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Thank you for the above post.
In one of my files there is a snarky letter from my insurance company stating that they have specifically denied my specialist’s requests for Harvoni, that a cheaper regimen (which is known to damage the liver during treatment), and additionally includes Ribavirin, is my only choice – and wait for it – (in bold print, referencing Harvoni) “You may have this presctription filled, but (insurance company name redacted) will not pay for it.”
Someone actually took the time to add that bit to the rejection letter, and went out of their way just to rub my nose in it.
I found myself asking “is it me”? What did I do to deserve that sort of searing hateful condescension? The answer is, that after having waited a year for an appointment with a specialist, I did absolutely everything required of me.
However, rather than accept the inevitability of the second rate course of therapy offered, and intolerable tone of snarky condescension being rationed out by my insurer’s anonymous representative, I chose to take them up on their offer to explore other options, and found the Fix Hep C community.
In another thread, Dr. James posted a graph of project joins. https://fixhepc.com/forum/fixhepc-admin/1014-we-are-moving-the-awareness-needle.html#16243
Through volunteer work I have done previously, I am familiar with the type of trajectory represented in the above graph . The graph looks nearly identical to one associated with a project I was privileged to help administrate, and in short what the graph tells me is that THIS project is reaching a point of critical mass with regard to the number of people it is reaching, and that from here, the numbers of Fix Hep C community joins are likely to increase exponentially.
As this critical mass is reached (and I believe it will be), users will learn about the Fix Hep C Buyers Club, and will reject online communities which fail to offer tangible and viable paths to solutions.
My prediction is that eventually, forums like the one mentioned earlier in this thread will rightly be exposed as the servants of greed that they are, and that their membership rolls will begin to shrink as people learn that real solutions are available today, here, and now through fixhepc.com.
This thread has been up for a while, but I think it deserves a ‘bump’.
There are alot of seriously ill, seriously frightened people (with Hep C) who after years of hiding in the shadows, are desperate for ANY hope or support available.
My observation (as has been pointed out by others) is that the (aforementioned) dephi forum is a self aggrandizing cult of personality, which is really just there to feed and stroke the ego of the forum owner, who in turn toadies to big pharma to be able to continue dispensing nonsense to those desperate and timid enough to be taken in by her self serving drivel.
I may have come across the delphi forum breifly on my way to finding the Fix Hep C forum. Honestly, I just don’t remember. After all, I was looking for a solution, and anything that didn’t offer a solution (and there were many) was quickly identified as garbage, and tossed aside along the way here.
Someone said earlier that we don’t have time to simply ‘wait’. That’s exactly right. After decades of suffering the subtle, and sometimes not so subtle effects of this illness, with no cure in sight, I can tell you that an army of self styled, self serving gurus, naysayers, and ‘gate keepers’ could not have persuaded me into “wait” mode. Not for one minute.
More than 20 years ago, a well meaning specialist informed me I would probably die of this disease – eventually.
Well, I’m still here, and after believing for decades that I was most likely terminally ill – there is a cure, a real honest to god, cure.
Nothing could have stopped me from coming here, and seeking that cure. And God willing, I will have it!
Chambers Brothers: “The time has come today.”
No doubt the team here saw this possibility, and prepared accordingly by relocating the site to Myanmar (Burma).
My appreciation and admiration for their dedication to the process and cause of eliminating Hepatitis C worldwide is beyond words.
The purpose of the site after all is not to stick a finger in the eye of big pharma, but to provide a public forum for, facilitate resources, and provide peer support for people who are in sincere need of lifesaving medication.
Sadly, I don’t believe a ‘humanitarian’ cure is the goal for big pharma.
In order to maintain revenue streams, the rate of infection must necessarily remain significantly higher than the cure rate.
For big pharma, the problem with the new DAAs is that the cure rate is nearly 100%. If access were not strictly limited by keeping the price onerously high, it is conceivable that Hepatitis C could be virtually wiped out world wide within a few years, and that would be very bad indeed for the business of profiteering.Frankly I think if we were seeing 96% cure rates for HIV, rather than for HCV, the worldwide outcry for universal access would be deafening, and overwhelming.
Well, here’s a thought. Monopolies are supposed to be illegal in most “free” countries. I really don’t see how having a monopoly on a lifesaving medication is much different than say having a commercial monopoly on emergency telephone calls. If you could only use one telecom carrier to dial in for a life threatening emergency, the price of the call was $94,000, and you couldn’t pay for the call up front – you’d die. Ridiculous, right!?
It is ridiculous.
So world governments, how much will it cost in terms of gross national product and lost revenue NOT to treat hundreds of millions of citizens who will eventually stop producing anything except skyrocketing medical costs?
Why not simply save hundreds upon hundreds of billions up front, negotiate a reasonable settlement to buy the rights to the medications, and pay off the sordid corporate pirates in a lump sum? Note: You can borrow the money from China if you have to. They’ll end up producing the medications anyway.
This is my first post, and I’d like to preface by saying that the FixHepc forum is a unique, and uniquely valuable resource to those of us who have lived (in some cases for decades) with a practically “incurable”, and possibly terminal illness – only to learn that while there is now the promise of a nearly 100% solution, for the vast majority of Hep C sufferers, it is held out of reach.
One can look at the heavy handed actions which are the subject of this thread as an impediment, or as acknowledgement that this effort is truly taking hold, and making a difference. Clearly, for many of us it may literally be the difference between life, and death, a real cure, or continued suffering and decline.
Rewinding to early 2015, after learning that treatment was available, I personally waited a year for an appointment with a specialist. When I finally got one, my specialist’s request for a well known Sof/Led medication was denied, and a cheaper regime, which is actually known to directly damage the liver during treatment, was offered in its place. No need to go into detail here, but I’ve been there, and done that – without success, and for me going there again is not a “choice”, it is an absolute last resort.
Dr. Freeman must do as he believes right, and whatever he chooses to do, I will respect. That being said, his selfless humanitarian efforts in creating this site and providing counsel, a place, and resources for Hep C patients around the world to share practical information toward becoming HCV free are easily worthy of nothing less than a Nobel Prize.
Fitz
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