Aa
Trials, BI201335, Dr. Dieterich, etc.
FWIW, I was informed by Dr. Dieterich (Mount Sinai Hospital in New York) that the phase III BI201335 protease inhibitor trial is closed globally for recruiting new patients.
He also informed me that there would be new upcoming trials of other PIs at his hospital. However, when I asked to be put on the mailing list to receive timely notification of these trials, he told me "Not until you have an office visit ". Kinda hard to do when you're ten thousand miles away. I told him I would give him my username and password for accessing my test results at my local hospital in Buenos Aires. He hasn't replied.
This is the sort of bad faith awfulness that I have run up against every time I've tried to deal with the hepatologists in New York City. Some of you may remember how frustrated I got a year ago when I was back there and ended up leaving again without having spoken to anyone.
Does it seem reasonable that I should have to fly back to New York and pay $300 for a consultation, just to be put on a an email list for notification (just notification, not recruitment) of PI trials? It doesn't to me.
I'm at a real loss in figuriing out how to deal with this trials situation. And it seems that the clinicaloptions website is no longer posting the trial sites, so I can't contact any of them directly (like, anywhere but New York City!) when a new trial pops up there.
Sheesh!
Mike
He also informed me that there would be new upcoming trials of other PIs at his hospital. However, when I asked to be put on the mailing list to receive timely notification of these trials, he told me "Not until you have an office visit ". Kinda hard to do when you're ten thousand miles away. I told him I would give him my username and password for accessing my test results at my local hospital in Buenos Aires. He hasn't replied.
This is the sort of bad faith awfulness that I have run up against every time I've tried to deal with the hepatologists in New York City. Some of you may remember how frustrated I got a year ago when I was back there and ended up leaving again without having spoken to anyone.
Does it seem reasonable that I should have to fly back to New York and pay $300 for a consultation, just to be put on a an email list for notification (just notification, not recruitment) of PI trials? It doesn't to me.
I'm at a real loss in figuriing out how to deal with this trials situation. And it seems that the clinicaloptions website is no longer posting the trial sites, so I can't contact any of them directly (like, anywhere but New York City!) when a new trial pops up there.
Sheesh!
Mike
It is a drag, Mike! But it's not helping you to focus on why your options are bad or unreasonable. Just concentrate on what you are able to do, and what is most likely to yield a good trial for you.
Also, think of it from Deiterich's perspective: he likely has a lot of patients who want to get in on these trials. Some people aren't very serious about it, and the doctors probably have no way of assessing this until they meet you. Also, he probably needs to do certain tests to ascertain if you're even eligible, and perhaps he cannot use data from other hospitals.
I don't know Dr. Deiterich personally, but everything I've read and heard about him says he's a very good and caring doctor. So maybe he actually has a legitimate reason for insisting on an appointment before giving you info about the trials he's doing, and is not just trying to get you to leap through hoops.
I'm not saying you're wrong in your assessment; just that there may be other ways of interpreting the facts.
Also, think of it from Deiterich's perspective: he likely has a lot of patients who want to get in on these trials. Some people aren't very serious about it, and the doctors probably have no way of assessing this until they meet you. Also, he probably needs to do certain tests to ascertain if you're even eligible, and perhaps he cannot use data from other hospitals.
I don't know Dr. Deiterich personally, but everything I've read and heard about him says he's a very good and caring doctor. So maybe he actually has a legitimate reason for insisting on an appointment before giving you info about the trials he's doing, and is not just trying to get you to leap through hoops.
I'm not saying you're wrong in your assessment; just that there may be other ways of interpreting the facts.
I agree, they should give everybody a way to find out when trials become
available. at that hospital .To make that contingent upon an office visit is ridiculus when the trial and its criteria does not even exist yet.
My general physician explained to me that a lot of the trial hepatologists are about
collecting data and not primarily interested in your personal situation.
So you have to be very careful deciding between a physician that sees you as an individual and a physician who sees you as a statistic.
Just something I was told by another MD.
available. at that hospital .To make that contingent upon an office visit is ridiculus when the trial and its criteria does not even exist yet.
My general physician explained to me that a lot of the trial hepatologists are about
collecting data and not primarily interested in your personal situation.
So you have to be very careful deciding between a physician that sees you as an individual and a physician who sees you as a statistic.
Just something I was told by another MD.
I'm thinking that's pretty standard practice. I know you can't get into a trial at my treatment centre unless you're one of their patients and that requires at least an office visit for starters. If you're willing to put time into Dieterich, he's willing to put time in to you. I don't think he's in the business of starting a mailing list for trials. He wants to assess your situation first and then notify you of things that are pertinent. That would be my take on it. If you can manage it, Mike .. I'd go see him. At some point, you're going to have to decide to trust someone to some degree and I think Dieterich is a pretty safe bet.
If I have to be in New York, or in the U.S., just to find out when and where trials are going to be held, then my options are zilch re trials. There are almost none down here, and physically (that is, geographically) chasing after them in the U.S., when you're not already there, is obviously impossible.
I haven't given up completely, though. I'm still emailing hep MDs and liver centers anywhere I can find an email address for one. Surely there's someone left in the States willing to give me an even shake.
Or am I being naive?
Mike
I haven't given up completely, though. I'm still emailing hep MDs and liver centers anywhere I can find an email address for one. Surely there's someone left in the States willing to give me an even shake.
Or am I being naive?
Mike
Try these guys, Mike. This is a treatment, research and transplant center in based in San Francisco; Robert Gish is a world renowned hepatologist.
I treated with them and they are typically aggressive, out-of-the-box thinking, and provide cutting edge knowledge and service.
This is their website:
http://www.cpmc.org/liver/
And an e-mail for Dr Robert Gish:
***@****
My understanding is that they are amenable to consultation and have worked in long-distance management before. Read through the website, and give them a shout. Best to you,
Bill
I treated with them and they are typically aggressive, out-of-the-box thinking, and provide cutting edge knowledge and service.
This is their website:
http://www.cpmc.org/liver/
And an e-mail for Dr Robert Gish:
***@****
My understanding is that they are amenable to consultation and have worked in long-distance management before. Read through the website, and give them a shout. Best to you,
Bill
I think the in person visit is a legal requirement. Dr D is the most caring ethical doctor I have ever met and I am sure he would help out if he could.
A legal requirement to put me on their mailing list? Sounds ridiculous to me. Anyway, I don't know what more I can do at the moment than make my local hospital's test results available to them. If they won't accept that as an intro, then I'm stuck. I can't go flying around the world for consults when I don't even know if and when they'll be doing a trial.
I think the problem is that, what with the great trial results for the PIs, everyone wants to get into a trial, and the hep centers are swamped. naturally, they're gonna put screening procedures into place. It's my bad luck that I'm not on hand to comply.
But if I keep hunting I'll probably find what I'm looking for. It's really too bad that the gov isn't sticking to their previous procedures at clinicaltrials.gov any more.
But, them's the breaks. As the Argentines say, "Es lo que hay" (It's what there is).
M.
I think the problem is that, what with the great trial results for the PIs, everyone wants to get into a trial, and the hep centers are swamped. naturally, they're gonna put screening procedures into place. It's my bad luck that I'm not on hand to comply.
But if I keep hunting I'll probably find what I'm looking for. It's really too bad that the gov isn't sticking to their previous procedures at clinicaltrials.gov any more.
But, them's the breaks. As the Argentines say, "Es lo que hay" (It's what there is).
M.
I think the legal requirement is about giving medical advice to anyone that is not a patient that they have seen in the past year. The point I was trying to make is that Dr D is a great guy and would help anyone that he could. He would not insist that you come in if he didn't have to or think it necessary for some reason. It is possible that he has only limited openings for the trials and wants to personally evaluate every candidate for a trial. I can only guess at the reason.
Eric
Eric
I agree that it's extremely likely he has limited trial slots available and wants to personally evaluate candidates. My husband was told only a handful of slots for his trial were available where he is seen, and it makes sense that they would be allocated to patients the doctor has already seen.
If I have to be in New York, or in the U.S., just to find out when and where trials are going to be held, then my options are zilch re trials. There are almost none down here, and physically (that is, geographically) chasing after them in the U.S., when you're not already there, is obviously impossible.
I haven't given up completely, though. I'm still emailing hep MDs and liver centers anywhere I can find an email address for one. Surely there's someone left in the States willing to give me an even shake.
Or am I being naive? "
I think you might be being naive about finding a doctor who's willing to treat you without seeing you. You don't have to be in New York to find out about trials. Dieterich isn't asking you to stay there, he's asking you to come in for an appointment and let him assess you. Then he knows if there is any point at all to notifying you of trials and of which ones. Why waste his time and yours otherwise? Frankly, when you hook up with a Doc like Dieterich, you might just find out about other trials as well. I dunno, Mike. I'm thinking it's worth a visit. You don't trust the doctors where you are and you absolutely want care you can trust when you start treatment. Dieterich's among the very best, from what I can see.
I haven't given up completely, though. I'm still emailing hep MDs and liver centers anywhere I can find an email address for one. Surely there's someone left in the States willing to give me an even shake.
Or am I being naive? "
I think you might be being naive about finding a doctor who's willing to treat you without seeing you. You don't have to be in New York to find out about trials. Dieterich isn't asking you to stay there, he's asking you to come in for an appointment and let him assess you. Then he knows if there is any point at all to notifying you of trials and of which ones. Why waste his time and yours otherwise? Frankly, when you hook up with a Doc like Dieterich, you might just find out about other trials as well. I dunno, Mike. I'm thinking it's worth a visit. You don't trust the doctors where you are and you absolutely want care you can trust when you start treatment. Dieterich's among the very best, from what I can see.
I first encountered Dr. D when I was working with the AIDS community and he was lecturing at St. Vincent's hospital on a regular basis. I was seduced by his expertise and personality and became his patient at Cabrini hospital (failed therapy). Later I followed him to Mount Sinai. While Dr. D continued to express his animated brilliance when encountered I found an essential disconnect between his primary care availability, promises of including me in studies, and office staff. I was promised inclusion in such studies when they became available but was not contacted in 2-3 years although I attempted more than one email reminder to his N.P. As a health care professional myself I found 2 factors that were alarming: the office itself was poorly run (that may have improved as Mount Sinai as a whole has become more patient proactive on a business plane) with poor communication common. And the optimistic promise by Dr. D to include me in an effective study was not even anemically actualized. Today I have transferred my care to new hepatologist (also busy) with a NP who attends to all important communications within 48 hours. Also today I have cirrhosis with varices. Had I attended to my Hospice patients with the same disconnect to my promises as Dr. D had with me they would have sued me for negligence. Strong words that might elicit some defensiveness but it was my unfortunate experience (and I feel betrayal by one of the best when available). d
My experience with Dr D is the exact opposite. I have had nothing but the most outstanding care I have ever received.
My appointment to start the Telaprevir was on the record setting rainy day in April 2006. There was massive flooding and most trains and roads were shut down. I walked to the hospital at 6AM expecting to find no one there. On my arrival, I saw the research coordinator there before me! I asked how in the world did she get there. She replied "I knew you would get here if you had to row a boat, so I slept under my desk last night."
My appointment to start the Telaprevir was on the record setting rainy day in April 2006. There was massive flooding and most trains and roads were shut down. I walked to the hospital at 6AM expecting to find no one there. On my arrival, I saw the research coordinator there before me! I asked how in the world did she get there. She replied "I knew you would get here if you had to row a boat, so I slept under my desk last night."
We're not talking advice or treatment here, just info. If they put me on their new trials mailing list, then, when a trial I'm interested in comes up, I might fly back for a consult. But I'm sure not flying to New York in the winter in order to be put on a mailing list. That's ridiculous.
I think we need to slow down a little and take a look at reality again. There are a lot of trials and a lot of trial sites. I can go to any of them just as easily (or as dificultly) as going to New York.
New Yorkers always think that it's the center of the universe. It isn't.
Mike
I think we need to slow down a little and take a look at reality again. There are a lot of trials and a lot of trial sites. I can go to any of them just as easily (or as dificultly) as going to New York.
New Yorkers always think that it's the center of the universe. It isn't.
Mike
Okay, hon, if I get back to New York I'll give him a call and go see him. But 300 bucks is a lot of moolah for getting on a mailing list.
Personally, I think a lot of these big-shot hospitals are playing games now since they got the gov to take the site locations off the trials lists. Now they've got us all where they want us, begging to be let into their trials.
Fortunately, there are other places (U. Mich. in Ann Arbor, for one) that just post all their trials for anyone to see. I can do business with that. Secrets, pressures, one-up-manship, control games, and bzzz-bzzz turns me right off.
But, then, I always hated New York. I've even got an "I hate NY" T-shirt to prove it.
Mike
Personally, I think a lot of these big-shot hospitals are playing games now since they got the gov to take the site locations off the trials lists. Now they've got us all where they want us, begging to be let into their trials.
Fortunately, there are other places (U. Mich. in Ann Arbor, for one) that just post all their trials for anyone to see. I can do business with that. Secrets, pressures, one-up-manship, control games, and bzzz-bzzz turns me right off.
But, then, I always hated New York. I've even got an "I hate NY" T-shirt to prove it.
Mike
I'm very sorry to hear about your bad experience with Dr. Dieterich and those hospitals. What you say does not surprise me, though. These doctors who have become famous (and rich?) from the mediatized HIV and HCV epidemics are doing a tight-rope act between their position as a field leader and their obligations as a medical practitioner.
I won't say any more, as I have few positive feelings for the medical profession as a whole. As a friend of mine once said, doctors are the only people who are happy when the weather is bad.
Mike
I won't say any more, as I have few positive feelings for the medical profession as a whole. As a friend of mine once said, doctors are the only people who are happy when the weather is bad.
Mike
Somehow it was different with me. My hepatologist, Dr G. ,Craw Long/Emory in Atlanta offered me a place in several different trials, all of which I passed on. I decided on SOC/off label Alinia. Maybe willing paitients are harder to come by down here. jerry
Mike, Mike, Mike... I understand where your dislike of the med profession in general has come from but it seems to me you will have to leap over that hurdle if you really are serious about getting this particular treatment underway. The only people who are able to offer it to you are those said demon docs and the big pharma companies!
Yes, research makes money and yes, doctors make a good living, but there are some who genuinely care about helping people and I would suspect (or hope) they are the majority rather than the minority. You know it is usually the shareholders of a company that are pushing to make money, the researchers and medical staff are the ones that are really trying to help people! Those shareholders are more often that not, non-medical types like you and I who are looking to grow their money - I would not be so quick to blanket blame onto medical professionals in general.
In the perfect world all medical help and medication would be free for the patient but it's not that perfect world. It's highly imperfect and we need to be able to make it work for our advantage all the while trying to improve it.
Yes, research makes money and yes, doctors make a good living, but there are some who genuinely care about helping people and I would suspect (or hope) they are the majority rather than the minority. You know it is usually the shareholders of a company that are pushing to make money, the researchers and medical staff are the ones that are really trying to help people! Those shareholders are more often that not, non-medical types like you and I who are looking to grow their money - I would not be so quick to blanket blame onto medical professionals in general.
In the perfect world all medical help and medication would be free for the patient but it's not that perfect world. It's highly imperfect and we need to be able to make it work for our advantage all the while trying to improve it.
Well Mike .. you give me enough warning and I'll meet you in New York. Um.. better get my passport I guess .. new requirements now, Canadians need a passport to get into the U.S. And since you're that close in New York, might as well take a trip up to Canada .. eh? :)
Hi, Jerry. Your doc sounds great. I wouldn't mind flying up to Atlanta for that kind of respectful treatment. It pays to be somewhere they need you as much as you need them.
I'm tinkering very seriously with the Alinia idea. This trials run-around is starting to give me the willies. Like, one nurse for fifty trial patients? Signing waiver-of-liability forms? Commitment not to self-medicate when you're sick? And now this one won't take me because my hemoglobin's not bad enough yet? Oh-la-la!
I wonder if there's some way of getting hold of the Boceprevir formula. I've got a buddy working in a biochem lab...
M.
I'm tinkering very seriously with the Alinia idea. This trials run-around is starting to give me the willies. Like, one nurse for fifty trial patients? Signing waiver-of-liability forms? Commitment not to self-medicate when you're sick? And now this one won't take me because my hemoglobin's not bad enough yet? Oh-la-la!
I wonder if there's some way of getting hold of the Boceprevir formula. I've got a buddy working in a biochem lab...
M.
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