Obviously, I've collected a lot of negative examples in this thread ... mostly to encourage people to critically think about what is really in our (patients') best interest ... sometimes, if we don't look out for our needs, nobody else will ... we can get complacent if we blindly trust that others (docs, patient orgs, government, etc.) always have genuine concern for our well-being.

Yes, I'm feeling somewhat depressed and disheartened ...

at the same time, I still think that things have the potential to get better ...

whether talking about patients & healthcare ... or citizens and government ...

for instance, there are drugs that have been developed that save lives, there are docs who truly care, there are
patient orgs where patient needs are the primary focus, etc. ...

maybe we have to find that right balance between hope & critical thinking ...

-----------------------------------------------------------------


"Hope, Cynicism, and the Stories We Tell Ourselves"
By Maria Popova
https://www.brainpickings.org/2015/02/09/hope-cynicism/

QuoteCritical thinking without hope is cynicism. Hope without critical thinking is naïveté.

Finding fault and feeling hopeless about improving the situation produces resignation — cynicism is both resignation's symptom and a futile self-protection mechanism against it.

"Non-profit Alliance for Patient Access uses journalists and politicians to push Big Pharma's agenda"
Mary Chris Jaklevic
https://www.healthnewsreview.org/2017/10/non-profit-alliance-patient-access-uses-journalists-politicians-push-big-pharmas-agenda/#.WdOlakN_xiw.twitter

QuoteHealthNewsReview.org frequently writes about how patient advocacy groups are co-opted by drug industry funding, but the AfPA is something different, observers say: a front group established solely to do the bidding of industry.

QuotePatients for Affordable Drugs is one of the few patient advocacy organizations that pledges not to accept industry funding; it receives funding from the Laura and John Arnold Foundation, which also supports HealthNewsReview.org.

------


http://www.patientsforaffordabledrugs.org/

-----------------------------------------------------------



I'm including this link, not to discuss gun issues/N.R,A., but because I think it is relevant to patients & healthcare ... I feel like I've had power used against me as a patient several times and those experiences have changed the way that I see things ...



"If Only Stephen Paddock Were a Muslim"

Thomas L. Friedman,  OCT. 3, 2017

https://www.nytimes.com/2017/10/03/opinion/stephen-paddock-las-vegas-terrorism.html?smid=tw-nytopinion&smtyp=cur&_r=0

QuoteIt's also corrupt. Because it's driven by money and greed

QuoteForget about persuading these legislators. They are not confused or underinformed. They are either bought or intimidated.

QuoteSo there is only one remedy: Get power.

If experts, patient orgs, government representatives, etc ....

ignore you, are unresponsive to your needs, are evasive, disrespectful, lie, are not transparent, not accountable, treat you with contempt, do not listen to your concerns or ideas  ...

techniques such as improving communication or presenting objective data/facts might not help ... sometimes the solution is to get more power.

Social media helps to change the power dynamic.  Making sure our $$$ donations go to experts and orgs who are interested in being true partners with us to improve public health is important (experts and patients do need to work together imo to improve things). Voting gives us power.  Insisting on a say regarding how our tax $$$ is used for research gives us power.  Partnering with investigative journalists. etc.

There are times when collaboration is possible (and I prefer it), but sometimes, imo, you just have to be a PITA and join with other PITAs until people stop slamming the door in your face and truly share power.


end-of-my-little-rant.

"Flacking for Big Pharma

Drugmakers don't just compromise doctors; they also undermine top medical journals and skew medical research"

By Harriet A. Washington

June 3, 2011

https://theamericanscholar.org/flacking-for-big-pharma/#

Quotethe $310 billion pharmaceutical industry quietly buys something far more influential: the contents of medical journals and, all too often, the trajectory of medical research itself

Quote"All journals are bought—or at least cleverly used—by the pharmaceutical industry," says Richard Smith, former editor of the British Medical Journal, who now sits on the board of Public Library of Science (PLoS), a nonprofit open-access group publishing scientific journals that eschew corporate financing and are freely available online to the public.

QuoteWhen John Abramson, MD, author of Overdosed America: The Broken Promise of American Medicine, lectured at Harvard's 2008 Ethical Issues in Global Health Research course, he dismissed much of the content of contemporary U.S. medical journals as "little better than infomercials."

"How to avoid getting ripped off at the hospital

According to a doctor turned health care journalist."

Updated by Julia Belluz@juliaoftorontojulia.belluz@voxmedia.com   Apr 29, 2017, 9:42am EDT

https://www.vox.com/science-and-health/2017/4/11/15210656/hospital-charges-elisabeth-rosenthal

Quote"The American healthcare system is rigged against you," journalist Elisabeth Rosenthal writes in her new book, An American Sickness.

QuoteIt was clear to Rosenthal that profit came way ahead of patient care.

QuoteRosenthal documents how health care evolved from a patient care system to a multitrillion-dollar business one perverse incentive at a time — and, importantly, what patients can do to fight back.

-----------------------------------------------



"An American Sickness:  How Healthcare Became Big Business and How You Can Take It Back"

Elisabeth Rosenthal

Penguin Press,  New York,  2017


Page 183-184:

QuoteThe problem is that many charitable foundations no longer see themselves as funders of research for knowledge propelled by donor dollars to cure a disease, but instead as investors in new treatments.

Page 185:

Quotein recent years, patient disease groups and pharma have found common ground, as the industry wooed disease foundations and their members with corporate money, by sponsoring patient conferences and retreats and underwriting support groups and newsletters. It taught patients how to blog and hired them as disease spokespeople or "ambassadors."

Page 328:

QuoteThe Fate of Empires describes an age of decadence into which all great societies - Rome, Greece, Persia, Great Britain - descend before they finally fall for good.

-----------------------------------------------



Re: FDA


Aimmune FARE conflation


Aimmune, AR101 and CODIT: FARE


-----------------------------------------------



Tweeted by Allen Frances‏ @AllenFrancesMD,  1:30 PM - 16 Mar 2017:

QuoteMust read for all mental heath workers:
An expert's testimony: Corporate Corruption In Psychopharmaceutical Industry
http://inhn.org/controversies/barry-blackwell-corporate-corruption-in-the-psychopharmaceutical-industry-revised.html ...

-----------


"BARRY BLACKWELL: CORPORATE CORRUPTION IN THE PSYCHOPHARMACEUTICAL INDUSTRY"

Monday, 02.10.2017

http://inhn.org/controversies/barry-blackwell-corporate-corruption-in-the-psychopharmaceutical-industry-revised.html

QuoteJust as the NRA bribes politicians to obstruct legislation that would save lives and the NFL corrupts science to expose its players to brain injury, so Big Pharma uses its vast fortune to seduce and silence all opposition at the cost of injury and death to the patients who consume its products.

QuoteSo, we owe a great debt of gratitude to the investigative reporters for exposing what our scientific journals, professional associations and academic institutions have sometimes chosen to deny or conceal.

"Doctors And Hospitals Say 'Show Me The Money' Before Treating Patients"

By Michelle Andrews  | December 6, 2016   

http://khn.org/news/doctors-and-hospitals-say-show-me-the-money-before-treating-patients/

QuoteDoctors may refuse to dispense needed care before the payment is made, even as patient health hangs in the balance.

QuoteUnder the federal Emergency Medical Treatment and Labor Act (EMTALA), a patient who has a health emergency has to be stabilized and treated before any hospital personnel can discuss payment with them.

--------------------------------------------



"Locked On The Psych Ward"
"Lock them in. Bill their insurer. Kick them out. How scores of employees and patients say America's largest psychiatric chain turns patients into profits."

Posted on December 7, 2016, at 11:29 a.m.

Rosalind Adams

https://www.buzzfeed.com/rosalindadams/intake?utm_term=.qkREW00rM#.ucBPGddX8

Quote"Every patient care decision is made with the goal of furthering the best interests of our patients."

Quotedoctors barely met with patients

QuoteIf the person has insurance, why haven't they been admitted? If they don't have insurance, why are they still here?

--------------------------------------------




Re: Communication and/or negotiation skills

Quote from: LinksEtc on September 26, 2017, 07:58:18 AM
"11 Signs of Gaslighting in a Relationship

Gaslighting is a manipulation tactic used to gain power. And it works too well."

Posted Jan 22, 2017

https://www.psychologytoday.com/blog/here-there-and-everywhere/201701/11-signs-gaslighting-in-relationship

QuoteWhen dealing with a person or entity that gaslights, look at what they are doing rather than what they are saying. What they are saying means nothing; it is just talk. What they are doing is the issue.

"Lessons From a Professor's 10-Year Fight to Rein In Pharmaceutical Promotion"

The Chronicle of Higher Education

By Paul Basken   June 20, 2017

http://tinyurl.com/ybxjdumg

QuoteA while ago, the Annals of Internal Medicine published an article about how pharmaceutical ads were not accurate. Not ground-shaking news, but the journal lost a million dollars' worth of funding, and the editors were made to leave.

QuoteBut when you get in a clinical setting, there's totally a culture of abuse. It's like a hazing situation, where you go through it and then you feel like you're different and superhuman and part of this exclusive club, and you now get the license to abuse other people, other underlings. And patients ... forget it.

------------------------------------------------------



"Failure to warn: Hundreds died while taking an arthritis drug, but nobody alerted patients"

By Charles Piller   @cpiller

June 5, 2017

https://www.statnews.com/2017/06/05/actemra-rheumatoid-arthritis-fda/

Quote"One of the recurring criticisms of our drug safety system is that we rely upon the very companies that are so financially invested in a product's success to conduct the studies that explore safety concerns," Alexander said.

Quote"So much of the data is in the hands of people who are conflicted," he said. "We have to ask ourselves if the current system is in the interests of public health."

   

"Poor Patient Care at Many Nursing Homes Despite Stricter Oversight"

By JORDAN RAUJULY 5, 2017

https://www.nytimes.com/2017/07/05/health/failing-nursing-homes-oversight.html

QuoteYet, despite recurrences of patient harm, nursing homes are rarely denied Medicare and Medicaid reimbursement.

QuoteLast year, Maryland's attorney general sued the facility and its owner, Neiswanger Management Services, alleging that they evicted frail, infirm and mentally disabled residents "with brutal indifference" when their health coverage ran out or the facility had the opportunity to get someone with better insurance.

Quotea common strategy for shedding an unwanted reputation: changing the facility's name

-------------------------------------------------------


Doctors raked in cash to push fentanyl as N.J. death rate exploded

Updated on July 3, 2017 at 11:08 AM,  Posted on June 29, 2017 at 7:00 AM

http://www.nj.com/healthfit/index.ssf/2017/06/doctors_raked_in_cash_to_push_powerful_fentanyl_as_nj_death_rate_soared.html#incart_election

QuoteFrom 2013 to 2015, doctors in New Jersey were paid at least $1.67 million by pharmaceutical companies marketing various forms of fentanyl. In the same time period, fentanyl deaths in New Jersey increased from 42 in 2013 to 417 in 2015.

QuoteThey preyed on her. She had a learning disability. She put trust in what doctors said

-------------------------------------------------------



"Maine veterans given substandard care are told it's too late to sue"
By Edward D. Murphy
http://www.pressherald.com/2017/10/01/maine-veterans-given-substandard-care-are-told-its-too-late-to-sue/

QuoteA group of six say that Veterans Affairs fraudulently concealed the poor work of a podiatrist at the Togus VA hospital, causing years of needless pain. They say it withheld the findings to run out the clock on their ability to file a court challenge.

-------------------------------------------------------



"What You Don't Know About Your Doctor Could Hurt You"
By Rachel Rabkin Peachman
Last updated: April 20, 2016
https://www.consumerreports.org/cro/health/doctors-and-hospitals/what-you-dont-know-about-your-doctor-could-hurt-you/index.htm

QuoteThousands of doctors across the U.S. are on medical probation for reasons including drug abuse, sexual misconduct, and making careless—sometimes deadly—mistakes. But they're still out there practicing. And good luck figuring out who they are.

Quote"Doctors on probation should be required to tell their patients of their status."

QuoteThe board rejected the idea, saying it would put too much of a burden on doctors and damage the doctor-patient relationship.

"Silence: Everyday Betrayals of Research Participants"

Posted December 22, 2016 by Hilda Bastian in Science Communication

http://blogs.plos.org/absolutely-maybe/2016/12/22/silence-everyday-betrayals-of-research-participants/

QuoteBeing more open with research participants requires a culture, and power, shift. That may be the real problem here.

QuoteWhatever the reasons, not closing the loop with research participants properly and making the results publicly available as well, exploits participants' altruism and contributions.

------------------------------------------



http://www.alltrials.net/

-----


"The hidden side of clinical trials"
Sile Lane | TEDxMadrid
https://www.youtube.com/watch?v=-RXrGLolgEc&feature=youtu.be

-----


http://www.alltrials.net/news/the-story-of-the-campaign-thats-changing-the-world/

Quote
"We all agreed to participate in the trials in the belief that we were helping to improve knowledge and treatments. We now understand that many participants in trials have been misled. Current evidence shows that, overall, about half of all clinical trials have not been published and that this proportion has seen only a small improvement over the past few years. ... This is dangerous and expensive and it holds back good medicine. It is also a betrayal of our trust in clinical trial regulation, and the trust of the families of those patients who volunteer for trials having had a terminal diagnosis."

QuoteThis was the real start of the campaign, when patients stood up in public and said, "We want you to share our data, so get on with it."

-----


http://www.alltrials.net/supporters/supporters-organisation-list/

Sharing the results of all trials is in the best interest of patients. 

Do the patient/disease orgs you are involved with support AllTrials?  If they won't - my advice - don't support those patient orgs with your $$$ & time.

Just say "no" to participating in clinical trials if there is not a written commitment to publishing the results & data.

Patients have the power to change things, if we want to. 


-----


"Richard Smith: What should a patient ask before entering a clinical trial?"
October 21, 2016
http://blogs.bmj.com/bmj/2016/10/21/richard-smith-what-should-a-patient-ask-before-entering-a-clinical-trial/

QuoteThe first thing patients should ask, I suggest, is whether the trial will be published together with the full dataset so that everybody can access the results and reanalyse and reuse the data. If the answer is no to any part of the question then I suggest that the patient declines to participate.

QuoteResearchers are not used to being asked such questions, and some might be astonished—and even offended—to be asked, but patients have an important, even if so far largely unrealised, role to play in raising the relevance and quality of clinical trials and, indeed, all research.

"How Doctors Could Thwart Health-Care Reform

Over the years, doctors have behaved like a classic political interest group, and they've been very successful at it."

By James Surowiecki

December 19 & 26, 2016 Issue

https://www.newyorker.com/magazine/2016/12/19/how-doctors-could-thwart-health-care-reform

Quotemany doctors have also fought reform because it runs counter to their financial interests.

QuoteBut what's fascinating is that doctors are a powerful lobby in part because voters think of them as above the fray.

QuoteSuggesting that doctors might not always be disinterested policy advocates is a losing tactic.

---------------------------------------


"Price Transparency In Medicine Faces Stiff Opposition — From Hospitals And Doctors"

By Rachel Bluth  | July 25, 2017   

http://khn.org/news/price-transparency-in-medicine-faces-stiff-opposition-from-hospitals-and-doctors/

QuoteOne of the most stringent in a group of similar state laws being proposed across the country, Ohio's Healthcare Price Transparency Law stipulated that providers had to give patients a "good faith" estimate of what non-emergency services would cost individuals after insurance before they commenced treatment.

QuoteJerry Friedman, a retired health policy adviser for the Ohio State University Wexner Medical Center, said the opposition doesn't stem from genuine concern about patients but from a desire to keep the secret rates that providers have negotiated with insurers under wraps

QuoteYou don't realize how much [influence] special interests have in the process.

---------------------------------------


"Accreditors Can Keep Their Hospital Inspection Reports Secret, Feds Decide"
by Charles Ornstein,
Aug. 3, 11:31 a.m. EDT
https://www.propublica.org/article/accreditors-can-keep-their-hospital-inspection-reports-secret-feds-decide/?utm_campaign=bt_twitter&utm_source=twitter&utm_medium=social

QuoteReversing course, federal health officials withdrew a proposal that would have required private accrediting organizations to publicly release reports of problems they found in health care facilities. Accreditors and hospitals had panned the idea; consumer advocates and business groups supported it.

Quoteconsumer groups, business alliances and a group representing health care journalists were supportive, saying consumers deserve more information about the quality of hospitals

"Conflicts of Interest for Patient-Advocacy Organizations"

Matthew S. McCoy, Ph.D., Michael Carniol, M.B.A., Katherine Chockley, B.A., John W. Urwin, B.S., Ezekiel J. Emanuel, M.D., Ph.D., and Harald Schmidt, Ph.D.

N Engl J Med 2017; 376:880-885March 2, 2017DOI: 10.1056/NEJMsr1610625

http://www.nejm.org/doi/full/10.1056/NEJMsr1610625#t=article

QuotePatient-advocacy organizations are nonprofit groups whose primary mission is to combat a particular disease or disability or to work toward improving the health and well-being of a particular patient population.1

QuoteThis study shows that among 104 of the largest U.S.-based patient-advocacy organizations, at least 83% received financial support from drug, device, and biotechnology companies, and at least 39% have a current or former industry executive on the governing board.

----------------------------------------------


"More Than 80 Percent of Patient Groups Accept Drug Industry Funds, Study Shows"

By KATIE THOMASMARCH 1, 2017

https://www.nytimes.com/2017/03/01/health/patient-groups-drug-industry-money.html?mcubz=0&_r=0

Quote"Patient advocacy organizations are driven by their missions — putting patients first," said Marc M. Boutin, the chief executive of the National Health Council, an umbrella group for patient-advocacy groups.

QuoteLast summer, patients and their families loudly protested the skyrocketing price of EpiPens, though the movement gathered steam on social media rather than through traditional patient-advocacy groups.

----------------------------------------------


"How Parents Harnessed the Power of Social Media to Challenge EpiPen Prices"

By Tara Parker-Pope
August 25, 2016 9:28 am

https://well.blogs.nytimes.com/2016/08/25/how-parents-harnessed-the-power-of-social-media-to-challenge-epipen-prices/

QuotePatient advocacy groups, which typically are vocal on all issues related to food allergies, have been largely silent.

QuoteSince 2011, Mylan says, it has provided more than $10 million in funding for "educational efforts," such as sponsorships and grants, and has received corporate citizen awards from FARE and the Allergy & Asthma Network.

----------------------------------------------



"When a Drug Coupon Helps You but Hurts Fellow Citizens"

Austin Frakt 

THE NEW HEALTH CARE SEPT. 25, 2017

https://www.nytimes.com/2017/09/25/upshot/when-a-drug-coupon-helps-you-but-hurts-fellow-citizens.html

QuoteThough such coupons assist patients, they do nothing for insurers, for whom generics are still a better deal. And that's the problem. By encouraging patients to switch from generic to brand drugs, coupons effectively impose higher costs on insurers. That ends up increasing premiums, and not for any particularly good reason.

----------------------------------------------



"Pharma Money Reaches Guideline Writers, Patient Groups, Even Doctors on Twitter

A series of studies published today documents the vast conflicts of interest in medicine. The way we think about disease "is being subtly distorted" by financial ties, the authors of an editorial write."

by Charles Ornstein,
Jan. 17, 12 p.m. EST

https://www.propublica.org/article/pharma-money-reaches-guideline-writers-patient-groups-doctors-on-twitter

QuoteMost organizations reported having a conflict-of-interest policy, but a much smaller percent said that their groups had policies for public disclosure of those relationships.

QuoteA preliminary analysis of tweets by these doctors, not yet published, has shown that "a sizable percentage are tweeting about drugs that they have specific ties to," oncologist Vinay Prasad, one of the authors of the study and an assistant professor of medicine at Oregon Health & Science University, said in an interview.

----------------------------------------------


"How Drug-Company 'Benevolence' Silences the Sick"

by Joe Nocera

‎April‎ ‎18‎, ‎2017‎ ‎10‎:‎00‎ ‎AM

https://www.bloomberg.com/view/articles/2017-04-18/valeant-drug-company-benevolence-and-the-silence-of-the-sick

QuoteTo the delight of Wall Street, Valeant had built its business by buying companies with drugs that were the gold standard for a particular disease, and then raising prices relentlessly.

QuoteWe're working very closely to try to make a difference in patients' lives, and that's exactly what we think our effort with the Wilson's Disease Association is meant to do.

QuoteI am really bothered that Valeant is calling us 'partners' in order to boost their stock price

----------------------------------------------



Food allergy group with ties to EpiPen maker says no to future donations

By Ike Swetlitz @ikeswetlitz and Ed Silverman @Pharmalot

September 9, 2016

https://www.statnews.com/pharmalot/2016/09/09/epipen-mylan-food-allergy/

Quote
A major food allergy advocacy group said this week that it would stop accepting donations immediately from drug companies selling epinephrine auto-injectors until there is "meaningful competition" in the market.

QuoteDr. James Baker, would not specify the exact amount of money that Mylan has donated to FARE

----------------------------------------------


"Outcry Over EpiPen Prices Hasn't Made Them Lower"
Charles Duhigg
https://www.nytimes.com/2017/06/04/business/angry-about-epipen-prices-executive-dont-care-much.html?_r=0

QuoteHe raised both his middle fingers and explained, using colorful language, that anyone criticizing Mylan, including its employees, ought to go copulate with themselves. Critics in Congress and on Wall Street, he said, should do the same. And regulators at the Food and Drug Administration? They, too, deserved a round of anatomically challenging self-fulfillment.

Quotewe put people and patients first

----------------------------------------------



The food allergy patient community should not only think about pharma influence, but also food industry influence imo ...

for example, this thread:

Re: sesame seeds labeling: US specific (laws, loopholes)

Everywhere I look, there is talk of "patient-centered", our best interest, our well-being ... but I think we (as patients) have to become wiser & more critical regarding who we trust and work with ... and more assertive in having our interests represented and our needs met.