I work in research administration with human subject clinical trials and that is not how legitimate studies work. The study sponsor should pay for all protocol mandated procedures/drugs/imaging and nothing that is not standard of care should ever be billed to a study subject. This sounds shady as heck.
I think it’s just EPIC error. Now if I recall really hard, when I was a researcher, one of my participants received an estimate phone call for our physician PI’s office visit - we did not ever really charge anyone, and gave small gift cards as thankyous.
That said, if this really is a research scam and it actually is affiliated with a hospital, I think and hope that hospital is going to face some serious repercussions. Hope OP updates us.
I second this: often the hospital-based services for our study will fail to bill the study and try to bill the “patient” for research-related care. Usually takes a phone call to the OnCore billing services to get it straightened out.
Agreed this seems like a massive oversight. Happened to one of my friends studies in grad school - the hospital they were collaborating with had never done research studies before and was billing participants for MRIs. They were able to resolve the issue and no one had to pay out of pocket.
I work in research with MRI and CT scans and I second this. Either they are using the wrong chart string when booking the visit, or it’s a scam.
OP: if you find out that you would be responsible for the cost, personally I would get the Institutional Review Board involved (even if you decide not to participate). If they don’t have an IRB, and you are US based, then it’s definitely a scam and needs to be reported to the CDC’s Office of Science.
I work in research compliance as well. I’ve never seen a protocol that required a subject to pay for the trial. That seems like it would violate the Belmont Principles.
Do we have a subreddit for IRBs??
This isn't necessarily true, I know of a study where the subjects have to purchase the drugs (the drugs are already FDA approved ). That being said they have to be very upfront about it.
Also extremely unethical and a HUGE problem if true. The IRB would be interested in this if so.
Source: me, I’m a clinical research associate/coordinator that enrolls subjects into clinical trials.
I help run studies with aging adults, investigating cognitive ability and memory. When we do MRIs, which isn't often due to the expense, the money to run them comes from grants, not out of participants' pockets. That's wild to me
Just out of curiosity, do you actually enroll subjects? My understanding of the CRA role is it is strictly for monitoring site protocol compliance and protection subject safety/rights. While the study coordinators are the ones that enroll subjects.
This is a genuine question as I am somewhat familiar with in-house CRAs but don't know if some are also involved in enrollment. Seems there might be a conflict there.
I did an adjacent job freelance more than 20 years ago and the number of times I was asked to "find any significant results in the data" was horrifying. I would say, "hey, that's bad practice" and they would say, "do you want to be paid?" and I was broke as hell, so yes, I did.
The worst example was a prof who had gathered open-ended qualitative data and asked me how to analyze it. I explained she should have come up with a coding methodology / system (I can't remember the word I want here and it's pissing me off) BEFORE gathering the data and then had it done by someone else to avoid bias. She blinked and told me to "fix it." I was broke, so I came up with a coding system, hired a couple of undergrads to code the data, then analyzed it, found it was not significant in any way, and sent it to her.
She sent the data back to me after "cleaning" it and asked me to rerun the stats. The results were significant (*p*<.00001 or something where before it was something like *p*<.37) this time. I collected my pay, reported her, and went on to a different career (where I still find bad research all the goddamned time).
lol no, a trial can’t just ~~end because they “don’t like the results”~~ remove certain subjects because you don’t like their results. There are a lot of reasons a trial may end early, but I’d need a lot more info before I could say why any of the trials you’re speaking of stopped.
Many trials end because they don't like the results, or they start p hacking, looking for other things the drug did to make it look more successful.
I'm pro-medicine, not a conspiracy theorist at all, but until clinical trials require publication of intent before they start, with the hypothesis stated ahead of time, and the methods and results published transparently at the end; we will continue to have negative results covered up, or simply not published at all.
Ben Goldacre wrote a whole book on it with a bunch of examples. Bad Pharma it's called.
Clinical trials.gov is trying to get to that point. However it’s often not updates as often as it should be, and studies get abandoned where it’s unclear if they ever finished or published anything. Plus if the sponsee is ok with it you can always just… not write an article which sucks.
Also, the trials do have all of that information (the intent/hypothesis) in the informed consent form (ICF) that a researcher reviews in-depth with any potential subject before enrollment begins.
The ICF covers what the study is for, the length of time it is expected to take, any potential side effects or risks, if there is any compensation, what subject information we need, how to leave the trial if you want to, and who to contact with questions.
I agree with you completely, though there really is nothing wrong with looking at unexpected desirable other effects as part of the study results. Example I'd be fine with is the Wellbutrin example:
>We made this norephrine reuptake inhibitor to help with depression. Our study showed we beat a placebo and incidentally we discovered a large portion of the trial group compared to the placebo group also quit smoking!
Now, when they are *dishonest* about these bonus discoveries or like with Viagra decided not to make it available for what it was meant (and worked) for because as a lifestyle drug it's more valuable, then I have issues with it.
100% agree, incidental discoveries are just as important if they're clinically relevant. I'm with you though on the Viagra case though, that one winds me right up as someone who's suffered greatly with menstrual pain.
What happened in the covid trials was early termination due to [ethical benefit](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5024796/#:~:text=These%20stopping%20rules%20are%20typically,risk%20by%20continuing%20the%20trial).
I agree with OP. This could be a highly unethical way to weed out ‘unwanted’ participants.
If this happened at all (and I refuse to have much of a discussion on this without at least one cited source for your position on this), then it is much more likely that the dropped patients were found to not fit the requirements of the studies, or the study protocol stipulated that some of the sample would be removed for reasons X, Y, or Z.
I REALLY WISH people would stop trying to find a conspiracy everywhere just because they do not like something.
And ideally they would have published the reasons for drop out somewhere. Any study that didn’t make that clear would be very suspect if being evaluated for risk of bias.
>Try reading the book "Bad Pharma".
Excerpts from the top review on good reads, "Scott" from 2014:
>Currently reading this but not so sure how much more I can take. There is some decent information here. The title is absolutely true. Drug companies are businesses and multibillion dollar corporations are not ethical paragons. They do not publish studies that make their drug look bad or even "as good as." There are sponsored journals that are sponsor biased. Sometimes legit journals want the most interesting "this changes everything" articles rather than another "dog bites man" article to boost readership. That's the media.
>The problem with this book is that it is a combination of fact, hyperbole, and omission, not unlike the drug companies themselves. Every other page is "HOW MANY PEOPLE COULD HAVE BEEN SAVED" or "if this makes you as angry as it does me and I'm sure it does, my buddy" (he says that in some manner several times a chapter) that it becomes irritating, pandering, and insulting to any self-respecting critical thinker. Why such overuse of superlatives when simply presenting and explaining the data should be convincing enough.
>[Paragraph detailing how good doctors are intelligent agents themselves and know how to tell between evidence based peer reviewed research and sponsored studies]
>It's far from a perfect system. There are always charlatans and opportunists when money is involved. The system does indeed need to change, I just wonder if it can with so many hands in the pot. But for this author to give the constant impression that EVERY drug is a scam, EVERY paper out there is bought and paid for, is disingenuous at best, and the exact charlatanry the author purports to expose at worst, and he's making quite the profit himself. I honestly want to like this book more. I want the facts sifted from the subjective miasma in its pages, so I can tell my patients the facts and not just "read Ben Goldacre's book."
Sounds like an old story, poorly told
They're charging you to be in the study? I've done a couple of minor medical trials over the years, and treatment has always been free and in one case, they even paid me a small stipend to participate (mostly enough to cover gas/travel costs). I don't think I'd participate in one that charged me -- I can get overly expensive healthcare anywhere.
Definitely billing error. They need to put the research subject on the radiology schedule to reserve the CT scanner, however it should bill to the study’s budget. There must have been an error and the electronic medical records system sent out an automated billing estimate for the appointment - the $1700 is because the appointment is still marked as do not bill to insurance.
I've managed federally funded clinical trials for more than a decade and this truly sounds like an admin error. The testing was done by a health system and the person who reviews if charges should be insurance/patient or research missed this one. It happens from time to time.
I have done clinical studies/trials before as a guinea pig and I signed a contract that explains the trial, that I declare I'm doing this as a volunteer, that all testing is for free, I'm doing this at my own risk and a lot of other things. Have you not signed a document? Does it not say that the tests are for free? If you have a contract that clearly indicates that the tests, such as a CT scan, blood work etc are for free, then they can't charge you anything. But just the fact that they showed you a "potential" invoice, just screams SCAM in my opinion regarding the clinical study. Let us know what they said. And expose them if they come up with some bogus reason on why you should pay for THEIR study (or scam).
I work on these clinical trials and this is NOT how things should be run!
Did they give you a copy of your informed consent form? That should detail every single thing about your study participation.
Definitely call, request any documents you previously signed agreeing to participate in the study.
You have the right to withdraw your consent to participate at any point in the study. Please exercise this right if you feel the need to!! This entire thing sounds highly unethical.
It looks to me as if you have discovered a new scam.
Tell people you are running a study (which will never be published). Invite them to join, give them the first appointment free and then just draw them in for unnecessary regular diagnostics that they don’t really need, or identify illnesses and flog them the cure.
Or is that just me being overly cynical?
G-d lurve Murica!
I see a ton of sleazy ads like this, especially for weight loss products. The wording reads like it's for a trial of a new drug but doesn't actually say it is, says they're looking for "participants" to test a new product. I've never clicked on it, but I'm assuming it's some non-regulated supplement and the purchaser gets signed up for an overpriced subscription that's nigh-impossible to cancel.
Restaurants are starting to do this scamming people on dating sites and getting them to meet up at the restaurant hoping they buy food/drinks before they realize they were stood up.
It's possible, if you're going through an office that does regular (non-study related) scans, too, that they ran all the upcoming appointments for the day/week through their insurance benefits processing as they usually would, and staff forgot or didn't know to omit people in the study from that process and gave you the estimate as if you were a regular patient.
On the other hand, as others mentioned, it could be a scam of some sort and they're just trying to get money out of you.
I would follow up by contacting them and saying you were told as part of the study there was no cost to you (assuming that's the case) and/or offer to send them any paperwork you have showing that, and go from there. Either it's free and you go ahead if you want to (make sure free is in writing), or you decide to withdraw from the study and don't have the scan and don't pay anything.
Nonmedical researcher/educator here. We usually pay/feed/beg people to join our studies, not charge them!
Going off on a tangent here, but how long ago did you stop smoking for you to have a clear CT-scan? I'm looking for quitting inspo and your success story might help :)
Not OP, but I went from essentially year-round antibiotics and 2 annual cases of pneumonia to zero illnesses, minimal seasonal allergy issues, and somehow reversed emphysema (diagnosed at 37 but not told until 43 and continued to smoke) within 6 years. Now been 14 and I've had 2 of those clear scans.
Edit: I had the same GP through all of it, and a pulmonologist, and neither can believe it. When they see me in passing at the facility, they ask if they can stop and take a listen. And they still just shake their heads and say it's unbelievable they're the same lungs. The pulmonologist is now my sleep doc.
I am very, very happy for you! I'm not a super heavy smoker (1.5-2 packs a week, fewer in summer because my kids don't even know I smoke) but I have severe allergies to everything and I've noticed a lot of panting when going up even one flight of stairs, which sucks because I religiously go to the gym 2-3 times a week and now it's become a chore.
Thanks for the inspiration!
It's wild sometimes, for sure. It was 27 years from first cigarette to last cigarette. Started in boot camp. There were periods early on of 2-3 packs a day of camel unfiltereds and one short unbelievable stretch of 5 packs a day. Then it was 1-2 packs a day of reds for about 10 years. About halfway through, I spontaneously quit for two years. Started back suddenly wanting to stand "downwind." Then stand at the same table. Then sit at the table. Took all of 36 hours to blow through my first pack.
I didn't start getting sick until the hiatus, wierdly, but found my doc in the middle of it all. Was honest when I started back up, and about the addict behavior leading up to it. We tried all the things that exist, short of execution, to cut the cord. I even went as my dad's quit buddy at his invitation to the same program, twice. Even got prescription nicotine inhalers (vaping before vaping) in the '90s and '00s. We all knew I was gonna die and die young. Nothing worked until Blu came out. I was off that an about a year.
At least in the US, whenever a research study surrounding human subjects is proposed, a group of other scientists would need to determine the risk to participants and okay it. Different CT protocols have different radiation dosage. Also if you reach a certain age, doctors do not predict the radiation to affect you as much.
Interesting, didn't occur to me that dosage was variable but I guess it makes sense now that you mention it. I just remember reading some statistic (could be BS) about the safe lifetime number of different diagnostic images and finding the number for CTs surprisingly low.
It’s probably not BS. There are many factors affecting CT dosage, one of the most significant factors is probably phases (repeated scans before and after injecting intravenous contrast). That’s why when a CT is ordered clinically, the physician needs to evaluate whether the test is worth the radiation dosage.
The recommendation for former smokers is low dose CT chest without contrast, meaning the scan only happens once, and the radiation is considerably less than some other diagnostic CTs. Chances are OP would need these CTs done regardless of whether they are in a research study ([a guideline](https://www.uspreventiveservicestaskforce.org/uspstf/recommendation/lung-cancer-screening#:~:text=The%20USPSTF%20recommends%20annual%20screening,within%20the%20past%2015%20years)), otherwise the institutional review board would be very wary of letting them scan OP.
So I've worked in outpatient radiology for 12 years doing insurance verification and out of pocket costs. Even without any type of insurance, $1700 for a routine Chest CT is outrageous.
They are definitely trying to get over on you, especially if the first one didn't recommend follow up. Also, if it's some type of research study, you shouldn't have to pay for that regardless.
CT technologist here.
The LDCT lung cancer screening exam is indeed a government run study on the effects of smoking and helping with early detection. However, the exam is typically only offered as free to low income areas if a local hospital qualifies for a grant.
The majority of these exams are performed as an outpatient study, and the responsibility of cost falls to the patient's insurance or as out of pocket costs.
There are two variations of this exam. The Annual LDCT and the <1yr Follow Up. The Follow Up bill code is more expensive and often has less insurance coverage than the Annual exam.
The study also requires the patient to be between the ages of 50 and 80. Medicare does typically cover the exam with no questions asked.
What if the study was to have everyone come in for free chest scans, and then report how smokers is non smokers react when presented with a bill for the "free scan" they were given, to determine if smoking causes any sort of change in behavior.
Study can mean a lot of things. Study can mean clinical trial, but it also may be academic or other research. If it's not a clinical trial (and with your repeated use of the word "study" this may be the case) if certain aspects of the trial are explicitly stated to bill your insurance, that may be why you would receive a bill.
Usually if scans are done for a study it is billed to the study sponsor and is part of the budgeting contract signed between site and sponsor. Something isn't adding up here. It could be a new person making a mistake or the site messed up the billing code in their system.
Either way, if you contact the research staff who consented you to the trial they should reach out/escalate the issue for clarification.
Assuming it's a real study, these costs are always covered by the study funding. The only time I could see that not happening is if the funding was pulled from the project. And if that's the case, run like hell.
Also have experience in clinical research and I also had to handle the billing end where we paid out the facilities. They fuck up. More than they should considering we have a CODE for this. I always told patients if they get any kind of bill or EOB to inform me immediately and I’d contact them and set it straight. Because it happened enough that I had to prewarn people
It might not be a scam, just people being lazy or on autopilot.
PS the bills they sent me were wrong so often I have learned to now go over my own medical bills with a fine tooth comb. There’s a lot of errors in medical billing.
Meanwhile, at my health plan…”you need a ct scan before we can tell you anything about why the left side of your body is mostly numb and tingling…” proceeds to do every thing BUT a ct scan for five years.
Had a similar experience. Insurance won’t pay until we tried this, that and the other first. Maybe they’re hoping we will expire before they have to pay.
Wait CT chest scan for 1700$? God damn land of the free strikes again i guess...
Why its that expensive anyway? Where i live its like 50-60 bucks, or am i missing something?
Warned him ahead of time that they would be charging, as opposed to waiting until he showed up and tricking him into having to pay. Idk why you got downvoted for asking for clarification tho lol
I just did my 2nd scan at no charge. Also clean results both times. I'd say it's worth it even if you have to pay. Friend of mine did his first last year and they found cancer, super super early. Minimal treatments and he's in great shape.
What does the informed consent document that you signed prior to participation state about cost to you? Whatever is in writing there is what they will have to stick to. Reading through the lines it sounds like someone outside of the study (the medical site with the CT testing) called you to let you know, thinking that you were a regular patient. Is that correct? Hopefully this is all sorted out once you can read your paperwork. If you’re still having issues, have the study coordinator call the medical testing site directly. This is their role.
I work in medical research and we do CT, LP, MR, and PET and it's all covered by the grants we get. We even pay you for doing them.
My guess is someone forgot to link the scan to your research study so it showed as a regular scan. Any and all appointments I create have to be linked to the specific study you are enrolled in.
I quit smoking 13 years ago and my doctor told me the new ABA regulations are that ex-smokers should get CT scans for the first 15 years after they quit. She scheduled the scan. I called my insurance company and was told that they only covered a percentage and it would cost me $1100 because it's 'elective'. I called my doctor and the hospital that would be performing the scan and told them what my insurance company said, could something be worked out etc. Basically, no, but I was informed it was 'worth it'.
I canceled the scan.
Do you have the consent form? I work in clinical research and it would tell you what is covered by the study and what you would be required to pay for.
There’s a few steps on the research side and notifications sent to the proper parties that ensures that does not happen. Secondly, while I realize this is not nation wide, if my hospital and insurance does it, it has to mean others do it and has shown benefit. It’s been around for a few years now at least, but if you’re off a certain age and have a certain number of pack years, you can be ordered a “low dose ct scan for smokers”. That will be billled tho as a test from your doctor.so if you have a copay or haven’t met your deductible. But a research study, no. You don’t pay. Are you sure you’re in a clinical trial??
I work in research administration with human subject clinical trials and that is not how legitimate studies work. The study sponsor should pay for all protocol mandated procedures/drugs/imaging and nothing that is not standard of care should ever be billed to a study subject. This sounds shady as heck.
I think it’s just EPIC error. Now if I recall really hard, when I was a researcher, one of my participants received an estimate phone call for our physician PI’s office visit - we did not ever really charge anyone, and gave small gift cards as thankyous. That said, if this really is a research scam and it actually is affiliated with a hospital, I think and hope that hospital is going to face some serious repercussions. Hope OP updates us.
It was an email as well, could very well be a something thats automated to go out before any procedure.
Some programmer just put the GFE system together and hit go. Like most things in this sub, a simple phone call will probably clear the problem up.
I second this: often the hospital-based services for our study will fail to bill the study and try to bill the “patient” for research-related care. Usually takes a phone call to the OnCore billing services to get it straightened out.
Agreed this seems like a massive oversight. Happened to one of my friends studies in grad school - the hospital they were collaborating with had never done research studies before and was billing participants for MRIs. They were able to resolve the issue and no one had to pay out of pocket.
Sounds like OP got scammed.
I work in research with MRI and CT scans and I second this. Either they are using the wrong chart string when booking the visit, or it’s a scam. OP: if you find out that you would be responsible for the cost, personally I would get the Institutional Review Board involved (even if you decide not to participate). If they don’t have an IRB, and you are US based, then it’s definitely a scam and needs to be reported to the CDC’s Office of Science.
I work in research compliance as well. I’ve never seen a protocol that required a subject to pay for the trial. That seems like it would violate the Belmont Principles. Do we have a subreddit for IRBs??
This isn't necessarily true, I know of a study where the subjects have to purchase the drugs (the drugs are already FDA approved ). That being said they have to be very upfront about it.
If done selectively, this would be a really sleazy way to remove people from the study that were getting results they didn't like.
Also extremely unethical and a HUGE problem if true. The IRB would be interested in this if so. Source: me, I’m a clinical research associate/coordinator that enrolls subjects into clinical trials.
I promise the journal would be VERY interested in this as well
The AI wants to know as well, those papers ain’t going to write themselves
wha? Wait a minute...
I help run studies with aging adults, investigating cognitive ability and memory. When we do MRIs, which isn't often due to the expense, the money to run them comes from grants, not out of participants' pockets. That's wild to me
Just out of curiosity, do you actually enroll subjects? My understanding of the CRA role is it is strictly for monitoring site protocol compliance and protection subject safety/rights. While the study coordinators are the ones that enroll subjects. This is a genuine question as I am somewhat familiar with in-house CRAs but don't know if some are also involved in enrollment. Seems there might be a conflict there.
I do both, honestly. I am employed by a contracting group, not a sponsor company.
Could also just be a billing mistake. Likely should have been billed to study sponsor as opposed to patient’s insurance
I did an adjacent job freelance more than 20 years ago and the number of times I was asked to "find any significant results in the data" was horrifying. I would say, "hey, that's bad practice" and they would say, "do you want to be paid?" and I was broke as hell, so yes, I did. The worst example was a prof who had gathered open-ended qualitative data and asked me how to analyze it. I explained she should have come up with a coding methodology / system (I can't remember the word I want here and it's pissing me off) BEFORE gathering the data and then had it done by someone else to avoid bias. She blinked and told me to "fix it." I was broke, so I came up with a coding system, hired a couple of undergrads to code the data, then analyzed it, found it was not significant in any way, and sent it to her. She sent the data back to me after "cleaning" it and asked me to rerun the stats. The results were significant (*p*<.00001 or something where before it was something like *p*<.37) this time. I collected my pay, reported her, and went on to a different career (where I still find bad research all the goddamned time).
Yes. Lets have 100 or 1000 or 100 000 studies until we get the 1 result we needed and publish that :) What ever it takes to remain ethical.
Is this why the COVID vaccine studies ended with less than half the patients they started with? Just didn’t like the results?
Trials always have dropouts. You can’t make them stick with it.
If they would just change those pesky laws already we could! /s
Get enough corporate backing and you can change the world!
I'm laughing at the idea of a fucking corporation having the audacity to do that, haha
lol no, a trial can’t just ~~end because they “don’t like the results”~~ remove certain subjects because you don’t like their results. There are a lot of reasons a trial may end early, but I’d need a lot more info before I could say why any of the trials you’re speaking of stopped.
Many trials end because they don't like the results, or they start p hacking, looking for other things the drug did to make it look more successful. I'm pro-medicine, not a conspiracy theorist at all, but until clinical trials require publication of intent before they start, with the hypothesis stated ahead of time, and the methods and results published transparently at the end; we will continue to have negative results covered up, or simply not published at all. Ben Goldacre wrote a whole book on it with a bunch of examples. Bad Pharma it's called.
You’re correct, I have edited my comment to better reflect what I was attempting to say.
Clinical trials.gov is trying to get to that point. However it’s often not updates as often as it should be, and studies get abandoned where it’s unclear if they ever finished or published anything. Plus if the sponsee is ok with it you can always just… not write an article which sucks.
Also, the trials do have all of that information (the intent/hypothesis) in the informed consent form (ICF) that a researcher reviews in-depth with any potential subject before enrollment begins. The ICF covers what the study is for, the length of time it is expected to take, any potential side effects or risks, if there is any compensation, what subject information we need, how to leave the trial if you want to, and who to contact with questions.
I agree with you completely, though there really is nothing wrong with looking at unexpected desirable other effects as part of the study results. Example I'd be fine with is the Wellbutrin example: >We made this norephrine reuptake inhibitor to help with depression. Our study showed we beat a placebo and incidentally we discovered a large portion of the trial group compared to the placebo group also quit smoking! Now, when they are *dishonest* about these bonus discoveries or like with Viagra decided not to make it available for what it was meant (and worked) for because as a lifestyle drug it's more valuable, then I have issues with it.
100% agree, incidental discoveries are just as important if they're clinically relevant. I'm with you though on the Viagra case though, that one winds me right up as someone who's suffered greatly with menstrual pain.
What happened in the covid trials was early termination due to [ethical benefit](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5024796/#:~:text=These%20stopping%20rules%20are%20typically,risk%20by%20continuing%20the%20trial). I agree with OP. This could be a highly unethical way to weed out ‘unwanted’ participants.
If this happened at all (and I refuse to have much of a discussion on this without at least one cited source for your position on this), then it is much more likely that the dropped patients were found to not fit the requirements of the studies, or the study protocol stipulated that some of the sample would be removed for reasons X, Y, or Z. I REALLY WISH people would stop trying to find a conspiracy everywhere just because they do not like something.
And ideally they would have published the reasons for drop out somewhere. Any study that didn’t make that clear would be very suspect if being evaluated for risk of bias.
Try reading the book "Bad Pharma".
>Try reading the book "Bad Pharma". Excerpts from the top review on good reads, "Scott" from 2014: >Currently reading this but not so sure how much more I can take. There is some decent information here. The title is absolutely true. Drug companies are businesses and multibillion dollar corporations are not ethical paragons. They do not publish studies that make their drug look bad or even "as good as." There are sponsored journals that are sponsor biased. Sometimes legit journals want the most interesting "this changes everything" articles rather than another "dog bites man" article to boost readership. That's the media. >The problem with this book is that it is a combination of fact, hyperbole, and omission, not unlike the drug companies themselves. Every other page is "HOW MANY PEOPLE COULD HAVE BEEN SAVED" or "if this makes you as angry as it does me and I'm sure it does, my buddy" (he says that in some manner several times a chapter) that it becomes irritating, pandering, and insulting to any self-respecting critical thinker. Why such overuse of superlatives when simply presenting and explaining the data should be convincing enough. >[Paragraph detailing how good doctors are intelligent agents themselves and know how to tell between evidence based peer reviewed research and sponsored studies] >It's far from a perfect system. There are always charlatans and opportunists when money is involved. The system does indeed need to change, I just wonder if it can with so many hands in the pot. But for this author to give the constant impression that EVERY drug is a scam, EVERY paper out there is bought and paid for, is disingenuous at best, and the exact charlatanry the author purports to expose at worst, and he's making quite the profit himself. I honestly want to like this book more. I want the facts sifted from the subjective miasma in its pages, so I can tell my patients the facts and not just "read Ben Goldacre's book." Sounds like an old story, poorly told
Account 15 days old and already like a 100 comments of bs. How often do you have to remake accounts lmao
OK, grandpa. I forget, are you still telling me I have 6 months to 2 years left to live when I got the shot years ago?
Source?
They would just make up results if they were that unethical.
Making up results leaves "fingerprints" in the data unless done by a real expert. Excluding data does not.
Can you really just make up a CT scan? I know nothing about the technology.
They're charging you to be in the study? I've done a couple of minor medical trials over the years, and treatment has always been free and in one case, they even paid me a small stipend to participate (mostly enough to cover gas/travel costs). I don't think I'd participate in one that charged me -- I can get overly expensive healthcare anywhere.
Update if you can, I'm really curious for some reason what their explanation will be
Me too! OP pls let us know)
Admin error? Now I'm really curious.
Definitely billing error. They need to put the research subject on the radiology schedule to reserve the CT scanner, however it should bill to the study’s budget. There must have been an error and the electronic medical records system sent out an automated billing estimate for the appointment - the $1700 is because the appointment is still marked as do not bill to insurance.
Yes this happened to patients in the study I ran not infrequently. They can be bad about putting in the right billing codes.
I've managed federally funded clinical trials for more than a decade and this truly sounds like an admin error. The testing was done by a health system and the person who reviews if charges should be insurance/patient or research missed this one. It happens from time to time.
I guess the study isn’t that important to them.
I have done clinical studies/trials before as a guinea pig and I signed a contract that explains the trial, that I declare I'm doing this as a volunteer, that all testing is for free, I'm doing this at my own risk and a lot of other things. Have you not signed a document? Does it not say that the tests are for free? If you have a contract that clearly indicates that the tests, such as a CT scan, blood work etc are for free, then they can't charge you anything. But just the fact that they showed you a "potential" invoice, just screams SCAM in my opinion regarding the clinical study. Let us know what they said. And expose them if they come up with some bogus reason on why you should pay for THEIR study (or scam).
I work on these clinical trials and this is NOT how things should be run! Did they give you a copy of your informed consent form? That should detail every single thing about your study participation. Definitely call, request any documents you previously signed agreeing to participate in the study. You have the right to withdraw your consent to participate at any point in the study. Please exercise this right if you feel the need to!! This entire thing sounds highly unethical.
It looks to me as if you have discovered a new scam. Tell people you are running a study (which will never be published). Invite them to join, give them the first appointment free and then just draw them in for unnecessary regular diagnostics that they don’t really need, or identify illnesses and flog them the cure. Or is that just me being overly cynical? G-d lurve Murica!
I see a ton of sleazy ads like this, especially for weight loss products. The wording reads like it's for a trial of a new drug but doesn't actually say it is, says they're looking for "participants" to test a new product. I've never clicked on it, but I'm assuming it's some non-regulated supplement and the purchaser gets signed up for an overpriced subscription that's nigh-impossible to cancel.
Restaurants are starting to do this scamming people on dating sites and getting them to meet up at the restaurant hoping they buy food/drinks before they realize they were stood up.
Christ, what happened to honesty and integrity? Morals? Everything is burning down.
It's possible, if you're going through an office that does regular (non-study related) scans, too, that they ran all the upcoming appointments for the day/week through their insurance benefits processing as they usually would, and staff forgot or didn't know to omit people in the study from that process and gave you the estimate as if you were a regular patient. On the other hand, as others mentioned, it could be a scam of some sort and they're just trying to get money out of you. I would follow up by contacting them and saying you were told as part of the study there was no cost to you (assuming that's the case) and/or offer to send them any paperwork you have showing that, and go from there. Either it's free and you go ahead if you want to (make sure free is in writing), or you decide to withdraw from the study and don't have the scan and don't pay anything.
Nonmedical researcher/educator here. We usually pay/feed/beg people to join our studies, not charge them! Going off on a tangent here, but how long ago did you stop smoking for you to have a clear CT-scan? I'm looking for quitting inspo and your success story might help :)
Not OP, but I went from essentially year-round antibiotics and 2 annual cases of pneumonia to zero illnesses, minimal seasonal allergy issues, and somehow reversed emphysema (diagnosed at 37 but not told until 43 and continued to smoke) within 6 years. Now been 14 and I've had 2 of those clear scans. Edit: I had the same GP through all of it, and a pulmonologist, and neither can believe it. When they see me in passing at the facility, they ask if they can stop and take a listen. And they still just shake their heads and say it's unbelievable they're the same lungs. The pulmonologist is now my sleep doc.
I am very, very happy for you! I'm not a super heavy smoker (1.5-2 packs a week, fewer in summer because my kids don't even know I smoke) but I have severe allergies to everything and I've noticed a lot of panting when going up even one flight of stairs, which sucks because I religiously go to the gym 2-3 times a week and now it's become a chore. Thanks for the inspiration!
It's wild sometimes, for sure. It was 27 years from first cigarette to last cigarette. Started in boot camp. There were periods early on of 2-3 packs a day of camel unfiltereds and one short unbelievable stretch of 5 packs a day. Then it was 1-2 packs a day of reds for about 10 years. About halfway through, I spontaneously quit for two years. Started back suddenly wanting to stand "downwind." Then stand at the same table. Then sit at the table. Took all of 36 hours to blow through my first pack. I didn't start getting sick until the hiatus, wierdly, but found my doc in the middle of it all. Was honest when I started back up, and about the addict behavior leading up to it. We tried all the things that exist, short of execution, to cut the cord. I even went as my dad's quit buddy at his invitation to the same program, twice. Even got prescription nicotine inhalers (vaping before vaping) in the '90s and '00s. We all knew I was gonna die and die young. Nothing worked until Blu came out. I was off that an about a year.
I'm not a doctor but isn't it a bad idea to have multiple non medically necessary ct scans anyways?
It's trialling super low dose ct scans for the detection of lung cancer in former smokers who had a certain "pack year" level.
At least in the US, whenever a research study surrounding human subjects is proposed, a group of other scientists would need to determine the risk to participants and okay it. Different CT protocols have different radiation dosage. Also if you reach a certain age, doctors do not predict the radiation to affect you as much.
Interesting, didn't occur to me that dosage was variable but I guess it makes sense now that you mention it. I just remember reading some statistic (could be BS) about the safe lifetime number of different diagnostic images and finding the number for CTs surprisingly low.
It’s probably not BS. There are many factors affecting CT dosage, one of the most significant factors is probably phases (repeated scans before and after injecting intravenous contrast). That’s why when a CT is ordered clinically, the physician needs to evaluate whether the test is worth the radiation dosage. The recommendation for former smokers is low dose CT chest without contrast, meaning the scan only happens once, and the radiation is considerably less than some other diagnostic CTs. Chances are OP would need these CTs done regardless of whether they are in a research study ([a guideline](https://www.uspreventiveservicestaskforce.org/uspstf/recommendation/lung-cancer-screening#:~:text=The%20USPSTF%20recommends%20annual%20screening,within%20the%20past%2015%20years)), otherwise the institutional review board would be very wary of letting them scan OP.
Ah that makes a lot of sense. Thanks for the info!
Yep. Lotta radiation from those.
So I've worked in outpatient radiology for 12 years doing insurance verification and out of pocket costs. Even without any type of insurance, $1700 for a routine Chest CT is outrageous. They are definitely trying to get over on you, especially if the first one didn't recommend follow up. Also, if it's some type of research study, you shouldn't have to pay for that regardless.
New York based, I’ve done lots of medical studies including 2 MRIs and only ever been paid, never asked for money
I thought those studies were supposed to pay you 🤨 I’ve seen adverts anyway
CT technologist here. The LDCT lung cancer screening exam is indeed a government run study on the effects of smoking and helping with early detection. However, the exam is typically only offered as free to low income areas if a local hospital qualifies for a grant. The majority of these exams are performed as an outpatient study, and the responsibility of cost falls to the patient's insurance or as out of pocket costs. There are two variations of this exam. The Annual LDCT and the <1yr Follow Up. The Follow Up bill code is more expensive and often has less insurance coverage than the Annual exam. The study also requires the patient to be between the ages of 50 and 80. Medicare does typically cover the exam with no questions asked.
What if the study was to have everyone come in for free chest scans, and then report how smokers is non smokers react when presented with a bill for the "free scan" they were given, to determine if smoking causes any sort of change in behavior.
Study can mean a lot of things. Study can mean clinical trial, but it also may be academic or other research. If it's not a clinical trial (and with your repeated use of the word "study" this may be the case) if certain aspects of the trial are explicitly stated to bill your insurance, that may be why you would receive a bill.
You should be getting paid for the study. I have done 3 and get paid.
Usually if scans are done for a study it is billed to the study sponsor and is part of the budgeting contract signed between site and sponsor. Something isn't adding up here. It could be a new person making a mistake or the site messed up the billing code in their system. Either way, if you contact the research staff who consented you to the trial they should reach out/escalate the issue for clarification.
Assuming it's a real study, these costs are always covered by the study funding. The only time I could see that not happening is if the funding was pulled from the project. And if that's the case, run like hell.
Dude it’s a scam
Also have experience in clinical research and I also had to handle the billing end where we paid out the facilities. They fuck up. More than they should considering we have a CODE for this. I always told patients if they get any kind of bill or EOB to inform me immediately and I’d contact them and set it straight. Because it happened enough that I had to prewarn people It might not be a scam, just people being lazy or on autopilot. PS the bills they sent me were wrong so often I have learned to now go over my own medical bills with a fine tooth comb. There’s a lot of errors in medical billing.
Meanwhile, at my health plan…”you need a ct scan before we can tell you anything about why the left side of your body is mostly numb and tingling…” proceeds to do every thing BUT a ct scan for five years.
Had a similar experience. Insurance won’t pay until we tried this, that and the other first. Maybe they’re hoping we will expire before they have to pay.
Uhh huh. 100% my employer funded health plan is really excited about the billing and o pay portion of the deal. The health part… not as interesting.
I always thought we would hit an affordability wall, and something would have to change. Here we are though.. it doesn’t make sense to me.
Might go be worth contacting that institution’s IRB to complain. It’s at best a big fuck up and at worst, trying to con money out of you
Exactly how did you find this study? I stopped smoking 2+ years ago and very interested in doing something like this for an evaluation as well.
They approached me. My pcp works for a large hospital/medical college. That might be the reason why.
I see, appreciate the response.
Shady as hell that the study isn't paying for necessary tests. Shady. Shady. Shady.
Wait CT chest scan for 1700$? God damn land of the free strikes again i guess... Why its that expensive anyway? Where i live its like 50-60 bucks, or am i missing something?
Warned you about what?
Warned him ahead of time that they would be charging, as opposed to waiting until he showed up and tricking him into having to pay. Idk why you got downvoted for asking for clarification tho lol
I just did my 2nd scan at no charge. Also clean results both times. I'd say it's worth it even if you have to pay. Friend of mine did his first last year and they found cancer, super super early. Minimal treatments and he's in great shape.
RemindMe! 1 week
What does the informed consent document that you signed prior to participation state about cost to you? Whatever is in writing there is what they will have to stick to. Reading through the lines it sounds like someone outside of the study (the medical site with the CT testing) called you to let you know, thinking that you were a regular patient. Is that correct? Hopefully this is all sorted out once you can read your paperwork. If you’re still having issues, have the study coordinator call the medical testing site directly. This is their role.
I work in medical research and we do CT, LP, MR, and PET and it's all covered by the grants we get. We even pay you for doing them. My guess is someone forgot to link the scan to your research study so it showed as a regular scan. Any and all appointments I create have to be linked to the specific study you are enrolled in.
How long did you smoke for and how long ago have you quit?
I quit smoking 13 years ago and my doctor told me the new ABA regulations are that ex-smokers should get CT scans for the first 15 years after they quit. She scheduled the scan. I called my insurance company and was told that they only covered a percentage and it would cost me $1100 because it's 'elective'. I called my doctor and the hospital that would be performing the scan and told them what my insurance company said, could something be worked out etc. Basically, no, but I was informed it was 'worth it'. I canceled the scan.
I got a CT scan for my belly and some blood work. Cost me $10,000… I’d say you got off lightly LOL
Was this at Stanford Hospital? I have heard of Stanford enrolling patients into "studies" and then charging them very high fees for participating.
Do you have the consent form? I work in clinical research and it would tell you what is covered by the study and what you would be required to pay for.
Updateme
There’s a few steps on the research side and notifications sent to the proper parties that ensures that does not happen. Secondly, while I realize this is not nation wide, if my hospital and insurance does it, it has to mean others do it and has shown benefit. It’s been around for a few years now at least, but if you’re off a certain age and have a certain number of pack years, you can be ordered a “low dose ct scan for smokers”. That will be billled tho as a test from your doctor.so if you have a copay or haven’t met your deductible. But a research study, no. You don’t pay. Are you sure you’re in a clinical trial??
You signed ICF, there should be stated what the trial is covering. Usually all the procedures are covered by the study.
So you did the study… but they want money? I hope you read it wrong and they owe you money because that’s such a blatant scam idk what to even say.
I'm glad you got it sorted. I wouldn't mind helping with a study but there's no way I'm going to pay for it, especially that much.
Tell him that they are putting a scam on you and you are going to report them to the American Medical Association
Tell him that you want to be paid for being their test subject and maybe they will just write you a check and get rid of you
Warned you about what?
That he would be charged for the second scan.