from the very-few-things-in-life-are-100%,-except-death dept.
The lack of participation in clinical research may be the Achilles' heel of today's cancer community. According to a new survey of more than 1,500 consumers and nearly 600 physicians conducted on behalf of Memorial Sloan Kettering Cancer Center (MSK), only 35 percent of Americans indicated that they were "likely" to enroll in a clinical trial. Other studies have shown that only 4 percent of cancer patients enroll in clinical trials nationally each year.
Additionally, the new data shows that only 40 percent of Americans have a positive overall impression of clinical trials. Taken together, these statistics are sobering given that nearly every advance in cancer today was first evaluated in a clinical trial. Clinical research is increasingly dependent upon larger numbers of cancer patients participating. Fortunately, education makes a measurable and immediate difference. After reading a brief statement defining clinical trials, the number of respondents who had a positive impression of these studies jumped significantly, from 40 to 60 percent.
"When it comes to advancing cancer care, clinical research is the rocket fuel for better treatments, more accurate diagnoses, and, ultimately, cures," said José Baselga, MD, PhD, Physician-in-Chief and Chief Medical Officer at MSK, where more than 900 cancer clinical trials are currently under way. "If this trend of low enrollment continues, we will face a crisis in cancer research and discovery. Further education is the key to participation and progress."
Consumer respondents cited a range of concerns as barriers to clinical trial participation:
• Worry over side effects / safety (55 percent)
• Uncertainty about insurance and out-of-pocket costs (50 percent)
• Inconvenience of trial locations (48 percent)
• Concerns about getting a placebo (46 percent)
• Skeptical of a treatment that is not yet proven to work (35 percent)
• Worries over feeling like "guinea pigs" (34 percent)
Experiences like the Tuskegee Experiments reduce the public's willingness to trust medical personnel? You don't say...
(Score: 3, Informative) by fishybell on Wednesday May 25 2016, @12:38AM
I was recently called by the University of Utah to participate in a study, and I turned them down for none of the reasons given. They were doing a study on lumbar back pain, and I was seeing the doc for thoracic back pain. I felt it wasn't worth my effort to fill out a bunch of forms just to be excluded down the line.
(Score: 5, Interesting) by Runaway1956 on Wednesday May 25 2016, @12:58AM
Part of the process of enrolling, is to sign a bunch of waivers, relieving the researchers and the facility of any liability if things go wrong. So, what happens when things DO go wrong? The drug you are testing has lasting side effects, and it's nobody's problem but your own.
Clinical trials don't have a very convincing track record. How many drugs have been recalled in the past decade, because they had side effects that were missed during clinical trials?
I would need some reassurances before I ever signed on the dotted line.
Abortion is the number one killed of children in the United States.
(Score: 2) by LoRdTAW on Wednesday May 25 2016, @01:16AM
The interesting part is the fear of receiving a placebo.
You have a fatal form of cancer. You chances of survival are slim to none. However, there is a clinical trial for a new drug that targets your type of cancer. So you enroll in the trial and hope you get the actual drug hoping it will work. Instead, you get sugar pills and are none the wiser. You die. Years later it just so happens the drug was proven to be extremely effective in the trial tests. Your death could have been prevented if only you received the actual medicine. You're dead and there is nothing your family can do. The thought of being deceived and left to die with a false sense of hope is scary. But either way, you still have better odds in the trial than nothing. 50/50 is better than 0. Worth the risk and it helps humanity in the long run.
(Score: 0) by Anonymous Coward on Wednesday May 25 2016, @01:30AM
This (a drug proven to be extremely effective) has pretty much never happened when it comes to cancer, so the odds that scenario will arise are very low:
http://www.csicop.org/si/show/war_on_cancer_a_progress_report_for_skeptics [csicop.org]
(Score: 0) by Anonymous Coward on Wednesday May 25 2016, @03:32AM
Maybe you missed these:
https://soylentnews.org/article.pl?sid=16/05/17/0127235 [soylentnews.org]
https://soylentnews.org/article.pl?sid=15/04/17/2157254 [soylentnews.org]
(Score: 0) by Anonymous Coward on Wednesday May 25 2016, @03:53AM
The first link didn't link to much info, so I clicked the second and followed the FDA link and saw this:
Wow, no control group. Honestly who would really care unless they had some vested interest in that particular therapy or the system that encourages this behaviour...
(Score: 0) by Anonymous Coward on Wednesday May 25 2016, @11:26AM
The patients were either treated with Ketruda or Yervoy. While monitoring disease progression, such clear differences in disease progression were seen that the trial had to be stopped and all patients were given access to Keytruda.
Cancer immunotherapy and immune checkpoint inhibitors are proving to be very effective. Oncolytic viruses still need more time to develop, but some results (such as those from Dr. Stephen Russell at Mayo Clinic) look promising.
(Score: 0) by Anonymous Coward on Wednesday May 25 2016, @03:19PM
This is in direct conflict with what it says at the FDA link (not that that is a very detailed source of info itself). You will need to cite where you got this information for there even being a chance of me taking it seriously.
(Score: 0) by Anonymous Coward on Wednesday May 25 2016, @09:46PM
Sorry about the original links, I didn't know they were broken (updated links at the bottom).
Here is a better link about the trial (pembrolizumab is Ketruda and ipilimumab is Yervoy):
In this randomized, controlled, phase 3 study, we found that two regimens of pembrolizumab, as compared with ipilimumab, improved both progression-free and overall survival in patients with advanced melanoma. The relative risk of progression or death was decreased by 42% with the two pembrolizumab regimens that were tested, and the relative risk of death was decreased by 31 to 37%. Because the overall survival results at the second interim analysis crossed the prespecified efficacy boundary, the trial was stopped for efficacy and the results were unblinded.
http://www.nejm.org/doi/full/10.1056/NEJMoa1503093 [nejm.org]
And the clinical trial itself:
https://clinicaltrials.gov/ct2/show/results/NCT01866319? [clinicaltrials.gov]
From the reuters link:
"Patients taking Keytruda showed meaningful improvement in overall survival and in delayed progression of disease, compared with those taking Yervoy"
"Bristol-Myers in January said it was halting a trial of Opdivo for lung cancer, also at the advice of independent monitors, when it became clear the drug extended survival compared with standard chemotherapy."
http://www.reuters.com/article/us-merck-melanoma-idUSKBN0MK1FO20150324 [reuters.com]
Non-broken links from the "Another Cancer Immunotherapy Success" story:
http://blogs.sciencemag.org/pipeline/archives/2015/04/17/stopped_for_efficacy_again [sciencemag.org]
http://blogs.sciencemag.org/pipeline/archives/2015/03/24/the_best_way_to_halt_a_clinical_trial [sciencemag.org]
(Score: 0) by Anonymous Coward on Thursday May 26 2016, @02:04AM
Thanks, this is referring to a completely different study than the one referred to in the FDA link.
http://www.nejm.org/doi/full/10.1056/NEJMoa1503093 [nejm.org]
I will take a look.
(Score: 0) by Anonymous Coward on Thursday May 26 2016, @02:11AM
First impressions. 1) The figures are all blurry for some reason. I literally cannot read the axis labels. Trivial, but really? 2) The results are due to an unblinded person who decided they look good:
(Score: 0) by Anonymous Coward on Thursday May 26 2016, @02:17AM
More impressions. Pretty much everyone in all groups had progressed after about a year, overall survival was at 50-70% after 1.5 yrs. I don't see much improvement over:
http://www.cancerresearchuk.org/about-cancer/type/melanoma/treatment/melanoma-statistics-and-outlook [cancerresearchuk.org]
(Score: 0) by Anonymous Coward on Thursday May 26 2016, @02:46AM
I tried to make a post after my earlier one but it said I was posting too quickly. Anyway, I started to think this amounting to investment advice: 1) That is different from assessing whether the drug works. 2) It could be worked out if you are interested.
(Score: 0) by Anonymous Coward on Wednesday May 25 2016, @01:39AM
The thought of being deceived and left to die with a false sense of hope is scary.
In other words, medical professionals are deceitful scum, worse than lawyers. Fuck them.
(Score: 5, Insightful) by Kell on Wednesday May 25 2016, @01:54AM
Except that's not how it works. Typically trials of experimental life-saving drugs are evaluated against the existing therapy (whatever that is). The control group is simply given the existing treatment, and their only "participation" in the trial is monitoring and metrics. They're no worse off than if they weren't involved in the trial at all, since they're getting the current known best treatment anyway.
Scientists ask questions. Engineers solve problems.
(Score: 0) by Anonymous Coward on Wednesday May 25 2016, @03:40AM
being deceived and left to die with a false sense of hope
That chance of receiving a placebo is supposedly one of the hardest things to explain to patients. They are supposed to be informed, but a lot/all that enroll in efficacy trials are hoping for the experimental treatment despite knowing the chances.
(Score: 0) by Anonymous Coward on Wednesday May 25 2016, @05:13AM
I've been thinking that a cheaper, but still useful, control group may be people who just don't care. They know they are getting nothing (except some money), and will just continue doing whatever it is they do. It would let us figure out first: can the experimental cancer treatment beat that? If it does, that doesn't mean much. If it doesn't, it clearly doesn't work.
(Score: 0) by Anonymous Coward on Wednesday May 25 2016, @10:43PM
We have a large control group in the US. It's called uninsured people.
(Score: 1, Informative) by Anonymous Coward on Wednesday May 25 2016, @01:11AM
Still? Well, shit. It's exactly like Obama doesn't fucking Care.
(Score: 1) by anubi on Wednesday May 25 2016, @03:35AM
My take is Obamacare is to guarantee the hospital gets paid.
They claim you pay "only" 50%, then sell you things like five dollar aspirin pills until you are bankrupt.
This is another variant of the HARP home financing scam...
Look at how its worded. Its not to keep a family that stands to lose their home for lack of a couple thousand dollars...
Its there to make sure the bank does not end up having to take back homes from those who had no equity to begin with.
"Prove all things; hold fast that which is good." [KJV: I Thessalonians 5:21]
(Score: 0) by Anonymous Coward on Wednesday May 25 2016, @02:25PM
Yup. If I had somewhere I could stay with free room and board, I could quit my job and have better medical care through medicaid due to having zero income.
As it stands, I work a job I fucking hate and am forced to buy whatever shit plan my employer has chosen this year because I don't qualify for any fucking subsidies. I checked myself into the emergency room recently and it turned out to be minor. They could have released me the next morning but they fucking didn't. Then they lied to me about my insurance covering the visit. I wanted to leave but they told me if I left without the doctor releasing me, insurance wouldn't cover anything. So I stayed and stayed. Finally got released nearly a fucking week later.
Guess what? I get to fucking pay for it all out of fucking pocket because insurance didn't cover a single fucking dime.
(Score: 0) by Anonymous Coward on Wednesday May 25 2016, @10:47PM
Tell me you at least got a bed bath out of it.
(Score: 0) by Anonymous Coward on Wednesday May 25 2016, @01:17AM
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4270077/ [nih.gov]
Even the people who don't like trying to reproduce cancer research say it is because it is naive to clean out the "Augean Stables" that way.
http://www.slate.com/articles/health_and_science/future_tense/2016/04/biomedicine_facing_a_worse_replication_crisis_than_the_one_plaguing_psychology.html [slate.com]
http://www.nature.com/nrd/journal/v10/n9/full/nrd3439-c1.html [nature.com]
http://www.reuters.com/article/us-science-cancer-idUSBRE82R12P20120328 [reuters.com]
http://www.nature.com/nature/journal/v483/n7391/full/483531a.html [nature.com]
http://www.sciencemag.org/content/348/6242/1411 [sciencemag.org]
http://journals.plos.org/plosbiology/article?id=10.1371/journal.pbio.1002165 [plos.org]
http://www.nature.com/news/cancer-reproducibility-project-scales-back-ambitions-1.18938 [nature.com]
(Score: 1, Funny) by Anonymous Coward on Wednesday May 25 2016, @01:30AM
Wait, what. Scientists are attention whores who won't do anything unless guaranteed good publicity, grant monies, and nubile grad students. Say it ain't so. Why don't these alleged scientists give blowjobs for citations too. Oh right. They do.
(Score: 0) by Anonymous Coward on Wednesday May 25 2016, @02:02AM
If a community of researchers spends decades not trying to reproduce each others work, letting the problems build up so that now the news is talking about the irreproducibility, are they scientists?
(Score: 0) by Anonymous Coward on Wednesday May 25 2016, @10:36AM
If a community of researchers spends decades trying to reproduce each others work, but no-one wanted to fund them so that now they're no longer employed, are they scientists?
:]
(Score: 0) by Anonymous Coward on Wednesday May 25 2016, @05:16AM
That Forscher essay cited is great:
http://science.sciencemag.org/content/142/3590/339.1.pdf-extract.jpeg [sciencemag.org]
(Score: 4, Insightful) by Snotnose on Wednesday May 25 2016, @01:37AM
They're gonna give me an unknown drug for x weeks, ask me to spend a ton of time answering questions, and pay me maybe minimum wage while I potentially agree not to drink or eat certain things? Um, no.
Let the broke college students do it. They're young and healthy, they need the money, and if they ain't answering questionnaires they're wasting their time either studying or partying anyway. Plus they're young and naive.
Relationship status: Available for curbside pickup.
(Score: 2) by PartTimeZombie on Wednesday May 25 2016, @03:09AM
I had a similar conversation with someone who wanted me to do a radio survey recently.
They would "put me in a draw" for a prize. I told him if the data had a value, he should pay me for it and named a price.
(Score: 2, Interesting) by anubi on Wednesday May 25 2016, @04:55AM
That damned "you-get-a-chance" scam is the oldest in the book... and people STILL fall for it!
"Prove all things; hold fast that which is good." [KJV: I Thessalonians 5:21]
(Score: 2) by Some call me Tim on Wednesday May 25 2016, @03:40AM
Just hearing the list of side effects on the crap that has been approved is enough to make me run the other way, let alone the experimental stuff. Everything from nausea and blindness to suicide if your dick falls off or thoughts of suicide if it doesn't. I'll stick with good old safe Aspirin thank you ver *ACKcckk!* THUD. ;-)
Questioning science is how you do science!
(Score: 0) by Anonymous Coward on Wednesday May 25 2016, @10:42AM
Wasn't there some medicine for restless leg syndrome... with a strange side effect of "increased urge for gambling" or something like that? Because gambling is definitely a smaller problem then leg shakes.
(Score: 1) by anubi on Friday May 27 2016, @03:28AM
Same with anti-depressants... ever seen the side effects to those?
"Prove all things; hold fast that which is good." [KJV: I Thessalonians 5:21]
(Score: 4, Informative) by gOnZo on Wednesday May 25 2016, @10:31AM
It seems two-faced to me for scientists and the drug companies funding their research to bemoan the sad state of altruism in the general populace by failing to support their quest for effective treatments to the scourge of our age - which affects US ALL. Yet after the clinical trials are done, the drug companies make billions in profits flogging their wares to THE REST OF US. Funny how altruism goes out the window.
(Score: 3, Interesting) by RamiK on Wednesday May 25 2016, @01:08PM
Last I heard, US pharmaceuticals is quite the profitable business. Being a doctor isn't too bad a job either... So, considering most of these trials involve a substantial risk to one's health and life, how about you compensate your test subjects accordingly? Start with a life long all-covered health insurance. Then throw in a few years worth of wages.
compiling...
(Score: 2) by PocketSizeSUn on Wednesday May 25 2016, @02:58PM
That's why we do this stuff overseas first.
If it's really sketchy -- first pass in some backward African country. If too many people die just quitely drop the study.
Next hit up Southeast Asia / India / South America. More expensive to drop the study if something goes wrong but you get a wider racial component for drug interactions.
Next hit up Eastern Europe / Mexico. Now when the study shows promise people will consider it's not just hype.
Next hit up Canada / Western Europe. Now people think ... it's going to be on the market ... as soon as it clears FDA trials ...
Finally good ol. usa / fda. Heck you might get away without a full study ... just refer the previous successful ones above and/or get the drug approved for something trivial, like an acne cream or a diet aid and promote the 'off label' use citing the previous study(s).