There has never been a better opportunity to be educated, via the internet and sites like these. I have come to see that I can’t afford not to be. My GP has missed all of the important turning points when I went to him and I could have been diagnosed but was not. Lately I have come to suspect he missed diagnosing a thyroid problem after I had interferon tx. Here in UK they penny pinch on the tests, only do one when actually 6 are necessary, then tell you you are fine, but you are not. So another decade goes by fighting fatigue before you realise the GP gave you a bum steer. It is only in the last few years that we have had the technology to take charge of our own health, get our own blood tests, read up on all the relevant information from others who have been through it and done the ground work for us. To me, all this is a bloody miracle compared to relying on the medical services.

dt

This business of what is approved or not seem to me to be a real can of worms.
Here we have brand name drugs that are approved and under patent, while their generic versions are deemed to be not approved.

But hang on. Pharmacies all over are stocked with generic versions of brand name drugs, many manufactured in India, and nobody is questioning it. Why is that? Is it because the patents on all of them ran out so it’s ok to import them now?

Gosh I’m confused. The NHS is practically kept afloat by the use of Indian generics, yet I have never seen any trials run on them or suggestions that they were sub-standard. Were they all considered to be suspect until the patents ran out, at which time they magically became AOK, bona fida, approved?

Is ‘approved’ in this case just another name for ‘patent-protected?
Cos that is an interesting choice of a word which is usually understood to mean a drug which has been tested for safety and efficacy and passed by the FDA.

dt

Yes, and this is what concerns me the most. It is the 21st century and we are just getting around to exposing child sexual abuse and talking about it. This is largely happening because those children grew up and found their voices and spoke out. We still have not gotten round to exposing abuse of the elderly and other vulnerable sections of society, and that could largely be because they either die or they can’t speak up and never will be able to. The people who perpetrate this kind of abuse have a talent for finding people who are not in a position to report them and be heard.

Some may think that my calling it abuse is overreacting. They may have less of a problem to name what LG has experienced as ‘bullying’. However, I think that a bit of bullying is the thin end of the wedge. Bullies test the water. Some will continue to go as far as they think they can get away with. In LG’s case – thankfully not very far. The only successful exposure so far has been from a few whistleblowers who secretly filmed abusive behaviour from medical staff. This is why I would advocate for nipping the bullying behaviour in the bud, before it progresses to serious injury and even deaths. The people who can’t speak for themselves need somebody to do it for them. LG, keep your notebook at the ready.

dt

So, another twist in this incredible saga. I didn’t see that coming as a side effect of the Redemption Trials being registered in the US. Honestly, I am sometimes just goggle-eyed when I learn about the events surrounding the generics. You couldn’t make it up.

dt

I am wondering if there is something particularly toxic about medical care funded by the government and thus a monopoly. I recall a visit to Cuba where I stayed in a few different hotels, some government run and some privately owned. The difference was like night and day with regards to the service I got. The state employees all looked at me as if I were an inconvenience that they wished would just disappear off the face of the earth. Well, their jobs were guaranteed. They had no incentive to actually do what they were there to do, and a lot of foot dragging took place before they could be bothered. I saw the same thing in other government run places, supermarkets, etc. By contrast, the privately owned places could not have been more helpful. Service with a smile. They wanted customers. They wanted to have jobs to go to. Now, I do not want this to turn into a political issue, I just want to make the point that state medical care is perhaps not offering the correct incentives to encourage service with a smile.

There’s something else too that I want to mention. I think that some medical departments are thought of as more ‘glamorous’ places, or exciting places to work than others. Strangely enough, virology is at the moment an exciting area with many scientific breakthroughs taking place so you would expect it to draw the brightest and the best. While this is in fact happening (eg. the doc), there is a lot of dead wood to get through sitting in high places. The arrival of the DAAs have taken this lot by surprise, just when they had become top authorities in their field. With the DAAs so recently approved, many do not have a lot of experience with them, and so they find themselves in the uncomfortable position of being the supposed expert but they don’t know the answers. I was struck by a recent post by the doc which said something like he had treated more people with hepC using the DAAs than all the other liver docs in Oz put together. So while these other guys have put the years in, and their experience is certainly valuable, there’s this new generation on their heels, just arriving, who know so much more about the use of the DAAs. I have seen this in other fields like technology and it makes for a lot of in-department tension and also a lot of early retirements.

And lastly, another word about what some view as the more ‘unglamorous’ areas in medicine to work, the care of the elderly being one, particularly if dementia is involved. Here you will find the disenfranchised and you will also find those who prey on the vulnerable, the weak and the powerless, especially those who have no family to speak for them. When you get that snotty receptionist or that arrogant consultant you can walk away. But imagine how much worse they could inflict on you if you couldn’t walk away. There is a serious problem with this kind of person in the medical services and it needs to be blown wide open. Thus, what you are doing is important LG, and it has much wider ramifications for all the people currently under the thumb of some sadistic m.f. while society turns a blind eye, as if we won’t all get old some day.

dt

Hoorah, job done at last! But only after you had to go through a ton of unnecessary sh** to get to the right person who would get it done.

I’m not sure that it is about stigma, or let’s say I think it is about more than that. I think it is about power and the misuse of power. You get all the little Hitlers who feel the need to make it clear to you that you are in their jurisdiction now and you had better tow the line. And if you don’t bow down and scrape and grovel and do what you are told, well then heaven help you.

I can’t see this deplorable state of affairs changing any time soon either. The only answer is to find other more palatable alternatives to go to when help is required. This is easier if you can pay for it than if you can’t, but some resources are still free, like the fixhepC website, and information on the internet.

I just ordered and received my first blood tests done privately. No doc necessary to do it for me for a big fat fee. Didn’t cost that much. Results came in one day on their website, all the information there in front of me with the interpretation and a doc’s consultation included if I wanted to request it. I’d have paid the money just to feel how good it felt, how empowering, to order my own blood results without having to jump through a dozen hoops and explain why I wanted them to some a’hole who was invested in keeping that information from me. Information is power. It always has been. The power mongers are losing their little fiefdoms to the age of the internet and the spread of knowledge that was once their exclusive domain. We need them less and less and they hate it. None of what we are all engaged in here now would have been possible even 20 years ago.

I admire your tenacity LG. If you want to take it on I’d love to read what you write about your experiences.
dt

Yes it is big, and in so many ways.

– It is not sponsored by Big Pharma.
– The sof/dac combo will finally get the trial results that have been sorely lacking.
– The generics naysayers will have nowhere to hide.

… and so much more which will no doubt unfold in the fullness of time.

dt

Hi LG,

Glad to hear that your bloods are going somewhat better, but with room for improvement. I always ask for a blue butterfly needle because it is smaller than the green one and allows your blood to flow more slowly.

In case you get another refusal to use a butterfly you could consider taking along some of your own. But be sure to get them from a totally reputable source !! I have heard rumours about these kinds of things being cleaned and repackaged in some countries for sale a 2nd time around. Aargh!

dt