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Ralph Member in Phase 3

| Joined: | Wed Dec 8th, 2004 |
| Location: | Sydney, Australia |
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Posted: Sat Oct 22nd, 2005 00:11 |
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Hi Grace,
Im just sending again,again,again another email to Minister Abbott to assist in leaning on Phizer to at least make it available to doctors on prescription until it goes through the PBS.It would have to be cheaper at least rather than bringing it in from Germany where we have to confront mail and exchange rate costs.
I have oredered my first batch of Votum through Germany and Im still waiting for the bill which Im not looking forward to.
All you Aussies out there please when you can write to Minister Abbott and Pfizer and keep the pressure up.
Ralph
____________________ 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 Member in Phase 3

| Joined: | Fri Feb 18th, 2005 |
| Location: | Sydney, Australia |
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Posted: Wed Oct 26th, 2005 04:47 |
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Is there any news on the timing for Votum / Benica to be available in Austrailia, and even on the NHS ??
With thanks... Chris
____________________ 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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Aussie Barb Member in Phase 3

| Joined: | Thu Jul 22nd, 2004 |
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| Posts: | 19553 |
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Posted: Wed Oct 26th, 2005 04:49 |
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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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Moxie Guests visiting Phase 1/2/3

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Posted: Mon Nov 7th, 2005 23:22 |
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I spoke with someone in the "Medical Affairs" Department at Pfizer in Sydney yesterday. They stated that Benicar has been approved by the TGA for sale in Australia. The catch is that Pfizer has not decided whether they will market and sell it here. So the person we all need to write to get Benicar available is
Mr Albert Lee
Director of Marketing
Pfizer
38-42 Wharf Road
WEST RYDE NSW 2114
If you wish to speak to someone about this the phone number is 1800 675 229
Also if you are in a health fund here you may now be able to get some rebate on Benicar as it is now approved by the TGA.
We are so close now and hopefully a concerted effort will make Benicar affordable for many more people who need this drug.
____________________ 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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anne p inactive member

| Joined: | Tue Jul 20th, 2004 |
| Location: | NSW, Australia |
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Posted: Wed Nov 9th, 2005 02:18 |
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Moxie
I have sent a letter to Pfizer to encourage the marketing and sale of Benicar in Aussie. I also at the same time taught myself to type and print off a business letter and envelope. (I wasted 6 envelopes getting it right! but now I know how to do it.)
Anne
____________________ Sx24years CFS/Lyme/ spinalstenosis abx long term Labs 25D,22-1,25D,23.46(unreliable)MP 7/01/05 PH.1.24/01/05,PH2.5/03/05 stopped MP Sept20 resumed phase1 Jan4/06/ somac40mgday Neurontin 600mg 3xday duatrol3xday imigran50mgprn panadeineforte prn
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Sydney Chris Member in Phase 3

| Joined: | Fri Feb 18th, 2005 |
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Posted: Wed Nov 9th, 2005 04:14 |
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Am currently waiting on advice from a couple of friends who are well placed in NSW health.. and a former CEO of a major Australian drug company.. will hopefully have something substantial to advise as far as more concentrated lobbying and market pressure in the next couple of days... Chris
____________________ 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 Member in Phase 3

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Posted: Wed Nov 9th, 2005 22:59 |
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For those with access to a fax, the number for Mr Lee is 02 9850 3146.
My industry contact has confimed that lobbying by the patient group is a very powerful mechanism, although I also have assurances that further representations will be made to the NSW Health Minister re the sale of Benicar... Chris
____________________ 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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Grace Member in Phase 3
| Joined: | Tue Sep 14th, 2004 |
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Posted: Thu Nov 10th, 2005 21:13 |
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Olmetec is still at the PBAC [pharmaceutical benefits advisory committee],who processes the pbs approval.What we don't want is a restriction on the amount of olmetec for patiences through the pbs.
Of course pfizer wants us to hassle government so they can hold out for more money.
Of course pbs does not want to pay more money when there are other ARBs already available.
tga http://www.tga.gov.au/docs/html/adec/adec
pbac
http://www.health.gov.au/internet/wcms/publishing.nsf/Content/health-pbs-general-outcomes_full.htm
this process for pbs takes 3 meeting/stages.it appears that olmetec should be in the 'yellow book' ie pbs approved in 4/05.
Grace
____________________ 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 Member in Phase 3

| Joined: | Wed Dec 8th, 2004 |
| Location: | Sydney, Australia |
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Posted: Wed Nov 16th, 2005 06:02 |
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Hi All,
I have just recieved a email from Pfizer Australia ( Albert Lees ) office.They have said that whilst Olmetec has been approved for marketing in Australia because of Government cuts to the PBS they will NOT be introducing Olmetec into the Aussie market.I have asked the sender if I can reprint her email on our Board and I await her reply.
Aussie mates all I can say is that Im very Dissapointed and devastated.
regards,
Ralph
____________________ 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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Grace Member in Phase 3
| Joined: | Tue Sep 14th, 2004 |
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Posted: Wed Nov 16th, 2005 06:47 |
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Ralph,
I think this is pfizer playing games with PBS and using you.Pfizer can always put it on the private prescribtion, they won't because pbs means more money for them.Please understand this is normal business games playing with pbs.Trust me they do want to sell throught the pbs.
Us cracking up is what they want ie It helps them to hold out for better offer from pbs
I think you will find they have not withdrawn from the pbs process ,just playing games
Just sit tight.
or ask them for real written evidence that they won't be selling olmetec
Grace
____________________ 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 Member in Phase 3

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Posted: Wed Nov 16th, 2005 07:02 |
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Grace,
Im not familiar with the process you are talking about.I am hoping to copy on this board the email sent to me stating what I said previously.Yes the email states that the Government cut backs to the PBS and that we already have other similar ARB's is why they have taken this decision.She did acknowledge she was aware of the Marshall Protocol and that Olmetec was used for the treatment of Sarcoidosis
She also went on to say that Olmetec is also available in Asia i.e Singapore or Hong Kong.
Ralph
____________________ 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 Member in Phase 3

| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
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Posted: Fri Nov 18th, 2005 06:22 |
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| record of price from Colin: Have just changed from Atacand to Votum. Better in almost every respect. Cost of Votum. 4 x 98( 40mg)was Aus$663.
____________________ Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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pdejager Moderator

| Joined: | Fri Jun 3rd, 2005 |
| Location: | Sydney, Australia |
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Posted: Fri Nov 18th, 2005 10:22 |
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Just received my 2nd order of Votum from Munich. Total cost by priority mail (had to sign for it) for 3 x 98 (40mg)was $AUD508. Inspected by Customs and resealed, took just over a week to arrive.
____________________ MCS/CFS (1990)1,25-D/25-D 01Jul05: 38/28. 25-D 27Oct05: 16, 21Aug06: 8. Benicar started 27Aug05. Mino started 12Sep05. Started Phase 2 01Nov05. Started Phase 3 25Jul06. Supplements Se, Zn,Ca, Mg, probiotic, Vit C, Vit E
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robyno Member in Phase 3

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Posted: Tue Nov 22nd, 2005 23:37 |
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I just spoke to Mr Lee at Pfizer and added my pleas to those he has already received from everybody here. I tried to explain why other ARBs do not do the job and urged him to contact Trevor for more information. I laid it on pretty thick about how disadvantaged people with chronic illnesses are in Australia by not having ready access to Benicar, but I hung up feeling disappointed. He didn't exactly sound hopeful.
All we can do is to keep pushing.
Regards, Robyn
____________________ Mum of Matt 15 yrs 45 kg, Rickettsia+Lyme sympt,~90% recovered; Noirs Aug05, avoid light&D, Beni 13Sep05 20mg Q6H; in Ph 3 now & has his life back!!
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Ralph Member in Phase 3

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Posted: Thu Nov 24th, 2005 06:12 |
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Robyno,
I have today recieved an email from Mr Lees office indicating that a formal response for me to place on this board would be provided soon.I emailed back letting them know the decision is unfair and wrong and they should reconsider.
Judging from the response you got today we are in for a battle royal.They also said they would source a place in Asia to buy the Olmetec and would advise.
I will be protesting to the polies again.Lets all keep up the pressure.
Ralph
____________________ 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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Moxie Guests visiting Phase 1/2/3

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Posted: Thu Nov 24th, 2005 07:01 |
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Grace
I am with you on this one.....Pfizer will really only market Olmesartan when it goes onto PBS. That means they can whack the government for subsidy money and make more profits!! I believe we will get the drug in Australia but for people on MP we won't get it on PBS as we are using it "off label". This means we are not using it for blood pressue reasons. But I am sure it will be substantially cheaper than the cost of importing it from Germany and our private health funds will pay on it. So, now it is a battle between Pfizer and the Government. Stay tuned......
Moxie
____________________ 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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Sydney Chris Member in Phase 3

| Joined: | Fri Feb 18th, 2005 |
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Posted: Thu Nov 24th, 2005 08:05 |
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Moxie,
What you say is correct.. shame.. but drugs are a business, run for commercial not compassionate grounds. They are used to the pressure... but like all political battles, persistence, volume and finding an angle or point of leverage will win the day.
There is another way Benciar could be prescribed 'on label', post the successful trials of MP, which then allows it to be used for the treatment of what ever conditions were included in the trial. The last I heard, (about a month ago) Dr M is commencing controlled trials at the moment, meaning it will be a number of months down the track...
All the best... Chris
____________________ 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: Thu Dec 1st, 2005 07:45 |
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Yes Chris,
I tried to follow up on this route and asked for links to papers on CFS and MP but had no reply. So that would leave sarc patients to do the pushing on Benicar. When they apply for a Category B ruling from TGA, if they quote the papers published on Benicar and Sarcoidosis, it might be a go.
Anyway, if Pfizer were able to give us somewhere to buy in Asia, I am sure that will ease our burdens somewhat.
I have had contact today with Australian Unity Health Fund (was Grand United) and found that they will pay out on Benicar. They will actually pay 80% of the cost which is something like $376.00. But they only pay $500 per year on pharmaceutical costs all up so that won't leave much for the rest of the year if you are also claiming for Zithromax and Minocycline.
Round and round we go!
Moxie
____________________ 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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Aussie Barb Member in Phase 3

| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
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Posted: Thu Dec 1st, 2005 08:47 |
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ElizaH wrote:
My Votum was delivered to the door (signature required ) last Thursday just short of 6.5 days after ordering from Germany. It arrived as 3 boxes of Votum 40mg tablets, each box containing 7 foils of 14 tablets (98 tabs) in a 19.5 x 15 x 9 cm cardboard box together with an information slip (in German), a receipt which looks like a cash register docket and a plastic bag of air to reduce movement of the contents.
It had been inspected by customs.
The cost was Euro 360.40 which translated on the day debited to my account as Aus$491.86 plus a 2.5% bank exchange fee of $12.29 = total Aus$504.05 for 77.5 days supply @ qid dosage.
____________________ Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Ralph Member in Phase 3

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Posted: Fri Dec 2nd, 2005 23:49 |
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Moxie,
Like you have successfully got HCF to pay $150 on my first shipment of Votum 3 boxes which cost me about $504.They have indicated they will pay upto $500 per annum which is better than nothing.They have already paid max $200 per annum for purchase of Bolle's.As the new year approaches these benefits will reapply.
ALL THE BEST
Ralph
____________________ 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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