TOPIC:

"Why this site is not overrun with refugees from that situation amazes me. People seem to be so "conditioned" to following the rules and accepting the status quo."

I think that this is a very big issue and you are rightly grasping it Klhilde. It is an issue of Social Compliance, whatever labels you put on the various groups within society. I have also been observing people who seem unable to step outside of the 'chain of command'. Even when I put all of the information in front of them they would rather roll up to the NHS and get their interferon than consider a DAA tx by another path.

I watched a program last night by Derren Brown about Social Compliance.
www.channel4.com/info/press/news/derren-...nnel-4-with-the-push

There can be no clearer demonstration that there is a group of people who can be made to do just about anything rather than step outside of the 'chain of command'. One wonders how close they would let themselves come to their own death rather than take the initiative necessary to save their own lives.

So I feel more gloomy about the prospects of this cohort than I ever did. I am not even sure any more that there are going to be massive numbers seeking to save their own lives. But it is a possibility and it needs highlighting.

dt

That dt, is the $94,000 question...
Cattle...lined up at the slaughter house while the gate is open and they are free to go.
I am simply amazed.
I communicate daily with people who say: "I really want to believe the generics are real", or "I would like to order generics but they are not FDA approved". And so on...
I just don't know...
Sad.
Mike

And now I am going to have a bit of a rant.

Every day on Medhelp I am seeing a screed of posts of the general tone - help me, I want to get Harvoni. Or help me, I have been denied Harvoni and I can't afford it. Where have all these people been during the last 6 months? Where were they when Mike wrote his very comprehensive story on Medhelp. Where were they on the numerous occasions when the name and website of Greg Jefferys came up? How much can ignorance be excused?

I am sorry if this sounds harsh. But I get frustrated because I want to help but it is a full time job to keep on giving the same answers every day to people who could look up the answers that were given yesterday. RTFM. Most of us already have at least one full time job, which is to get ourselves cured of hepC. While willing to give others a hand up, there are some who are simply a big drain on my scarce resources, who ask for all the info and then - nothing. Time Wasters. Again, I feel that I sound harsh, but honestly I am at the point of saying to hell with them all. They need to get with digging their own garden because I am done digging it for them.

So to people like Greg and some on this site I say - I don't know how you have the patience to keep on going with the helping, but I think you are all heroes. Klhilde, if I am anything to go by, I think you have correctly divined that the resources to provide the help necessary for these people are lacking. If you have any solution to this it would be most welcome.

dt

Yep know what you mean guys, Ive told people tried to help them , they think Iam doing the wrong thing, while they wait for their "proper doctor with the proper medicine. Control over people.... I think something like that happened in Germany around 1933 ? And Kevin you know what your talking about is right on, people on this forum are different then most.. good on us we rock

Thanks DT & klhilde,

While I agree with much of what both of you are saying, we need to remember when talking about both intuitive/sensor and social compliance issues we are mostly talking about people's preferred styles. Very few people are firmly in one camp or the other, they utilise skills or strengths from both sides of the equation which they will favour to a greater or lesser extent depending on circumstances and timing, in most cases without realising they are doing it. However, some are quite skilled at conciously moving fluidly between what at first appear as diametrically opposed positions (actually just preferences) to allow them to gain the advantages that can accrue from each side. What is important when talking about change is that we are all mindful of others preferences and allow for them when dealing with those who appear to differ from ourselves. Viva la difference!

In practice this probably means we first need to engage and empower the 20% as defined by klhilde. This is the easy part of the task but it also creates a reservoir of 'authority' that will then start to attract those in the other 80% who already show some intuitive skills but still require data and convention to back their decision processes. That is how change works, for some it is a leap of faith while others need to be coaxed or coached. And yes, some will never take the decision themselves, they will only treat when instructed/ordered by their doctor/spouse/government.

I also await more on the Bulgarian adventure but remember, these 20%ers don't play nice if they get warehoused.

One of the first things a teacher must realize:

You can't force someone to learn. You can expose them to knowledge in an interesting and engaging manner.
Set the plate, so to speak. The eating, they have to do on their own.
M

Yes I know Mike, I was gentle , and excited to share in the good news, to encourage.That is all you can do. Jill

They delete everything on generics ( Medhelp) so I dont post there anymore. I AM NOT A DOC BUT I can really help someone to get generics so they have a better quality of life like I am trying to have. I never bothered with a cure till a year back as was going on the generics route but got Harvoni from the state so been lucky. But I am going next week to buy meds for my mates from India.
I also posted some current Indian prices I found in another thread.
FDA is pretty strict with India so I believe the generics are of sound quality.

Imagine if you have AETNA insurance.......

www.aetna.com/products/rxnonmedicare/dat.../GI/hepatitis_c.html

People with HCV in the states are so screwed.

Until they find REDEMPTION

So, people in the U.S. reading this, join Dr. Freeman's REDEMPTION trials.
Guaranteed quality generics.
Guaranteed shipment success.
What are you waiting for?

Mike

This an interesting topic I think K's comments about compliance makes a lot of sense too me.

I think at least 50% and more have no real understanding of the disease the rest believe they will be treated
by the Dr's treating them before they get ill the latter is something hard to deal with.

There is also a group who won't/cant pay for treatment the whole subject has quite a few variables.

I was told this week Ireland had treated all F4 and above they know of in the last year take in account
the total spend was 36 million at about 60k per person,it looks like less then 1k patients they are now trying to lower
the score(12) to get in the pool.

I wonder,how many f4 are infected they don't know of or if any other countries will have similar results in the first year
what does it mean for f3/2/1/0 in terms of early intervention.

Sorry if I went of topic.

Here is the take on the previous criteria by a well-known medical professional HCV activist

"First, the 2 insurance documents in this thread open the door to treating F0-F4. The only restrictions they continue to have that aren't consistent with the HCV guidelines www.hcvguidelines.org/ are those pertaining to drug and alcohol use. However, there are ways to work around that.

RE Child-Pugh - technically it could be applied to everyone, but its only clinically significant when someone is cirrhotic. In the case of the Anthem criteria, they are using to determine which treatment is appropriate, and not using it to exclude earlier fibrosis stages."

"About the Child-Pugh, here's another way of looking at it:
You could apply it to anyone, but why? Just like you could apply the Glasgow Coma Scale to assess my consciousness level, but given that I am sitting at my computer rather than in a neuro ward, you wouldn't.
So, if a patient presents with obvious cirrhosis, than a C-P score is warranted."

I still can't decipher it. I believe it was crafted to be that way.
I'm no good at math either.
Mike

mgalbrai wrote:
I still can't decipher it. I believe it was crafted to be that way.
Mike

I did start to post on this earlier but my attention was needed elsewhere. If I remember correctly I was progressing along the lines of "Is this a final version or a draft copy put together by some poor student doing vacation work to pay college fees?" So, much along the same lines as you Mike. I don't have any understanding of what would constitute a legal document from a U.S. perspective but there do seem to be holes big enough to drive a truck through.

And LPs comment about Glasgow Coma scale is appropriate. Applied to our example of the CP scale that would imply that every person on the planet who has a liver and is still alive is at least a 5 on the CP scale as the lowest you can score is 1 for each of the five criteria as they just don't give out zeroes! That implies a two year prognosis of 85%.

I suspect the only way you will know for sure when it gets applied in the real world.

A highly sceptical optimist.

I have just been informed that Anthem is no longer denying treatment based on fibrosis scores. That is what all that gobbledygook means. They still have that really smelly alcohol/drug requirement. Doctors, who had patients who were denied tx by Anthem under the old criteria based on F scores, are calling to tell them they need to request approval under the new guidelines. There seems to be some litigation looming against Anthem that forced them to relax their restrictions on coverage.
I was told by a reliable source late last year that some BIG changes were coming for HCV suffers in the U.S. I guess this might be one of them.

We will see.
Mike

"One of the first things a teacher must realize:

You can't force someone to learn. You can expose them to knowledge in an interesting and engaging manner.
Set the plate, so to speak. The eating, they have to do on their own."



It may have been said before, but I think the information in the signatures on this site speak volumes and people surely must notice them?


J.