Sorry to use up a thread for this but I felt this was important.
I got an email today from someone named Annie Giannini asking if I had sustained any permanent damage from combo therapy and, if so, would I be interested in joining a class action suit.
While I understand the temptation to try that route, I feel that if HCV patients start suing drug manufacturers, the effect on research would be chilling. I don't know about anyone else, but I knew going in that there was a very real chance of major complications from tx and accepted the risk. After all the alternative was certain to have less acceptable side effects, namely, the real possibility of death from liver disease.
I am interested in all of your opinions and whether you have also been contacted. I don't know Annie Giannini and wonder how she got my address. Any ideas?
I posted something to that effect in a thread down below.
The person claims to be a med help member and got our addy from medhelp contact pt list. she was nasty to me when I questioned her intentions. I saved our email exchange.
I got the same email, so I suspect the contacts were made through this board. I agree with you wholeheartedly, Galen.
Since I am now disabled due primarily to the exacerbation of cryoglobulinemic vasculitis, I would probably be a good candidate for a lawsuit. But, knowing that 2 months into tx, I chose to treat the cryo while persisting with INF. I just finished my 68th shot. Like you said, I'm doing this to save my liver. I only have one liver which functions normally even with stage 3 Fibrosis. It handles the 500+ metabolic functions necessary to keep me alive. Without INF, I would probably reach cirrosis, and who knows what else, before the estimated 5 yrs to get a transplant liver (blood type O Pos- universal donor- the longest wait).
It is tempting, so I'm glad you brought it up here on the forum. Thanks, Dave
This is some of it, just to give an idea of what happened:
-- ***@**** wrote:
> I am a hcv patient who has suffered permanent effects from treatment
> with Peg-Intron/Rebatol. If you have suffered any long-term or permanent effects from this treatment, please contact me if you would be interested in a class action suit now being formed.
> Annie Giannini
No, thanks/ I am not interested in making an attorney wealthier.
Class action suits benefit them more than the clients.
Eventually everyone loses when prices go up after a payoff. If the
lawsuit was to demand disclosure or improvements, I would be more
Please don't contact me again. I knew the dangers when I started these
meds, I read the literature, no one gave me any guarantees, and I still
chose to do it. I was not coerced. I can't blame the drug co. Is not
responsible behaviour in my opinion.
Sorry to bother you. You will not be contacted further. You obviously aren't one of the people who have been paralized or blinded, etc. which were never warned of. The only way to stand up for injuries against a 10 billion $ per year company - is in numbers. The lawyers are standing up for us. They are 100% putting up their own money in the case. Sorry to hear you are so close-minded and don't have all the facts. Good luck to you.
Best thing to do might be for everyone who received this e-mail (or a similar one) to write Cindy at MedHelp - and let her know that her board is being used for solicitation purposes. I'm sure she'd be grateful to learn of the problem.
You can go to the <a href="http://www.medhelp.org">MedHelp Home Page</a> and then click on the 'Contact Us' button from the list on the left - then fill out the e-mail form (being sure to put 'Administration' under the 'Route To' drop-down menu).
Also, this same person 'Annie G' person has been trying to solicate at at least one other Hep C forum - that I am aware of.
Quite often law firms will 'hire' people to go around and fish for potential business on class-action lawsuits. And their reimbursment for 'a succesful catch' can be on a comission basis. The more bodies/fish they bring to the lawsuit - the more they get paid.
Interesting..... because I don't see Galens' name listed on the patient contact list. That.....and I post my e-mail addy all the time here...yet nobody has contacted me.
I sure wish that gal would send ME an invite. I would give her an EARFULL.....or is that an "eyefull" since it would be an e-mail reply. hahahahahaha
These folks are only out to serve themselves and not the Hcv community. They can't damage any compant as large as that. All any suit does is raise the cost to consumers. The Tobacco industry is a great example of that. Those lawsuits did nothing except raise the cost to the consumers. It did not damage the companies at all.
The warnings about the possible dangers are printed right on all the patient inserts on all of our meds. If the people are too stupid to read them then thats their own fault.
These people are greedy idiots.....and are certainly NOT friends of the patients.
I wonder if I can sue "The Badger"....for makin me CRAZY on my tx?? I'm sure he was put there by George Bush and Haliburton. Everything nowadays is all their fault isn't it? I just gotta make the connection.
I agree. We all knew the risks at the "get go"....
Cuteus:::: Wow. That "Annie" lady sure was rude.....and for her to say those terrible things about the dire future of our bodies......kinda sounds like that post the other day to someone about going blind. How insensitve of people. We all know what we "signed up" for. I know I read all of my med information BEFORE I put anything in my body.....
No one forced me to do tx.
I agree w/ you all about a lawsuit. My sister was in on the phen-fen lawsuit and even though it did cost the company alot of money, it didn't "ruin" them and my sister has yet to see a dime. The lawyers made millions tho. John Grissom has a novel out about tort lawsuits that really tells it the way it is. Besides, I don't think I've talked to anyone here that didn't know the risks going in. In fact my husband was against tx. at first because of the risks, but I convinced him. Joni
doesn't it sound like it? is that the same individual that first mentioned this lawsuit in this forum? never heard of it until then...
here is what my beautiful 30yr old daughter send me not too long ago;
"Hey, I am forwarding this email after watching a program last night about a twice convicted felon, who was serving a 14 year sentence for robbery, getting a heart transplant in California. With 7 million people
in CA with no health insurance, 1 million dollars was paid by taxpayers to cover the inmate's transplant. How does it make sense at all? I'm planning on committing a felony as I currently have a cold. Who's
> Today we mourn the passing of a beloved old friend by the name of Common Sense who has been with us for many years. No one knows for sure how old he was since his birth records were long ago lost in
bureaucratic red tape. He will be remembered as having cultivated such valued lessons as knowing when to come in out of the rain, why the early bird gets the worm and that life isn't always fair.
> Common Sense lived by simple, sound financial policies (don't spend more than you earn) and reliable parenting strategies (adults, not kids, are in charge). His health began to rapidly deteriorate when well intentioned but overbearing regulations were set in place. Reports of a six-year-old boy charged with sexual harassment for kissing a
classmate, teens suspended from school for using mouthwash after lunch, and a teacher fired for reprimanding an unruly student only worsened his condition. It declined even further when schools were required to get parental consent to administer aspirin to a student but could not inform the parents when a student became pregnant and wanted to have an abortion.
> Finally, Common sense lost the will to live as the Ten Commandments became contraband, churches became businesses and criminals received better treatment than their victims.
> Common Sense finally gave up the ghost after a woman failed to realize that a steaming cup of coffee was hot, spilled a bit in her lap, and was awarded a huge settlement. Common Sense was preceded in death by his parents, Truth and Trust, his wife, Discretion; his daughter, Responsibility; and his son, Reason.
> He is survived by two stepbrothers; My Rights and Ima Whiner. Not many attended his funeral because so few realized he was gone. If you still know him pass this on, if not you can give him a second death.
Count me in. I am a liberal (no matter how the word has been debased for political purposes) and believe that it is our responsibility to try to make things better in the world. But personal responsibility, common sense and willingness to accept that sometimes things aren't fair are requirements of being an adult.
So unless Annie's doctor told her nothing, hid all product inserts from her, kept her off the Internet and out of libraries, and prevented her from writing to drug companies, other doctors, and other patients, she has no case. I am sorry for any permanent damage to her and to anyone on tx, but like the rest of you, I was warned and I did my research, and I made my decisions accordingly.
I kept my copy of her email, but did not reply. Perhaps I can sue her for the pain and suffering inflicted on me in having to realize that I, too, might have these side effects.
O Positive is the universal donor- able to be used for people with other blood types. I think this lowers the availability of livers from people with O Pos bloodtype because they can be more widely used. That's what I read in an article from the New York Times, I think. It was about the transplant supply in the US.
Maybe somebody else knows more about it. Hope things are going well for you, Dave
I was in a class action suit against Sprint and received a check for $.17. I have gave depositions several time and she is going to have to show they intentionally meant to harm her. Over 31 years I saw a lot and accidents do occur unfortunately but I know of only one case where a doctor was sued and indicted for deliberately killing a neonate. She massaged his carotid arteries but it was a hung jury. I know doctors are busy but let me again stress, it is your legal, moral, and ethical right to know about any tx. That is the only way you can make an IMFORMED CONSENT FOR TX. This is the law. It has been left up to me too many times but I did. I will help anyone here in anyway I can and when it comes to this I know the law. I was named in a lawsuit because my name was in the chart only after I had an attorney sending this family I would sue because I saved her life twice and I wasn't going to have my good name smeared. Prayers.
I am sooo greiving for Common Sense. I loved that post you gave us. It sure is a "mixed bag", isn't it? I could not help but get a laugh about the writing, and yet the truth of the whole thing gave me... pangs of long forgotten memories of respect and the common sense that has been missing from a chunck of society these days..... Oh, well....I just hate to see (as someone else pointed out) the progress to SVR possibly being hampered by such ignorancy.
My Dr, along with Schering Plow and the phamisist all gave me the information about the SX of TX. In fact they went out of there way to make sure I understood what was at stake. How could anyone in there right mind try suing drug manufacturers that have cured so many.
While I agree with the sentiment of personal responsibilty and the destructive nature of some lawsuits, I am in the minority here re lawsuits in general. As HepC patients on tx we are at the mercy of the two most profitable industries on the planet- Pharmecuetical and Insurance. If lawsuits persuade those industries to behave more responsibly, Go for it. These meds cost $2500 a month, not because of lawsuits and certainly not because that is their value re cost, but because that $2500 per month is what they can get. If they could get $10000 they would....JMHO
I am PROUD to be associated with people who respond to greed like this. The only thing is I think the drug companies know more about complications than they tell you(for precicely that reason,fear of being sued).I have an uncle ,by marriage, who I've never met who did combo therapy. I didn't know it till I was finished. He has been to the Mayo clinic several times because he is losing his sight. They are pretty sure it is from the tx drugs reacting with fillings in his teeth that is making him blind. Pretty wierd, huh? Even after something as horrible as losing your sight he doesn't blame them. I hope I could have the same attitude under the same circumstances. Indiana does have a claim against the Badger though since it was purposeful and malicious. Galen- it was nice to see you here and I hope your virus-free life is great.
hey all...hope this finds everyone reasonably well.....i couldn't help but respond to this one. sometime ago, i think back in early march, i received from another party, an attached e-mail from the same women, annie g.....it so frightened and disturbed me, as my side effects had been enormous, severe muscle atrophy spl?....eye sight detereorating etc. etc....and just generally feeling so desperately weak all the time, and being so vulnerable, that i considered stopping tx about 4 weeks short of completion out of immense fear. i did e-mail the law firm that was mentioned in the e-mail,to try and get some more info but never heard back.....after much support and encouragment from some,and some butt kickin i decided to continue on and get to that much coveted 'finish line'....
it did occur to me at some point that yes, i had spent more than enough time researching these drugs (about a full year before tx-ing) to know that there were not only no garauntes,spl? but possible harmful side effects, but choose to treat with the knowledge and info i had...and clearly could read on every insert in every box of pegetron/ribavirine the possible sides...i especially LOVED the potential to become homicidal especially when compounded with menopause,(dead beavers) and would envision a class action suit of a different sort.....
beavers vs kimberley....ok ok all kidding aside....
i am happy to report that this girl....yes couchpotatoe, one of the ONLY three of us in the great white north treating/treated for hep c....have made it to the end and jogged/crawled through the ribbon at the finish line...after a brief repreive and vaction ( where on the very first day,i got severe sun poisoning and had to remain indoors for the duration during day light hours...opps...no one said interferon and riba don't mix with the sun in south/central america, oh and not to forget to mention the extreme dehydration i suffered...hahah) i am now home and beginning to feel better each day. sadly i must report that my hair, which had certainly thinned alot through tx....decided to REALLY start falling out AFTER tx....and the beat goes on...la de da de de, la de da de da....but i am in good spirits as usual and thrilled to not have to anticapate yet another monday injection. i will not be tested...PCR until october....so i have absolutely no clue as to whether or not i have responded and await patiently for good news at xmas.....
one other quick note...Health Canada announced yesterday that they had finally APPROVED pegasys for canadians and that it would be available almost immediatly....this is great news for those that will be treating!!!!
anyway all...take good care, stay well, stay cool
what a pleasure to hear from you,girl. Enjoy the riba free life.
actually, I kind of like been riba loaded; it boosts my latin temper. I too was burned in my Caribbean vacation a few years back, the first days I was there. The sun down south is brutal even without tx, sorry yours was hampered. I bet it was great getting away tho.
you be well, glad you are done and pray for your cure. keep us posted
I only know about this lawsuit from what I have read here. I really don't know if it has merit or not. Generally speaking, when a drug is presented to the FDA during the approval process, all data pertaining to the clinical trials that took place must be disclosed. It is not up to the FDA to ask if a specific side effect has occurred. If it can later be shown that damages have occurred due to a side effect known by the company but not disclosed to the FDA, then there may be a case. That is my understanding although I'm sure much legal maneuvering takes place. I certainly believe that any individual has the right to recover damages if a company can be shown to be knowingly at fault. Its like "hey, price the thing so we can fend off the lawsuits if they occur". Its all about $. Companies have no inherent, altruistic goals.
Type O neg is the universal donor. O positive can accept O neg blood. O neg can only accept O neg--not O pos. I've always thought that a huge % of O neg are infected. My Doc said that I probably kept getting re-infected every time I had blood trasfusions. B/c the blood pool for us O neg's is so small.
So, tallblond, that means an O neg is the bottom of the list since there will always be someone sicker who can use an O neg transplant-incl O positive.
That's why I chose tx. It was successful and altho i probably need a new liver, since mine failed before dx, I'm too healthy now. It seems as tho someone who beat the disease and made the life style changes to not just stay alive b/thrive would be a better canidate for a transplant than someone still infected and has not made the drastic life style changes. B/noooo...
So, just another reason to tx. that liver may not be waiting out there for you if you allow yourself to deteriorate to the pt of transplant.
Pharmaceutical industry bashing may be good and easy sport in America - but when the average cost of bringing a new drug to market has now reached $800,000,000 (figure from the Wall Street Journal a few days back), additional costs added to the system will be responded to by the phamaceutical companies with both price increases and cost-cutting measures.
And companies cannot push prices to whatever level they might choose. Pricing levels that try and reach too high will be met with resistance from the insurance companies that pay the majority of the reimbursment costs for the drug. Yes, the companies are temporarily given a monopoly via the drug patent system - but even monopolies cannot charge any price they might want - they would eventually price themselves right out of the market. Also, the market of interferon is not a pure monoply - there are two main players - Roche and Schering Plough. If one company decided to raise their prices, the other could hold steady or lower their price and go for market share. Look at how they are starting to do head-to-head studies right now in a fight over market share.
So, how else might companies respond to additonal costs if they can only raise their prices so high? The only other option is to cut costs in one or more areas. And basic research and development of new drugs is always an area of target. They begin to raise the bar higher on research and drop earlier or stop research before it begins on those drugs they deem potentially unprofitable. The end result being less drugs coming to market - and those that do will take longer to get there. Also, when lower-cost drugs eventually are allowed to be imported into the US, pharamcies will respond by lowering the prices they charge for their drugs - but also will respond with huge cost cutting - in research, personnel, investment in current and future production, etc. All of this will have a tremendous impact on the future of drug research, development and marketing.
Class-action lawsuits like this bring out the slimy ambulance chasing laywers and their minions who troll around looking for bodies to add to the lawsuit as they hope to line their own pockets via direct payment or on a commission basis.
I most especially despise that they choose to prey upon those who may be more vulnerable - either as a result of the illness itself or as a result of the medications they are currently on.
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