9 ms·
The emotional trial of clinical trials: like online dating with death risk
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- IncreasePosts 2y agoEvery action carries with it a death risk.
- operatingthetan 2y agoYou're over-generalizing in order to dismiss.
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- data_maan 2y agoWhat a depressing, yet enlightening read.
- squigz 2y agoThis sums up most of Jake's (and Bess') writing lately
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- data_maan 2y agoThe issue with the medical system is similar to the issue with prisons: It has no person that is motivated to care about it. If you are an inmate, or a patient you're just happy once you're out, and don't want to spend more of the time to fix. And if you're a free or healthy person, why devote time to something that will likely not concern you? (It might some day, but few people are reflecting enough to realize this.) Respect to the authors for writing this. It will, in time, make a big difference as other people read - like compound interest that accrues slowly but steadily. I wish them all the best, hopefully one of the drug will work, and there will be some kind good way forward!
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- faeriechangling 2y agoAs somebody with my own grievances against the medical system, it’s not just that it’s in my interest to dust my hands off and walk away, it’s that the medical system is a 9 headed gigantic hydra that I feel impotent to do anything about it without dedicating a huge swathe of my life to being a reformer and even then I’ll likely be shouting into the wind. The amount of parties which can have some interest in keeping a broken part of the medical system broken is staggering, it can extend from researchers to doctors to insurers to the government to institutions to businesses to the patients themselves and their families AT THE SAME TIME just because of the sheer amount of money that gets thrown around even if the actual medicine is nonsense. Reforms risk fucking with the money and you DO NOT fuck with the money!
- readyman 2y ago>The issue with the medical system is similar to the issue with prisons: It has no person that is motivated to care about it. Why prisoners must be able to vote or you cannot claim to have a democracy
- VS1999 2y agoSounds good to me. We've been trying democracy for a while and I'd like to try something else.
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- K0balt 2y agoVer depressing article about a subject I’m all too familiar with.
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- timr 2y agoThis was not what I expected to read, and therefore much sadder to me. I had expected to see an article about the emotional strain of not knowing if you're in the control arm or the treatment arm for a late-stage trial. You know that you're in an experiment, and you might get a new drug -- or existing standard of care -- depending on a roll of the dice. This was very different. The author is describing a mad scramble to get enrolled in a phase 1 clinical trial, and discussing the scramble as a life-or-death critical choice. Even ignoring the question of whether or not you're in the control arm, these kinds of trials have no guarantee of much of anything. It's even possible the drug itself might hurt you, because that's exactly what they're looking for in phase 1. Per the clinical trial registration for PDL1V: > Part C will use the dose found in Parts A and B to find out how safe SGN-PDL1V is and if it works to treat solid tumor cancers. (emphasis mine) I don't know if the author knows this, but I can't imagine the stress of not being well-informed about the purpose of an experiment like this. And those doctors who are telling him things like "SGNTV had successfully shrunk a lot of tumors" is so maddening, if they didn't follow that with "...but we don't know what it will do in humans, because it's a phase 1 trial". It's not at all clear that they did, because of things like this: > If I was given SGNTV, I’d have three systemic lines of therapy and be ineligible for PDL1V. And the same in reverse. Sophie’s Choice! and later: > A downside of all these phase 1b studies is that there’s little published data, which makes comparisons difficult. Oncologists almost never give numbers: “We dosed 10 patients, and the disease control rate in phase 1a was 50%.” Instead, they’ll be vague, but they’ll also indicate why they think their top trials are their top trials. If true, this is so, so, so irresponsible. Tell people that you don't know the answer! The control could easily be better than the drug! Don't give them false hope! So agonizing.
- andyst 2y agoHaving been through similar processes with family, scouring medical journals and trials for the answer as if its stack overflow, you're in a period of high stress I think I can understand that may have led to the authors perspective and expectations shaping the narrative here.
- timr 2y ago
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- j_m_b 2y agoThe author is very technologically sophisticated. Imagine how difficult it would be to enroll if this was not the case, just finding trials alone is an arduous task. Streamlining clinical trials, particularly in recruitment and enrollment, is a hard problem.
- jseliger 2y agoPart 2 does note that I better understand why a lot of people take whatever local trials are available and hope. I have a lot of advantages and this has been brutal and crushing.
- sam537 2y agoI am close to some of these institutions and it pains me to hear the trouble you had just getting an answer a yes or no answer or getting your paperwork checked for eligibility. In large institutions there is not only an institutional culture but a Department-specific culture (as crazy as that sounds!). I am lucky to be part of a Department that has a immediate attention and transfer attitude from leadership and it permeates down to the faculty and next-day appointment slots are kept open and things accommodated. I wish you the best, and it makes me want to work even harder to hear about the challenges we still face.
- jseliger 2y agoYeah, some of them have been great: "Two are obvious: Memorial-Sloan Kettering (MSK) in New York City and Dana Farber in Boston, and our experiences with both have been fantastic (not because there is less bureaucracy, but because the doctors we dealt with there were not completely beholden to it)." If you have what I have, those are both good. UCSD Health is enormous, but I was also able to get an initial telemedicine consult there, which was fantastic, I think in part because the head and neck oncologists understand the obvious regarding how hard it is to travel. Now, to get that telemedicine appointment, I did have to drive over the California border, and do it from California, but they were willing to make the appointment happen and I solemnly promised that I was in face in California.
- Wonnk13 2y ago35 year old stage 4 colon cancer patient here. Cannot emphasize enough his part about patient agency. It’s insane how much research and advocating for myself I’ve had to do.
- LeroyRaz 2y agoThe stress and difficulty of trying to get one's best chance of survival sounds incredibly hard. I hope the author (and others in similar situations) keep fighting.
- n8henrie 2y agoWow, I'm really surprised he's still alive. This has been an interesting (and difficult) saga to follow on HN.
- jseliger 2y agoI'm also surprised, FWIW. In July 2023, I wasn't sure if my lifespan might be measured in weeks, and doctors conceded that, given how fast the tumors had recurred and metastasized, "weeks" was plausible.
- s1artibartfast 2y agoI think the sad and exhausting truth is that phase 1 trials aren't designed to facilitate patient choice, engagement, and agency. The drug isn't commercially available, and the trials are not a public service.
- timthelion 2y agoI'm surprised and impressed at how much energy you have to deal with this and write about it. I'm a month out from having a squamous cell tumor removed from my tongue and a kneck disection and most of the time I just lie around in bed feeling sorry for myself and even that is pretty exhausting. I hope the trial drug works, both for you, and selfishly, for me in case I'll need it!
- ngneer 2y agohttps://clin.larvol.com/all-data https://clin.larvol.com/all-data