Avast/Herc. 11 mos.
8/ 06 PET mets lymphs, neck
9/ 06 Navelbine/herceptin
11/ 06 PET NED
2/ 07 skin mets, 4/07 Xeloda, 5/07 add Tykerb
2/ 08 Tykerb failed. Doxil /Herceptin 6 months
8/08 PET skin mets, 8/08 Abraxane/Avastin
11/ 08 PET prog., skin mets
1/09 PET/CT progress, 1/09 Ixempra, 2/09 add Xeloda and low dose Naltrexone
2/09 off Ixempra/Xeloda
3/09 navelbine/herc/cytoxin 4/09 PET shows regress.7/09 start Topotecan. Failed.
8/09 extensive mets rgt brst, back and torso. starting Pazopanib clinical trial.
vickie h is offline   Reply With Quote
Old 10-27-2007, 04:23 PM   #9
fullofbeans
Senior Member
 
Join Date: Jan 2007
Location: UK
Posts: 617
Dear Christine MH UK,

Unfortunately I have to disagree with your opinion of the NHS is the only Universical care of the sort in Europe, au contraire.


If you can name me a single western european country that does not cover cancer at 100% please let me know. But has it stand the facts are as follows;

"In the 1880s, most Germans became covered under the mandatory health care system championed by Bismarck. The National Health Service (NHS) in the United Kingdom was the world's first universal health care system provided by government. It was established in 1948. The most comprehensive today is in France, and the second most is in Italy. Other examples are Medicare in Australia, established in the 1970s, and by the same name Medicare in Canada, established between 1966 and 1984. Universal health care contrasts to the systems like health care in the United States or South Africa, though South Africa is one of the many countries attempting health care reform"

http://en.wikipedia.org/wiki/Universal_health_care

The fact that you were under the impression that only in the UK you have universal care is common and was true a long while back. This is unfortunately what it often misrepresentated in the some of the press. I suspect that it an intended message from (?) to justify their poor rate of success compared the other European countries.
<SCRIPT type=text/javascript> vbmenu_register("postmenu_139417", true); </SCRIPT>
__________________

35 y/o
June 06: BC stage I
Grade 3; ER/PR neg
Her-2+++; lumpectomies

Aug 06: Stage IV
liver mets: 6 tumours
July 06 to Jan 07: 2*FEC+6*Taxotere; 3*TACE; LITT
March 07- Sept 07: Vaccination trial (phase 2, peptide based) at the UW (Seattle).
Herceptin since 2006
NED til Oct 09
Recurrence Oct 2009: to internal mammary gland since October 2009 missed on Oct and March 2010 scan.. palpable nodes in May 2010 when I realised..
Nov 2011:7 mets to lungs progressing fast failed hercp/tykerb/xeloda combo..

superior vena cava blocked: stent but face remains puffy

April 2012: Teresa Trial, randomised to TDM1
Nov 2012 progressing on TDM1
Dec 2012 blockage of my airways by tumours, obliteration of these blocking tumours breathing better but hoping for more- at mo too many tumours to count in the lungs and nodes.

Dec 2012 Starting new trial S-222611 phase 1b dual egfr her2+ inhibitor.



'Under no circumstances should you lose hope..' Dalai Lama
fullofbeans is offline   Reply With Quote
Old 11-29-2007, 06:34 AM   #10
Christine MH-UK
Senior Member
 
Join Date: Sep 2005
Posts: 414
Universal Healthcare is NOT the same as government-owned

This is exactly what I am talking about! Universal care and government-owned care are not the same thing at all.

I have lived in Germany, so I know what I am talking about. It has universal coverage, but not government-owned coverage. The difficulty with the UK is that the government tries to do everything in medical care and nobody is willing to change because they all think (wrongly) that if it's not universal care it must be government-owned care.

You could have universal coverage with a much more minimal government role by requiring coverage and having the government provide healthcare vouchers to those who can't afford it. (This is off the top of my head, but I know that the state of Massachusetts is thinking about requiring people to get coverage and helping people who can't afford it otherwise).
Christine MH-UK is offline   Reply With Quote
Old 11-29-2007, 07:28 AM   #11
Grace
Guest
 
Posts: n/a
In addition to Masschusetts, the State of Maine also has a form of universal health care; premiums are based on ability to pay and recently Maine, which is one of the poorer states if measured by per capita income, was listed (#7) among the top ten states for health care. In fact, the New England states occupy half the positions in the top ten. One reason for Maine's rating was its very low number of uninsured people (9%). In some of our southern states, the number of uninsured is as high as 45%. And New York, my other home state, was 29 in the rankings, which is pathetic considering its wealth compared to Maine. The number everywhere should, of course, be zero but we're getting there, in Maine at least.

I agree, of the EU countries, England is near the bottom in quality of health care. France has an excellent system, as does Italy, and from what you write, I assume Germany does as well. And after reading posts from Ireland, it also seems to have good care While I was still fighting to get herceptin in New York State, herceptin had already been approved for early stage breast cancer in Italy. I was set to leave for Italy when my oncologist managed to get it approved for me in New York, mainly because I had just become eligible for Medicare, which is our form of universal health care. And I celebrate Medicare every day, as my care as been excellent and at very low cost.
  Reply With Quote
Old 11-29-2007, 09:15 AM   #12
Jean
Senior Member
 
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
Very Sad....Grace

when I read your post that you almsot had to go to Italy and leave the good old USA to get hercetpin. It is just unblieveable!

Jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
Jean is offline   Reply With Quote
Old 11-29-2007, 09:31 AM   #13
Grace
Guest
 
Posts: n/a
Thanks Jean. But in the end, I didn't have to leave, and I have had superior care here, better than I ever imagined, in fact. My oncologist has pushed through every medicine and test he thought necessary. It was touch and go until he got herceptin approved, but it's been go ever since. I just wish this could be true for all woman--and if any one had ever suggested I would celebrate turning 65, I would have denied it all the way. And that's just what I did, celebrate.
  Reply With Quote
Old 11-29-2007, 11:00 AM   #14
michka
Senior Member
 
michka's Avatar
 
Join Date: Feb 2007
Location: Paris, France
Posts: 858
Post

I live in France. Every women, rich or poor can get cancer care... Herceptine, Scans, IRMs.. and choose her doctors. In the private or public medical system. I just hope France has enough money left to keep this wonderful medical coverage.
Michka
__________________
08.2006 3 cm IDC Stage 2-3, HER2 3+ ER+90% PR 20%
FEC, Taxol+ Herceptin, Mastectomy, Radiation, Herceptin 1 year followed by Tykerb 1 year,Aromasin /Faslodex

12.2010 Mets to liver,Herceptin+Tykerb
03.2011 Liver resection ER+70% PR-
04.2011 Herceptin+Navelbine+750mg Tykerb
06.2011 Liver ned, Met to sternum. Added Zometa 09.2011 Cyberknife for sternum
11.2011 Pet clear. Stop Navelbine, continuing on Hercpetin+Tykerb+Aromasin
02.2012 Mets to lungs, nodes, liver
04.2012 TDM1, Ned in 07.2012
04.2015 Stop TDM1/Kadcyla, still Ned, liver problems
04.2016 Liver mets. Back on Kadcyla
08.2016 Kadcyla stopped working. mets to liver lungs bones
09.2016 Biopsy to liver. no more HER2, still ER+
09.2016 CMF Afinitor/Aromasin/ Xgeva.Met to eye muscle Cyberknife
01.2017 Gemzar/Carboplatin/ Ibrance/Faslodex then Taxotere
02.2017 30 micro mets to brain breathing getting worse and worse
04.2017 Liquid biopsy/CTC indicates HER2 again. Start Herceptin with Halaven
06.2017 all tumors shrunk 60% . more micro mets to brain (1mm mets) no symptoms
michka is offline   Reply With Quote
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump


All times are GMT -7. The time now is 07:26 AM.


Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2024, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007 - 2021
free webpage hit counter