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6 years 8 months ago #1617

What a great service you are doing! I feel so lucky that a friend of mine knows and trust Greg Jefferys and Greg in turn knows and trusts you! I look forward to a consultation next week.

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6 years 8 months ago #1620

Hi JM

Welcome and you would know by now that our main function here is to support hepers world wide, to improve and provide affordable access to the masses. And the buyers club and GJ existance, provides political agitation by holding a mirror up to the broken processes and systems worldwide. Merci beaucoup mon amie. Em,


Geno 1b F2/3 snce early 80s. Treated in 2008_9 for 63 weeks on INF/Riba. Commence Sof/Dac on 6 October 2015 and completed 18 weeks of tx. UND at 4-6 weeks, UND at EOT, SVR 2, SVR 6 and SVR 12 on 6 May 2016.
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6 years 8 months ago #1652

I just read Greg's blog entry of 24th October and it has brought again to my mind what has been nagging me greatly for some time - ie. the question of how to get UK doctors on board with generics just as is happening now in Australia. My personal ambitions to help with this are small but so far unachieved. It seems to me that in Australia it took just one person to 'infect' one hospital with the idea of using generics. That is how the idea has been spread. So I would like to infect my local NHS hospital with this idea, but so far I have not been successful. Maybe I am being too optimistic but I think that some of the objections I have met with are due to lack of information rather than downright rejection. eg.
-
When I asked for a script to take to India my doc said it would be no good to me because he is not licensed in India.
-
He was very freaked out about the possibility of my obtaining fake drugs. I think he was genuinely concerned for my safety.
-
He did agree to give me medical supervision if I went against his advice and obtained generics.

It has to be appreciated that I don't get much face time with my doc, or any of the support staff. I don't want to rock the boat and maybe lose the possibility of medical help from them. I think they are mostly well meaning people under the cosh of higher ups and Big Pharma, and though they feel sorry for me having hepC, I find myself feeling sorry for them having to preside over the financial disaster of the pricing policies of Big Pharma and the resulting invidious rationing of the drugs.

So my challenge as I see it is to get the information to them without putting their backs up, in the hope that even some of the ideas of Doc Freeman might catch hold. My doc does not know but needs to know that:
- His UK private script is OK for most suppliers
- The drug supplies are being obtained from trusted sources and then tested.
- There are buyers clubs, they are very organised and they are succeeding in protecting us.
- With his resources he could easily establish a testing facility himself for the use of the buyers of generics.
- Everything that is being done is legal in Australia and the UK. No patents are being violated.

They have a notice board at the hospital clinic but I'd need permission to post a notice. I'd have to write a notice first that would be likely to get permission. Right now the mere mention of 'generic' receives a shudder. You guys in OZ have the most experience with this stuff. Any comments / advice would be welcome. I might only get one shot at this so I have to make it a good one, ie. that my notice goes round the staff at the clinic, not straight into the bin,

Thanks
dt

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6 years 8 months ago #1653

Any advertising execs around to design a slick poster for pinning up in hepC clinics? Must appeal to generic-phobic medical staff who are needed to get on side.
dt

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6 years 8 months ago #1654

yes..good idea!
dointime wrote:

Any advertising execs around to design a slick poster for pinning up in hepC clinics? Must appeal to generic-phobic medical staff who are needed to get on side.
dt

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6 years 8 months ago #1668

I am printing cards to give out to hcv patients

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6 years 8 months ago #1678

dointime

"When I asked for a script to take to India my doc said it would be no good to me because he is not licensed in India"

I really feel for the hoops you guys in the UK are having to jump through.
When I got my sof and riba from India it arrived with a script written
out by an unknown Indian doctor even though I had provided a script from my own Australian doctor.So really all your reluctant UK doctor would only be doing by writing a script is saying it is ok for you to take these drugs in the UK and it is ok for an Indian Doctor to legitimately write out a script for you.I got my stuff through Greg.I am not sure it works the same with the buyers club.Hope this helps


Gen 1b 40yrs,tx naive, f3/f4.VL too high to quantify.
Started tx 12Oct.sof and riba India via greg.Dac from Mesochem.
4wk result virus not detected,all liver functions in normal ranges.
Only SE intermittent insomnia.Feel great and grateful otherwise
Last Edit: 6 years 8 months ago by miko3. Reason: Grammatical errors
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6 years 8 months ago #1687

Cards - that's a good idea Tweakmax.
Mike - interesting about the prescriptions. I didn't know it worked that way.

I think that many UK docs and medical people are just too busy chipping away at the coal face to get informed about the generics. I am sorely troubled about the NHS spending mega-bucks to treat so few people, while so many others have to wait. There are so many people like me in the baby-boomer generation who could find the £££ for the generic drugs if this option were made known to them by their specialist as an alternative to waiting. This would free up NHS money to subsidise still more people. There are a lot of people who are not brave enough to take the initiative by themselves without their specialist. They are in various stages of illness, brain fog and general impairment and just can't raise themselves to it.

Well - preaching to the comverted now, but I find it so frustrating when the eradication of hepc is now within reach and yet still so far away. I can't see it happening in the UK until the specialists are on board. My impression is that my doc will not be interested in anything less than the SVR figures from the generics. To that end, the best hope for the UK will be the SVR figures from the Redemption Trials announced at EASL and AASLD. That is how important these trials are.

dt

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6 years 8 months ago #1696

Agree DT - Maybe, just maybe if UK Drs understand DrF has Professionally tested these generics as safe they 'may' be more open to writing a prescription? I mean, if they are not, it would go against all their reasons for being a Dr in the first place ......
Surely? .....

It 'could' also be said, that by refusing to write a prescription for legitimate generics, they are also putting their patients at risk from less reliable sources of meds and worsening liver disease with NHS delays. I guess they would need to stipulate that medicines were ordered via Dr F & his trial or Buyers Club.

I mean, if they blatantly refuse to at least consider this, I can't think of any reason do to so - Can you?


GT1a Dec14 F2/8.7 VL 900000-2.5M
Jan16 Hepcivir-L MonkMed/Redemption
Baseline: VL 913575 Alt 76 Platelets low
Wk2 VL1157 Alt 23
DET Wk 8 VL 32 Alt19 'In the slow lane'
June16 Fibro 5.7 F0/1 LIF 1.5
Wk 11 VL<12 Alt 13 Det/Unq
Extending tx 12 wks Mylan Sofo/Dac MonkMed
Wk 14 VL <12 Det/Unq
Wk 16 VL UNDETECTED
Wk 22 + 4 Wks Sunprevir FixHepC
Wk 24 UNDETECTED Alt 13
Wk 12 post tx SVR12 Wk 26 SVR24
Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC
Last Edit: 6 years 8 months ago by LondonGirl. Reason: Tidy up
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6 years 8 months ago #1697

Hi LondonGirl,

Many thanks for your ideas. I think that UK people have to travel to OZ to pick up their meds via the buyers club these days? I was more thinking about Greg's shipping sources to the UK for twinvir being operational, or Indian Harvoni and dac. A UK testing faciility would have to be set up to convince UK docs about safety. If they can do it in OZ then why the hell can't they do it here? I floated the argument about my waiting and getting more sick but that didn't bother him at all as opposed to the risk to getting fake meds! Unbelievable really.

Another thing I am having a hard time not hitting my doc with is - what is he going to do when the Pakistani, the Indian, the Chinese, the Polish communities all arrive on his doorstep with their pockets full of pills obtained for them by relatives from China, India and Bangladesh? Does he think he can just dismiss them, tell them to throw the meds down the toilet that their families spent their life savings to buy for them? This tsunami is going to arrive whether he is prepared or not. A doc who was paying attention would realise that I am just the tip of the iceberg and have me in to pick my brains on what to expect and how to prepare. But specialists are generally not good at listening. The only thing they listen to are SVR numbers.

I might be talking myself out of any action here, on account of the futility, but I'll let all suggestions rattle around in my head and play it by ear next time I am at the clinic. There is a way, I just haven't seen the opportunity yet.

dt

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6 years 8 months ago #1724

dointime

" I think that UK people have to travel to OZ to pick up their meds via the buyers club these days?"

Why would you have to come all the way to Oz to get your meds?.I mean we would love to have you here spending your money,but some very cheap fares London-Delhi,London-Chennai,London-mumbai and other variations are often available.30 day visa on arrival is now available at major airports,India is full of very highly qualified hepatologists often with a string of English degrees.See the Taj,ride a camel in Rajasthan,,visit the Dalai Lama in Mcleod Gange and go back with your meds at a fraction of the cost of travelling to Australia.


Gen 1b 40yrs,tx naive, f3/f4.VL too high to quantify.
Started tx 12Oct.sof and riba India via greg.Dac from Mesochem.
4wk result virus not detected,all liver functions in normal ranges.
Only SE intermittent insomnia.Feel great and grateful otherwise
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6 years 8 months ago #1727

Sounds good!

But mebbe pple trust the aussie medical system more

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6 years 8 months ago #1752

Hi miko3,

You are of course correct about places to access meds. You took my sentence out of context though, and I apologise if it was confusing. I was referring to a post by London Girl and commenting that to access the buyers club meds it would be necessary to travel to Oz, implying that from the UK, that would not be my first choice. If I had to travel then I agree that the Indian international hospitals put many hospitals here to shame, and that includes their consultants, many highly trained all over the world. The only thing they do not have yet is the generic Harvoni, but that should come soon. For myself with chronic fatigue, mail order is my preferred option, and no sight sweeter than the Fedex delivery guy.

dt

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6 years 8 months ago #1757

I hear you DT - 'Fedex is da main man' !


GT1a Dec14 F2/8.7 VL 900000-2.5M
Jan16 Hepcivir-L MonkMed/Redemption
Baseline: VL 913575 Alt 76 Platelets low
Wk2 VL1157 Alt 23
DET Wk 8 VL 32 Alt19 'In the slow lane'
June16 Fibro 5.7 F0/1 LIF 1.5
Wk 11 VL<12 Alt 13 Det/Unq
Extending tx 12 wks Mylan Sofo/Dac MonkMed
Wk 14 VL <12 Det/Unq
Wk 16 VL UNDETECTED
Wk 22 + 4 Wks Sunprevir FixHepC
Wk 24 UNDETECTED Alt 13
Wk 12 post tx SVR12 Wk 26 SVR24
Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC
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6 years 8 months ago #1758

Yeah LG, my new best friend. :)

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