klhilde

I hope you keep us posted on your travels. I have enjoyed hearing about your adventures. I have also admired your determination to cross the world in search of a cure for your hepC. What an amazing CAN DO attitude.

dt

The best tip I have, and cheap:

Get a plastic straw and cut the top diagonally so that the end looks like a pointed scoop. The size of the straw should be small enough to fit into the capsule. Scoop powder into capsule. No spillage!

dt

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

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

For a year I have had pain in the upper right side of my mouth and face from the trigeminal nerve. It was never severe and it is improving but it is nasty. Feels like toothache sometimes, jaw ache other times, cheek ache other times. It kicked off after a load of dental work. My best guess is that it is connected to my right shoulder muscles which are pinching a nerve somewhere on the way up to my face. I also get random stabbing pains now and again anywhere in my body. I am hoping that when I get rid of the hepc virus this nasty nerve stuff will disappear along with a knee pain which developed this year on the site of an old knee injury. Also my chronic fatigue.

I’d like to think that all my aches and pains will disappear once I am SVR but there’s no way to know until I get there. Meanwhile each new malady is queuing up and needing action which I am putting off. I really need to get this virus out of my body and get to work on any other damage that is left.

dointime