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Vertex VX-950/Telaprevir Phase 3 Trial Applicants
by mremeet, Jun 26, 2007 12:00AM
I spoke with another prove 1 trial participant last night and she told me an interesting story concerning many of the prove 3 participants currently enrolled at her trial center. She was seated in an area waiting for blood tests where many of the prove 3 trial participants were waiting to be seen as well. Without going into too much detail, after speaking to (and observing) several of these participants, she noticed that pretty much all of them appeared to be basically completely clueless when it came to their disease and its treatment (much less anything about VX950). One patient was even mentally retarded (and of course, not that there's anything wrong with that). It just seemed like there was a population of prove 3 participants that were exceptionally, uh...salt of the Earth-ish. And again, not that there's anything wrong with that.
This is in pretty sharp contrast to what we've seen from prove 1 and prove 2 participants. Most of the prove 1/2 lot I've encountered seem pretty savvy, involved, communicative and well informed. And when I was attempting to get myself recruited during the screening process, I took pains to demonstrate that I was fairly knowledgeable about HCV. I was very positive, proactive and eager to participate. I attempted to engage in detailed conversations with my doctor and study nurse to demonstrate that I was on the ball, well informed and would really be a "Johnny on the spot" during the trial. I spoke freely of research and internet support forums, and my doctor and study nurse seemed both impressed and pleased by this. I think they considered me a reliable patient (as I had hoped they would), and...I was!
BUT, remember this was for the recruitment of Prove 1, the first large scale long term VX-950 trial. Since that time a lot has transpired in terms of the trial, including a lot of disclosed information online concerning side effects (especially rash), risks, efficacy and some of the flaws of the trial and patient care. We know for an absolute fact that Vertex did not like this aspect of trial participant behavior (not that I blame them, entirely). They would very much like to keep a lid on what's happening during the trial, especially in regards to side effects. We know Vertex frequently contacted trial doctors and directed them to attempt to reel in any patients who might be online discussing the trial (mostly on this forum). It became quite a troublesome and contentious issue from their perspective, especially in regards to discussions about placebo detection, side effects, offstudy PCR's etc etc. Bottomline is that Vertex doesn't want anyone that's in the trial to go online and either get the whole skinny (as best as can be ascertained), nor to provide "the skinny" to anyone else.
And from the trial doctor's perspective, it can also be troublesome to deal with a patient who might know more than they should (as a consequence of learning "things" online). Those patients can pose difficult and troublesome questions and issues. Issues and questions that a doctor may not be able to answer or deal with effectively. The prospect of one or more of their patients going online and openly discussing how that doctor may be treating them, usually won't sit well with them. Especially since Vertex (their employer) will also be reading these same critiques (which again, Vertex doesn't like for reasons all their own). This is also why some trial doctors have gotten 'yelled at' by Vertex after one or more of their patients went online discussing details from the trial.
So, what does all of this have to do with the "salt of the earth" prove 3 participants observed in the waiting room mentioned above? I dunno, maybe nothing, the sample size is pretty small to derive definitive conclusions. But for my money, I'd about absolutely guarantee that either Vertex and/or the individual trial doctors have decided it's best to NOT recruit overly informed online busybodies (like myself and most of us here) for the remaining VX-950 trials. If you can find good, solid, reliable peasant stock who are likely to be compliant and simply take their meds properly everyday, but otherwise "don't know much 'bout no intafewon", or "Gee, I ain't got no intanet", then THOSE people are the most desirable recruits. They meet the physical inclusion criteria, they'll take their meds, do what they're told, not make waves, and NOT go online seeking more info (or offer any to anyone else). And NOT question their decisions or make waves of any variety.
Anyway, what's the point of all this? If you're looking into getting into phase 3 Telaprevir trials, don't try and impress the trial doctor or study nurse with what you know. DO NOT, repeat, DO NOT mention ANYTHING about the internet (god forbid medhelp!) or "you read this" or "you read that" or "this study says this" and "that study says that" etc etc. Keep your big fat mouth shut, and try and simply appear to be extremely cooperative, attentive and receptive to anything they say. Try and appear to be a simple person that's capable of following directions, but isn't too inquisitive and does not question his/her doctor's orders. Wearing dungarees and a plaid shirt might help too. Ok, maybe that's taking it too far, but you know what I mean ;-) They'll probably attempt to slyly ask you questions about what you know and whether or not you visit the internet - be ready for those questions and practice your best "Don't know much 'bout no inta-net" look, and man...make it believable!! They'll be suspicious and wary, so it's gotta be good. And for cripe's sake, never, EVER say a damned thing about mremeet or prettydamnedscared, or pln or happyhungry or dointime or ANYONE like that!! LOL
This is in pretty sharp contrast to what we've seen from prove 1 and prove 2 participants. Most of the prove 1/2 lot I've encountered seem pretty savvy, involved, communicative and well informed. And when I was attempting to get myself recruited during the screening process, I took pains to demonstrate that I was fairly knowledgeable about HCV. I was very positive, proactive and eager to participate. I attempted to engage in detailed conversations with my doctor and study nurse to demonstrate that I was on the ball, well informed and would really be a "Johnny on the spot" during the trial. I spoke freely of research and internet support forums, and my doctor and study nurse seemed both impressed and pleased by this. I think they considered me a reliable patient (as I had hoped they would), and...I was!
BUT, remember this was for the recruitment of Prove 1, the first large scale long term VX-950 trial. Since that time a lot has transpired in terms of the trial, including a lot of disclosed information online concerning side effects (especially rash), risks, efficacy and some of the flaws of the trial and patient care. We know for an absolute fact that Vertex did not like this aspect of trial participant behavior (not that I blame them, entirely). They would very much like to keep a lid on what's happening during the trial, especially in regards to side effects. We know Vertex frequently contacted trial doctors and directed them to attempt to reel in any patients who might be online discussing the trial (mostly on this forum). It became quite a troublesome and contentious issue from their perspective, especially in regards to discussions about placebo detection, side effects, offstudy PCR's etc etc. Bottomline is that Vertex doesn't want anyone that's in the trial to go online and either get the whole skinny (as best as can be ascertained), nor to provide "the skinny" to anyone else.
And from the trial doctor's perspective, it can also be troublesome to deal with a patient who might know more than they should (as a consequence of learning "things" online). Those patients can pose difficult and troublesome questions and issues. Issues and questions that a doctor may not be able to answer or deal with effectively. The prospect of one or more of their patients going online and openly discussing how that doctor may be treating them, usually won't sit well with them. Especially since Vertex (their employer) will also be reading these same critiques (which again, Vertex doesn't like for reasons all their own). This is also why some trial doctors have gotten 'yelled at' by Vertex after one or more of their patients went online discussing details from the trial.
So, what does all of this have to do with the "salt of the earth" prove 3 participants observed in the waiting room mentioned above? I dunno, maybe nothing, the sample size is pretty small to derive definitive conclusions. But for my money, I'd about absolutely guarantee that either Vertex and/or the individual trial doctors have decided it's best to NOT recruit overly informed online busybodies (like myself and most of us here) for the remaining VX-950 trials. If you can find good, solid, reliable peasant stock who are likely to be compliant and simply take their meds properly everyday, but otherwise "don't know much 'bout no intafewon", or "Gee, I ain't got no intanet", then THOSE people are the most desirable recruits. They meet the physical inclusion criteria, they'll take their meds, do what they're told, not make waves, and NOT go online seeking more info (or offer any to anyone else). And NOT question their decisions or make waves of any variety.
Anyway, what's the point of all this? If you're looking into getting into phase 3 Telaprevir trials, don't try and impress the trial doctor or study nurse with what you know. DO NOT, repeat, DO NOT mention ANYTHING about the internet (god forbid medhelp!) or "you read this" or "you read that" or "this study says this" and "that study says that" etc etc. Keep your big fat mouth shut, and try and simply appear to be extremely cooperative, attentive and receptive to anything they say. Try and appear to be a simple person that's capable of following directions, but isn't too inquisitive and does not question his/her doctor's orders. Wearing dungarees and a plaid shirt might help too. Ok, maybe that's taking it too far, but you know what I mean ;-) They'll probably attempt to slyly ask you questions about what you know and whether or not you visit the internet - be ready for those questions and practice your best "Don't know much 'bout no inta-net" look, and man...make it believable!! They'll be suspicious and wary, so it's gotta be good. And for cripe's sake, never, EVER say a damned thing about mremeet or prettydamnedscared, or pln or happyhungry or dointime or ANYONE like that!! LOL
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Your comments humored me just the right way. You are obviously not on interferon at this time, otherwise we may have our first standup HCV comedian.
I'm in the 8th week of the Prove 3 trial. I'll say Hi to Ned or Ted if I see them in the waiting room!
Susan
It is not a question of good guy, bad guy. It is a reality that sometimes the needs of the trial participants diverge from the objectives of Vertex. It is not negative to discuss this on the forum and try and help somebody figure out what is their best route to SVR. It is the best thing about the forum.
As far as mremeet's advice on how to play it for the best shot into the trials, it seems pretty savvy to me however he arrived at it. If it helps just one person get into a trial and get an SVR out of it then that's great.
The forum and the people who have the courage to tell it like it is, are a valuable resource in the fight against HCV. The irony is that all of them are probably as pro Vertex as I am, and yet Vertex itself has not quite learned how to use that resource rather than stifle it. If anything will get this drug to market and past the FDA with speed it will be the groundswell from the same people who are currently willing to speak up and ask questions.
dointime
As a college educated dental hygienist, who is in week 9 of Prove 3, I think this is a bunch of BS. I also know another woman who is in the Prove 3 trial at another facility...she is an RN. In fact, I doubt that anyone would consider any of the several Prove 3 participants that post on Medhelp to be clueless or mentally retarded.
Firstly, it's the treatment facility that provides Vertex with potential trial participants in the first place so I guess if they pick a bunch of "dummies" the credit for that should go to the facility.
Secondly, none of us in Prove 3 were treatment naive as you were in Prove 1 and 2. We have all be through it before and I'm sure we're much better educated than the typical treatment naive patient.
I have never gone to any hepatologist appt. without a list of questions. Good questions. I have done nothing but study this disease since the day I was diagnosed. So, if you think you're helping people who are trying to get into a trial, I think you should think again.
Differences of opinion are healthy: they make us understand our own position and can also influence us to change our mind and make a better decision.
We humans are subjective beings; no matter how hard we strive for scientific purity in our decision making, we always combine our emotions with any decision we make. A healthy disagreement with someone with another viewpoint can help us wade through the subjective influences and make a better decision.
I am pro Vertex and fully comply with the trial, but I agree with the other post that the goals of Vertex are not always in my best interest; I don't expect them to be.
All commercial public corporations are entities soley created to make money for their shareholders. That is their charter. That said, many employees of corporations are compassionate caring people. Unfortunately, they are all governed by a board that has only the share price in mind.
In the end, Vertex will probably extend my life and improve the quality of it by elininating the virus. For that, it is worth all the difficulty of participating in the trial.
Susan
Collage educated, business owner, failed 1st tx 2 1/2 yeasr go with miserable sx. I'm a Type A personality and in every consulation with my hepatologist at IU Medical Center, Dr. Paul Kwo, I ask cutting-edge questions that I learned mainly from here. He always appreciates my research, intelligence and treats me as an equal partner in the trial. Kwo is also very communiccative. I really trust and like he guy.
I've posted this here before, that when I joined the Prove 3 trial I signed a legal document, "Consent Agreement" that limits what I can and cannot say publically about the Trial. We use these all the time in my buiness called Non-Disclose Agreements (NDAs)
These legal documents are legally binding. I intend to keep coming here for everyone's support and to ask fair questions about the Trials. I also will stay within the boundaries of the agreement and will only discuss Trial information within the public domain.
I want to stay enrolled in this thing, get healed, contribute to the advancement of HCV tx and go on with my life without HCV.
Mike
i personally hate to see the messenger get shot at for reporting what he saw at the frontlines of his particular trial. and reporting his thoughts about the implications for the entire trial 3 battle. i personally didnt see any insult
to "the working man crowd"
i almost forgot though, contrary opinions do make the world go around.
susan 400
im absolutely thrilled and amazed to see your very controlled emotion as you approach this upcoming earth shaking event in your life. a decade or so
of struggle with a truly new chance, here and now.
i dont see how you can sleep.
From A Foot Soldier To
The Invincible Warrior
-- Jim
BTW - I hope you're doing well now that you've stopped treatment!
Back to the prove 3 crowd: First and foremost let me state plainly right up front that obviously I wasn't referring to you guys, nor did I intend to suggest you guys are stupid or unsophisticated or anything else. However, looking back on my post and re-reading it today, I can see where you might have reasonably taken offense by it, especially whilst knee deep in treatment where emotions run ragged. For that I deeply apologize, believe me I absolutely respect you guys and am pulling for you in every way all the way. I meant no offense to you or your efforts in any way - please believe that, because it's a plain fact. I mean c'mon guys, I'm one of you, I've walked in your shoes and continue to do so right now. Do you really think I hold you in disdain or think lightly of you? I don't!
Finally, I'll try and address most of the complaints/disagreements one by one as best I can:
Susan, again real sorry, I didn't mean to tick you off or imply you're a peasant in a flannel shirt and overalls. For all I know you're a rocket scientist wearing a mini-skirt, go-go boots and sportin' a big beehive hairdo. If so, that would be extremely magnificent. PUHH LEEZE FORGIVE ME VERTEX SISTA!!
dmhrdh - You ask if I think my suggestion will help those looking to get into a phase 3 trial: well, frankly, YES! I definitely think my advice will help them, that's why I said it. But again, I apologize if I upset you. I know you've got enough troubles dealing with the treatment without having some butt fungus irritate you with a post like this. Plus, the very last thing I'd every want to do is **** off a dental hygienist...especially my own.
web52 - I agree with you that it's a great thing for Vertex and the trial centers to recruit people without respect to race, creed, color, religion etc etc. And obviously they are required to by law (rightfully so). I wasn't suggesting otherwise, hopefully you didn't get the wrong impression based on what I said. Hope you're doing well and nearing your EOT in good spirits.
Orleans - I'm taking all this heat because this post was written primarily for you dude. Hope you're appreciating it! ;-)
Miked - Thanks for the info concerning your consent form, that's the first I've heard that it actually restricts your ability to speak freely about your trial experiences. There were no such restrictions in our Prove 1 consent form, nor do I believe in prove 2's consent form (although I haven't actually read that one myself). Does anyone have any idea at all why Vertex may have changed the consent form in this manner??? And yes, this is a rhetorical question. Miked is there any way you could quote the verbiage within the consent form which dictates the limitation on your "sharing of information"? Or is even that part restricted?
Also, you refer to the consent form as a legal document. For the record I doubt it's really legally binding in regards to your freedom of speech. I'm not a lawyer, but I would think for it to be truly legally binding you would have to have legal counsel there with you when you signed and you would have to be in a state of non-duress (having HCV and needing treatment would qualify you as "duress-ful" in my view). I very, very seriously doubt that Vertex could or would go after you legally for chatting about your trial experiences online (which obviously you seem to realize as demonstrated by your presence here).
jim quote: "Don't buy it at all. The majority of those treating HCV are clueless, so it's not suprising that the majority of the Prove3 trial partipants are as well."
Nah, that's an apples to oranges comparison. I agree with you that most people who do treat HCV using SOC are (relatively) clueless about their disease and its treatment. And I'd also even agree that most who enroll in most clinical trials are also relatively clueless in a similar manner (although I'd suspect a bit more sophistication on average). But in the specific case of a later phase VX950 trial, that comparison absolutely breaks down. The reason I say that is because VX950 is very famous within the *informed* HCV community. It's all the buzz, and rightfully so. When I enrolled in prove 1, it was still kinda sleepy and not as well known because there hadn't been any long term trials demonstrating what it could do yet. But even then, a line was forming and they were somewhat picky; I counted my lucky stars that I got in when I did (and I met the inclusion criteria perfectly). And when I enrolled I wasn't a naive patient who knew nothing about treatment. I was pretty well informed and did everything in my power to get into the trial. And I know there were many others just like me who did the same. So my point is is that a significant percentage of those trying to gain access to prove 1 were not your typical "clueless" hep C patients - far from it. (and that's why your comparison above is not completely true).
Now, "2 proves" later "people" are practically knocking down the doors to get in. With "people" being defined as those in the know, NOT people who "don't know much 'bout no HCV" who just stumbled upon the trial by sheer happenstance. The line wraps around the building 3 times over. And again, the line is comprised mostly of people who know what telaprevir is and have been brought out of the woodwork *specifically* because they are sophisticated and because they are well informed. So what that means is that the pool of available/possible participants are comprised of a smaller number of unsophisticated patients who just happen to be in the right place at the right time (i.e. already under the care of a study doctor and/or at a research hospital), OR a much more numerous HORDE of informed/sophisticated patients trying to knock the walls down to get in. So it would be surprising to find that the general trial participant population was comprised of the same percentage of "HCV clueless" patients as might be found in an average cross section of those treating with SOC alone (outside of a trial environment). In fact, if the sophistication of the later phase telaprevir trial populace was similar to SOC patients (on average), within the context of the hordes of sophisticated patients trying to get in, you'd have to wonder - why is that??? Especially when you take into account that prove 3 includes non-naive patients who've been through this treatment before (i.e. the ultimate HCV sophisticates). Can't speak for anyone else, by in my view Sherlock Holmes' services are not required.
jimquote: "Those you find here -- Prove 2 or 3 (like Susan) -- tend to be more knowledgeable, as just the fact of being here suggests they are looking for answers outside their doctor's office."
Absolutely, and that ties directly into what I've stated above. Nothing I said in my previous statement suggests otherwise either.
jimquote: "Further, for a company like VX-950 to someone influence their trial sites to screen out "informed" patients, would probably set them up for tremendously negative publicity (not to mention lawsuits)."
I agree and I don't believe that Vertex is directly influencing the selection of each individual patient - they're not allowed to, and I'm sure they're adhering to that rule (technically, that is). But effectively, they are ABSOLUTELY influencing and governing the running of these trials, make NO mistake about that. They monitor this board (and others). On many occasions they've contacted trial doctors and have directed them to silence or otherwise influence patients on this board (and others). They've even expressed concerns over blogs and other sources of info. And although I haven't seen conclusive evidence that Vertex is upset or concerned about some of what we've been saying here about telaprevir ending up on stock investor websites - I'm gonna go ahead and go out on a limb and GUESS that they probably aren't too keen on that either.
So how does Vertex's clear and well demonstrated desire for trial secrecy and patient silence translate into influencing individual trial participant selection without Vertex actually *technically* violating the rules of independent selection?? Easy - first, remember that we're up to prove 3 now and moving into phase 3 (prove 1/2/3 are phase 2 trials). Most of the study centers that are running prove 3 ran (or are still running) prove 1 (prove 2 was in Europe only). That means that most of the same trial doctors that were used previously for prove 1/2/3 will also be used for phase 3. Which of course means those doctors have already gone through the trial process with telaprevir and Vertex. Which means many of those doctors have already received the phone calls and emails from vertex admonishing/warning them about patient x making statement y about telaprevir on forum z. And even if a particular trial doctor had no patients who ended up on the Vertex/medhelp radar, believe me they still got the word about controlling potential blabbermouth patients. Did you know that some of the prove 1 folks who frequent here (who shall remain nameless ;-) were actually specifically mentioned (by their online monikers) and discussed amongst doctors at some of the liver conferences?? Hepatalogists around the world are reading what we say here about our unvarnished/unfiltered experiences with telaprevir. Clearly, Vertex would like to control the output of that information (especially if it's bad), and that fact is instantly demonstrated by the revised consent form described by miked above dictating a vow of silence from the participants.
And remember that these doctors are being paid by Vertex. Also, as research doctors their credibility is on the line - a good research doctor knows how to select and manage patients so that their adherence, compliance and completion rate is as high as it can be. Plus, sometimes if a negative experience concerning the trial is voiced online, it may be a bad reflection not just on Vertex, but on the trial doctor him/herself. This could pose an embarrassment to the trial doctor and make him/her look bad - especially in the eyes of Vertex. Which could mean that doctor will not be hired again to run a later phase trial, which once again could remove a copious source of significant income and threaten that doctor's credibility/standing within the research community. So as you can see, it's not only in the best interest of Vertex to have patients that are likely to keep their mouths shut, it's also in the best interest of the trial doctors.
In summary, all of these factors are how Vertex *effectively* can influence trial participant selection without directly (technically) violating the selection criteria rules.
jimquote: "Personally, I've found that presenting myself as an informed patient doesn't necessarily make me the most popular patient in every doctor's office, but it has given me what I consider the best medical care that particular doctor might offer, since to a certai extent they know I'm looking over their shoulders just a little."
Absolutely, I agree 100% here, but only within the context as a patient seeking SOC. I'd want to impress upon my doctor that I plan on being a participant in the managment of my care and that I want to work with him in directing my treatment (possibly including offlabel high dosage stuff etc). I'd think of myself as being in the driver's seat and I would behave accordingly. If I didn't like what I was hearing my doctor, I'd simply go elsewhere. But from the perspective of someone trying to get into a late phase teleprevir trial (which is *very* competitive), I most certainly would not go into the interview/screening process with that same sense of "bravado" (for lack of a better description). I'd consider myself a beggar and not a chooser (i.e. the exact opposite of what I would consider myself as an SOC patient). And I especially most certainly would not be "Joe proactive/assertive" during the screening process if I were in the vulnerable position of F3, advancing age and declining health. I'd tell 'em what they'd want to hear, simple as that. (and yes, I presume to know what "they want to hear" at this point in my treatment)
Anyway sorry to drone on again everyone. My only point was for this post to be a "message in a bottle" for future prospective phase 3 participants (like orleans). My advice is to keep it simple and don't attempt to impress anyone during your screening process by blabbing about what you learned on the internet. Give off the impression that you're compliant and not terribly inquisitive and that you'll follow instructions to the letter. Be on time every time, and do everything they say without complaint. Don't make waves of any variety, and don't give the impression in any way that you'll be likely to do so in the future.
That's it! Pretty simple I think, and if you disagree then by all means feel free to discuss the finer points of the Drusano report and what mremeet said about his awful rash on the most helpful medhelp forum! LOL
Be well!
I was an executive in a software company and dealt with non disclosures all the time as well as lots of lawyers. For a non disclosure to be legally binding it has to have: A statement that you, the signer, are about to receive proprietary information that is valuable to the discloser and that harm would be done if it were made public; it is incumbent on the discloser to point out every piece of information that is proprietary and make sure that it is distinct from the informatin being disclosed that is public. The trial admins would have to tell you every time they were talking about proprietary information for it to be legally binding.
That said, I personally don't want to disclose anything that would hurt the trial in any way, such as trying to discover the placebo or what arm I am in. I also am grateful for being accepted in the trial and will do my best to stay within the protocol.
I do think the CEO of Vertex made an error in judgement disclosing information about the trial while it is underway. How do the people in arm C feel when they here the CEO say that it is not the most effective treatment compared to triple therapy.
By they way, I agree with your attempt to help people get into the trial and wonder why anyone here thinks you are talking about them. I certainly never took it as criticism of me and I am in prove 3.
Again, I've frequented this board for nearly 3 years. It has been an excellent source for accurate and timely inormation and for support when I;ve asked for it.
As I go through the Prove 3 study I'll ask about and share information that is in the public domain but I'm not going to risk pixxing off Vertex or my Doctor and being pulled from the study.
Like last week I itched like I've never itched before and there were many suggestions that ennded up helping. Several weeks ago I posted about how my wife and best friend just don't get what I'm going through....many people had the same experience and really helped me get my head around it.
With Prove 3, I just don't want to take anymore risks than I'm already taking.
I hope people will still talk to me here?!
Mike
I guess I just shoot my mouth off too easily, personality quirk of mine, maybe I'll have to temper that if I'm lucky enough to get into a good trial...personally, I'm grateful for your candid disclosures here, but I can fully understand anyone's reluctance....what my real take away is, how articulate and thorough you guys are in explaining your experiences, that gives me hope that maybe I won't be hit too hard in that regard...I'd like to save what little powers of cognition I have left... your posts are really impressive, thanks for them...
http://clinicaltrials.gov/