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Grace
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| Joined: | Tue Sep 14th, 2004 |
| Location: | Australia |
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Posted: Sat Dec 3rd, 2005 00:16 |
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Moxie and Ralph,
How did you get HCF and Australian Unity Health Fund to cover you.I have tried my fund medibank private with No success.
thanks
Grace
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CFS, oct04 Ds=26/48, 4/07=7/24 MP PHI 2/05, PhII 6/05, PhIII 6/06, beni Q6H, Noirs rarely inside no nature light low watt, outside 40%10%, Hat, all covered, no gloves, paracetamol
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Ralph
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| Location: | Sydney, Australia |
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Posted: Sat Dec 3rd, 2005 01:28 |
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Grace,
In my submission to HCF I wrote to them explaining my condition and seeking assistance for by way of subsidising the purchase of Olmetec.I pointed out that this drug known as Benicar in the USA was FDA approved and the Aussie name brand was Olmetec which has been approved by the TGA.I attached the Govt Gazette for this approval.I also attached a letter from my specialist who explained in brief how we sarcies have a dysregulated Vit D metabolism which causes abnormally high levels of 1,25 dihydroxyvitamin D and the need to provide an anti-inflammatory blockade by way of Votum.I sucked up to them thanking them for already assisting me in payment of $200 for purchase of Bolle's.
Grace it worked and I am greatful as any assistance as we all know is helpful.I think you need to point out to these people at Medibank private that other funds are assisting in the purchase of these drugs for these conditions.Of course we all know that under our tax system that expenses over I think its $1,500 we get a further 25% rebate for each dollar spent.It all adds up to savings.
Finally I did promise that a formal letter by Phizer was iminent about them not marketing Olmetec, and a possible Asian market to purchase this drug instead of Germany.However,I am still awiting that reply.I will email them again today.
all the best,
Ralph
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Lungsarc1/3/05fatigue,bod/ache,irr/heartbt/ no meds|getting/sun,Bolle's only, BeniCom 2/4/06 q6h Start Ph 3 12-2-07. Jan 07 25D 10.8,Oct-25D 8 1,25-23Dec07 25D-16.8 1,25-81 22 Jan 09 25D-24 1,25-45,Jan10 25D-17 1,25-25 No Antibiotics from 3-2-10
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Sydney Chris
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Posted: Sat Dec 3rd, 2005 07:43 |
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Nice one Ralph..
Are you able to post the Aust Govt gazette notice so I can have a go with NRMA health as well..?
With thanks.. Chris
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Post viral syndrome IgG deficiency 125D74 IgG shots Ph1Mar05 Ph2Nov05 ModPh2Jan06 r/t KFTs Ph3Aug07 NoIRs lite exp r/t commute 25D<7.2(Jan07) 25D14.4(Mar08)
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Sydney Chris
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Posted: Sun Dec 4th, 2005 21:00 |
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For those interested in copy the TGA gazette can be found here..
http://www.tga.gov.au/docs/html/adec/adec0241.htm
Chris
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Post viral syndrome IgG deficiency 125D74 IgG shots Ph1Mar05 Ph2Nov05 ModPh2Jan06 r/t KFTs Ph3Aug07 NoIRs lite exp r/t commute 25D<7.2(Jan07) 25D14.4(Mar08)
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Moxie
Guests visiting Phase 1/2/3
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Posted: Mon Dec 5th, 2005 01:41 |
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Grace
I am not with Australian Unity (yet). My health fund Credicare will not pay on Votum. I phoned around and Australian Unity stated over the phone, that they pay 80% of private scripts and would pay on this drug. I have considered swapping over to them but the trick is they only pay $500 per year on pharmaceutical and Credicare pays $600. I can use up $600 per year with the cost of Z, Minocycline and pain meds so I am not all that much better off!
All this shopping around is a pain!! I am disappointed that my health fund now does not pay out as I have been with them for about 13 years. They did consider it but they turned me down.
Good luck. Am waiting to find out about Asian access to Benicar. Hopefully that comes good for us.
Moxie
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CFS 25 years - FMS. Benicar 3 daily - Ph 2 16/5/05 - Ph 3 10/5/06 Metformin 500mg 1/2 bd. Vit D 45nmol/L (18ng/ml) 1,25 D 92pmol/L (38.3pg/ml)
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ElizaH
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Posted: Tue Dec 13th, 2005 03:38 |
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In a post of 19/11/05 I mentioned I had mildly encouraging news about Olmesartan medomoxil in Australia. But needed to find some earlier notes. I eventually found the notes right where I thought I had put them. I think there could be a rogue invisibility cloak on the loose here.
The following is an account of my inquiries re our ARB.
My niece told me of the MP mid February 05. It made sense to me and I got on to trying to get myself onto it. At that stage I didn’t have my own internet access but thought I’d check out if the medications were available here. In March I got the kids to google Benicar for me and. armed with the printout I approached my chemist to see if it was available here.. He said ‘no - but Telmisartan (Micardis) is the same thing and gave me a printout from Mims. Manifestly it is not the same thing. It has a different molecular weight, a different composition and a different structure for starters. Was Telmisartan one of the ARBs Trevor trialed in his research? If so, in what way was it inferior to Beincar? The answer to this may be of use in lobbying for olemsartan to be made available here.
In the budget speech of 10/5/05 the Treasurer mentioned there were a number of new drugs in the pipeline so on 11/5/05 I contacted the Health Department here in Canberra to see if Benicar was one of them and was put through to Therapeutic Goods Administration - they only deal with the drugs once they are released. I then contacted ‘David’ in Tony Abbott’s office and stated my case. He couldn’t give me an answer then but rang back on 13/5/05 to say there had been no application for it to be marketed in Australia but that on a case by case basis it could be made available under the special access scheme etc etc [we now know that is not a possibility any more as it has since been approved here].
David also suggested I contact the manufacturer, Pfizer. I did that on their 1800 number and spoke to an Elaine (Crake - ?spelling) who gave me a good hearing but told me they had no plans to list it at that time (apparently they need tests to see if anything else does the job as well before they will proceed - I gathered these hadn‘t happened) but they may look at about mid 2006. She also said they’d had quite a number of enquiries about it . She seemed to take note when I mentioned the extra stress caused to the people who needed it by having to import it from overseas so I noted that may be a useful tool for further lobbying.
I eventually found my MP doctor in mid September and had to wait a further two months for the initial consultation. I saw him on and got my script on 15/11/05.
Feeling heavily stressed by the hassle involved in placing my order (I speak fluent antuqie Macintosh but PC is still alien) I rang Pfizer and asked for Mr Albert Lee (Marketing Manager). I was put through but he was out of the office so I left a message. He rang back about 1.5 hours later and I found him quite approachable. I put my point about the hassle associated with importing the drug for people already sick and stressed, said we really needed this drug and gave him the MP web address and suggested he contact Trevor. I also pointed out the worry of the increased cost for importation (postage plus bank exchange fee), the worry of whether it would arrive on time, if at all and now whether the borders would be closed in the event of a bird flu pandemic and we wouldn’t be able to get it at all. He seemed to take all this on board.
His initial reaction had been that there were quite a few ARBs already in Australia and in looking at its release they had decided there was no need for it here.
I then pointed out that the other ARBs were not suitable for our purpose and that it is required in greater quantities than for BP control. As people here are willing to import it and these numbers will grow as the MP becomes more widely accepted there is a market for it here (albeit small at present). It would be nice if it could also be on the PBS but that just having it here would be a significant help.
I agreed that on the economic side it would probably not pay but he didn’t outright reject the notion that marketing it here could be a gesture for public good rather than for profit.
He said they’d had letters on the subject but from the sound of it I suspect I had made some points he had not been aware of before. He said he would have to talk to others before any decision was taken. When I said he had my phone number for further contact he agreed and when I suggested he let me know of the outcome of the discussions he didn’t reject the idea.
On Friday 9/12/05 I tried to contact him again but he was out of the office and I left a message again.
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I’ve had a call back at 5.45 pm 12/12/05) from a woman, whose name I missed, but who was another option on Albert Lee’s message machine. She is on the medical side of things.
Pfizer call it Olmetec and are not the actual manufacturers. They are actively looking at making it accessible here and when they come to a conclusion will make a post on the MP website. She was not able to give me any time frame for this but they obviously have taken it on board that it is wanted/needed here and appear to be seeing what they can do to make it more accessible.
We also had a bit of a discussion about PBS listing. That is handled by the PB Authority which is another arm of the Commonwealth Health Department (like the TGA). Under the current testing requirements for PBS listing it is most unlikely it would gain listing which would still leave MP treatment as the preserve of those with sufficient funding - pity. Even so local availability would be a great step forward and the battle for recognition can still be fought at a later date.
That seems to be about as far as I can take it. But as I said initially it is mildly encouraging. I don’t know how much of this - if any - is of use to anyone but it shows we are not being ignored.
Best wishes,
ElizaH
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Fatigue/nausea/skin late98 Uveitis+Glaucoma, dx Sarc dx 3/99, breathing probs 5/05: NOIRS 3/05: oxygen 24/7 5/06: 15Mar05 1,25D=80.76, 25D=13.2: Votum 40mg q6h 24/11/05 Phase1 12/05-4/06 Modif Ph 2 13/4/06
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Ralph
Member in Phase 3
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Posted: Wed Dec 21st, 2005 23:41 |
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Hi All,
I have just recieved the letter from Pfizer stating why they won't market Olmetec in Australia.Its very dissapointing to say the least.I have saved the letter as a attachment.I have permission to publish this letter on this message board from the person I have been liasing with being linda.cockinis@pfizer.com Marketing Team Leader Pfizer Australia ( Hypertension )You all may want to contact her and state your anger at this decision.I have complained to Tony Abbotts office again and I suppose there sick of me.
Linda is still sourcing a place in Asia for us to buy the Olmetec from.She will contact me when she has that info.
regards,
Ralph
Attachment: Copy of Scanned Photo-1.jpeg (Downloaded 329 times)
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Lungsarc1/3/05fatigue,bod/ache,irr/heartbt/ no meds|getting/sun,Bolle's only, BeniCom 2/4/06 q6h Start Ph 3 12-2-07. Jan 07 25D 10.8,Oct-25D 8 1,25-23Dec07 25D-16.8 1,25-81 22 Jan 09 25D-24 1,25-45,Jan10 25D-17 1,25-25 No Antibiotics from 3-2-10
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DianeW
Member in Phase 3
| Joined: | Mon Oct 17th, 2005 |
| Location: | Perth, Australia |
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Posted: Thu Dec 22nd, 2005 00:15 |
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| HI, I don't seem able to access this letter from Pfizer re Benicar in Australia, is my system not compatible? DianeW
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Sarcoidosis hypothryroid 125D52 Ph1 May06 Ph2 Aug06 Ph3 Apr07 25D 4.8 Dec07 / 6.8 Mar09 /
8.4 Sept 09 thyroxine paracetamol paradex Valium NoIRs cover up
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Moxie
Guests visiting Phase 1/2/3
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Posted: Tue Jan 3rd, 2006 09:42 |
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Ralph
I am unable to access the letter - do I need to change some settings for this??
Thanks
Moxie
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CFS 25 years - FMS. Benicar 3 daily - Ph 2 16/5/05 - Ph 3 10/5/06 Metformin 500mg 1/2 bd. Vit D 45nmol/L (18ng/ml) 1,25 D 92pmol/L (38.3pg/ml)
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flis
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Posted: Tue Jan 3rd, 2006 13:06 |
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| I dont think it has been attached properly.
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Ralph
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Posted: Tue Jan 3rd, 2006 21:37 |
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Hey Guys,
Sorry your having problems opening the Pfizer letter.Im no computer buff if you are having problems please send me a private message with your email address and I will be happy to forward you the letter in a different format.It appears to have worked with others to date.
regards,
Ralph
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Lungsarc1/3/05fatigue,bod/ache,irr/heartbt/ no meds|getting/sun,Bolle's only, BeniCom 2/4/06 q6h Start Ph 3 12-2-07. Jan 07 25D 10.8,Oct-25D 8 1,25-23Dec07 25D-16.8 1,25-81 22 Jan 09 25D-24 1,25-45,Jan10 25D-17 1,25-25 No Antibiotics from 3-2-10
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Aussie Barb
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Posted: Tue Jan 3rd, 2006 21:43 |
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If someone is able to make it more easily accessible or to post it straight to the Board, please do so..
Thank you, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Grace
Member in Phase 3
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Posted: Thu Jan 12th, 2006 01:20 |
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Hi fellow Australians,
Now that we have Dr.Marshall latest research paper I have been writing letters to Pfizer and health minister.
PBAC/PBS said ,that there was a meeting between them and pfizer in November and the 'book' will be out in April. Pfizer said that they have withdrawn late November early December [unconfirmed],from PBS process, and that they are controlled by overseas company[sankyo?],
I believe the position that Pfizer has taken is unacceptable ,that they have soul patent right to provide the drug ,yet have not made it available in any form ie private prescription and withdrawing from PBS process etc.I have inform Pfizer that the public health would be interested via the press about this treatment and how pfizer has the sole control of olmetec and yet have decided not to make it available here.When all over world it is,and the shame of the very country of Dr Marshall birth where it is not
Pfizer contact
Susan Parker email infomed.australia@pfizer.com
Grace
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CFS, oct04 Ds=26/48, 4/07=7/24 MP PHI 2/05, PhII 6/05, PhIII 6/06, beni Q6H, Noirs rarely inside no nature light low watt, outside 40%10%, Hat, all covered, no gloves, paracetamol
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DianeW
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Posted: Thu Jan 12th, 2006 07:36 |
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| Hi Grace, I tried to contact Susan at infomed.australia@pfizer.com but the email bounced back. Is this an email address? Regards Diane
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Sarcoidosis hypothryroid 125D52 Ph1 May06 Ph2 Aug06 Ph3 Apr07 25D 4.8 Dec07 / 6.8 Mar09 /
8.4 Sept 09 thyroxine paracetamol paradex Valium NoIRs cover up
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Grace
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Posted: Thu Jan 12th, 2006 21:33 |
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sorry Diane,
try medinfo.australia@pfizer.com
see how that goes
Pfizer ph 1800 675 229
Grace
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CFS, oct04 Ds=26/48, 4/07=7/24 MP PHI 2/05, PhII 6/05, PhIII 6/06, beni Q6H, Noirs rarely inside no nature light low watt, outside 40%10%, Hat, all covered, no gloves, paracetamol
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Moxie
Guests visiting Phase 1/2/3
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Posted: Tue Jan 17th, 2006 11:41 |
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With the release of this new paper from Trevor I am reapplying to the TGA for Olmesartan through their SAS (special access scheme) When I originally applied this was their reply
Dear Dr D
I am writing with regard to your application June 6th to supply olmesartan medomixal for the treatment of chronic fatigue syndrome suffered by your patient, JW (31.7.46). In order to further assess this application I request that you provide the following information:
1. Please provide evidence to support the efficacy and safety of olmesartan in the treatment of chronic fatigue syndrome.
2. Please indicate whether JW has any contraindications to the use of olmesartan.
3. Please indicate what other registered therapies have been used to treat JW's chronic fatigue syndrome, particularly with reference to the Australian College of Physicians 2002 Clinical Guidelines for the treatment of Chronic Fatigue Syndrome.
Yours sincerely
Dr Andrew Pengilley
Head, EU 3
I believe this new paper should answer question 1 and ten months on Olmesartan should answer question 2. I have plenty of information to answer question 3!!
Persistence and Determination is the name of the game!!
Judy
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CFS 25 years - FMS. Benicar 3 daily - Ph 2 16/5/05 - Ph 3 10/5/06 Metformin 500mg 1/2 bd. Vit D 45nmol/L (18ng/ml) 1,25 D 92pmol/L (38.3pg/ml)
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Grace
Member in Phase 3
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Posted: Sat Jan 21st, 2006 04:44 |
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all Aussies,
I have received a email from Susan Parker at Pfizer
I have not yet obtained permission to post her, but the content was:
1 Pfizer was no longer intending to market it here. Confirm they have withdrawn from PBS process
2 There are other ARBs
3. lack of clinical trial and invitro.
I have responded but have not heard from her yet.
I think we now have to put pressure on Pfizer to
1. Make olmetec available now on private prescription
2. To re-engage in the PBS process.
because the facts are at present
1. Pfizer in early December has withdrawn from the PBS approval process. After the first meeting of three.
2 They won't sell it here on a private prescription.
3. Because they have the sole patent,not one else can sell it here.
4 It has been TGA approve ,so you can't get it under the SAS scheme.
5. People have been forced to buy from overseas, they cannot get a medical rebate on their private medical insurance.
on drugs purchase from overseas
6. The cost ....... Many people want to go on MP [marshal protocol]
but can not afford it.
I have told Pfizer that I will go to the media . I have sent Liam an email liam@yourabc.net.au
He was the fellow who did abc radio interview with Trevor.
I think we all can apply pressure through
1 You contacting Pfizer about points above
2 Asking our medical profession people to contact them, stating that they have patients etc who want olmetec
3 Asking our chemist to contact them-not just the rep, but Pfizer themselves.
4. Get our family and friends to contact them
5. Getting the media to contact them
6. You contact your local,state and federal members and other politicians with the facts that Pfizer has taken, remembering that it is readily
available overseas.
7. Signed petitions at chemists and doctors
8. I believe there is anti competitive element-contact the ACCC
We all have to push for olmetec to be sold here.!!!!!!
Thanks
Grace
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CFS, oct04 Ds=26/48, 4/07=7/24 MP PHI 2/05, PhII 6/05, PhIII 6/06, beni Q6H, Noirs rarely inside no nature light low watt, outside 40%10%, Hat, all covered, no gloves, paracetamol
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Grace
Member in Phase 3
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Posted: Sat Jan 21st, 2006 23:41 |
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ALSO
Ask cfs support groups to contact pfizer
contact
Susan Parker
Head of Medical Affairs
Pfizer Global Pharmaceuticals
Pfizer Australia
Email: susan.parker@pfizer.com<mailto:susan.parker@pfizer.com>
Website: http://www.pfizer.com.au
Pfizer ph 1800 675 229
Pfizer Australia Pty Limited (ABN 50 008 422 348) has its registered office at 38-42 Wharf Road, West Ryde, NSW 2114.
We have come this far with a illness, to not let pharmaceutical company prevent us from getting well
Grace
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CFS, oct04 Ds=26/48, 4/07=7/24 MP PHI 2/05, PhII 6/05, PhIII 6/06, beni Q6H, Noirs rarely inside no nature light low watt, outside 40%10%, Hat, all covered, no gloves, paracetamol
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Moxie
Guests visiting Phase 1/2/3
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Posted: Tue Jan 24th, 2006 04:01 |
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The ongoing saga of Benicar in Australia (Olmetec)....
Contacted TGA today and asked about accessing Olmetec through SAS. Was told if the drug is not registered or not marketed in Australia, I can apply for SAS. Yippee (I thought).
Also emailed Susan Parker at Pfizer - just another begging letter really but did include link to Trevor's new paper.
Her email today states that the only indication in which Olmesartan has been proven to be safe and effective in humans is hypertension.
Says Dr M has proposed a theory which suggests ARBs may be helpful in inflammatory disease, with olmesartan, irbesartan and valsartan having similar effects. These results have been obtained invitro and the underlying theory and proposed treatment has yet to be confirmed in clinical trials in humans.
Until sufficient clinical data has been collected and safety and efficacy in humans demonstrated for olmesartan in sarcoidosis, Pfizer Australia cannot knowingly make the product available for this condition in Australia.
So approaching TGA for SAS will probably be unsuccessful, but I am always persistent!
But Susan Parker did include an Asian Pharmacy address!!
Pharmacist: Jillian Kam
Pharmacy Owner: Mr Lau Oil Kwok
REGAL DISPENSARY
29E, Wong Nei Chong Road, Happy Valley, Hong Kong
Phone: (852) 25735247, 2891 1873
Fax: (852) 2891 2027
Email: regaldisp@negativator.
Unfortunately this email is not working at present and Chinese new year is fast approaching!
Will keep you posted when I have more information of cost for olmetec. 
Moxie
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CFS 25 years - FMS. Benicar 3 daily - Ph 2 16/5/05 - Ph 3 10/5/06 Metformin 500mg 1/2 bd. Vit D 45nmol/L (18ng/ml) 1,25 D 92pmol/L (38.3pg/ml)
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DianeW
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Posted: Tue Jan 24th, 2006 04:33 |
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Grace, Moxie,
I also contacted Susan and received the same reply. I emailed the Hong Kong address on 20th Jan but received no reply. I sent a second email today 24th.
I also received two addresses in the U.K. but they will only deal with Pharmacies and my local Pharmacist said that they can't import drugs which are not registered in Aust. I have emailed TGA for clarification.
Pfizer seem to be digging their heels in about this, perhaps they are worried about repercussions from people using Benicar for purposes other than hypertension. I pointed out that they were denying people with hypertension the benefit of the latest drug which is available in many other countries and that any other use should be between the patient and their Physician. She didn't reply to this.
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Sarcoidosis hypothryroid 125D52 Ph1 May06 Ph2 Aug06 Ph3 Apr07 25D 4.8 Dec07 / 6.8 Mar09 /
8.4 Sept 09 thyroxine paracetamol paradex Valium NoIRs cover up
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