tag:blogger.com,1999:blog-5986812882047614235.post3086572204571549453..comments2024-01-15T13:54:44.833-05:00Comments on Chaotically Precise: Life, Love, and Melanoma: The Problem with Clinical TrialsLeshttp://www.blogger.com/profile/07988740020076170293noreply@blogger.comBlogger5125tag:blogger.com,1999:blog-5986812882047614235.post-73116151790319040342016-01-20T06:21:19.690-05:002016-01-20T06:21:19.690-05:00the problem is as you so eloquently put it - is th...the problem is as you so eloquently put it - is that there so often is NO EQUIPOISE - we knew on both my husbands trials which arm we hoped to be on BEFORE starting - until patients vote straight away with their feet and leave a trial when it is not giving them what they need , we will continue to see poor trial design and fall victim to them : I like to quote Article 8 of the Helsinki Declaration "While the primary purpose of medical research is to generate new knowledge, this goal can never take precedence over the rights and interests of individual research subjects."<br />Thanks as usual a great piece !<br />Anonymoushttps://www.blogger.com/profile/03534845903128746110noreply@blogger.comtag:blogger.com,1999:blog-5986812882047614235.post-76724829459913335482016-01-19T00:15:36.261-05:002016-01-19T00:15:36.261-05:00Agree, and yes that is what I meant to say, typos ...Agree, and yes that is what I meant to say, typos and all...just re-read my comment...man I need an editor. 0-;Anonymoushttps://www.blogger.com/profile/05706969511403814841noreply@blogger.comtag:blogger.com,1999:blog-5986812882047614235.post-89846912096732338362016-01-16T11:54:08.986-05:002016-01-16T11:54:08.986-05:00Carolyn, I think Leland is referring to when, in a...Carolyn, I think Leland is referring to when, in a clinical trial, you are assigned the lesser drug, like dacarbazine or interferon or nothing, rather than the treatment drug. Today there are too many more effective drugs on the market to accept a drug that is known to be less effective than those. However, when poor ratties have already utilized the "better" drugs without the desired effect, then more experimental drugs and treatments become a necessary evil should you wish to continue to seek care! It can all become very difficult indeed. That is why the entire clinical trial system needs to be improved with greater transparency for all concerned.Leshttps://www.blogger.com/profile/07988740020076170293noreply@blogger.comtag:blogger.com,1999:blog-5986812882047614235.post-22944477049975691522016-01-16T01:54:52.108-05:002016-01-16T01:54:52.108-05:00How do you know you've drawn the short straw?How do you know you've drawn the short straw?Carolynhttps://www.blogger.com/profile/17367698610633690565noreply@blogger.comtag:blogger.com,1999:blog-5986812882047614235.post-6292428083807210102016-01-14T14:35:44.967-05:002016-01-14T14:35:44.967-05:00Absolutely editorial post regarding the current st...Absolutely editorial post regarding the current state of clinical trials...have felt similar sentiments, though not so eloquently, over the last few years. Have a few initial comments:<br />a) how would a humanitarian update to current public policy being codified and executed? When dealing with often complex subjects related to health I think one of the challenges is to translate the intended outcome into rules and procedures that people administering the process (eg FDA largely) can follow. Hear I think there would be no substitute for a "human in the loop." E.g. a doctor and/or team of doctors that are not in the pocket of any vested interests but could, through given authority, exercise things like reason and common sense. I won't pretend to know the inner workings or key players in the current system. There may be rules that govern or call for just that, but are not being exercised. If that is the case, shame on them. There's a ton of money involved no doubt, but there are also a ton of lives at stake too. If I remember correctly, we are talking a yearly death toll just in American lives that is three time comparable numbers of the victims of 911. <br />b) Talking about open systems, in which information is freely exchanged, one of the true heroes in the arena of melanoma advocacy and change died yesterday, Susan Steel. Susan founded Skin of Steel in an effort to establish tissue banks across the US in which researches could freely share and exchange information regarding their work with sample tissue. These same kinds of banks, started by patients and not the gov or big pharma, have resulted in tremendous advances in breast, colon and lung cancer. God bless you Susan and thank you. http://www.donnellanfuneral.com/memsol.cgi?user_id=1732263<br />c. One thing I have thought for awhile is that, in particular with the burgeoning numbering of treatment options, is that somebody should be investing more in diagnostic or screening technologies and tests for the drugs available. E.g. before you make my a your guinea pig, tell me if this drug is even going to work or might possibly work. There are companies that offer avatar services now (eg grow my cancers in mice and test against available meds, look for potential weaknesses in my strain of cancer) for $10-20K. Why shouldn't or wouldn't all insurance companies want to invest or insist their patients do this. As an engineer, I can tell you we would lose our jobs if we ever sent out a fix to the field that was not properly tested first in a lab. Why not apply the same logic to this? Why not invest the money to develop better and better screening for PD1, PDL1, yervoy etc. There is some going on, but in my mind that would be a game changer. <br />d) Finally, my advise (and hope I don't need to participate in any of these again) to anyone that draws the short stray for some old school chemo instead of the fancy new immune therapy or whatever is 'walk' or better 'run.' Until the gap in efficacy gets closes between options presented that's the right thing to do, science be damned (instead of 'you'). Anonymoushttps://www.blogger.com/profile/05706969511403814841noreply@blogger.com