Patient Advocacy Groups Betray Consumers for Pharma Money

Researchers detail how patient advocacy groups have moved away from protecting consumers and toward safeguarding Big Pharma.

Samantha Lilly
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1976

In a new article in the Journal of Bioethical Inquiry, researchers reveal how grassroots patient advocacy groups began to fail consumers after taking money from pharmaceutical companies. The authors, led by Sharon Batt, a bioethicist from Dalhousie University in Canada, argue that pharmaceutical industry funding of consumer advocacy groups altered the goals and research priorities of these organizations. Batt and her co-authors, Judy Butler, Olivia Shannon, and Adriane Fugh-Berman, write:

“Accepting industry money would result in vulnerable patients being susceptible to the parroting of certain marketing messages that distorted scientific evidence, with the potential to cause needless suffering, misplaces hope, premature deaths, and misspent funds.”

Major pharmaceutical companies, such as Eli Lilly, Pfizer, Biogen, and Johnson and Johnson, among others (collectively and colloquially known as Big Pharma), have repeatedly manipulated independent researchers, the non-entrepreneurial medical community, and the general public. For instance, past research has documented how Eli Lilly limited the efficacy of clinical trials, exerted considerable political influence through lobbying and campaign contributions, and spent millions of dollars paying criminal and civic settlements to escape punishment for fraudulent marketing practices.

Utilizing a social history approach, Batt and colleagues chose to look back in time to contextualize the growing influence of Big Pharma over patient advocacy groups. In their article, “Pharmaceutical Ethics and Grassroots Activism in the United States: A Social History Perspective,” they review how grassroots organizations that had previously kept pharmaceutical companies at bay have since become co-conspirators, allowing pharmaceutical company influence over research and public perception to flourish unchecked.

These grassroots patient advocacy groups initially made it their responsibility to debunk misleading studies and to hold pharmaceutical companies accountable so that safe drugs could be created in the interest of the consumer. A direct result of their activism included both the creation of the Food and Drug Administration (FDA) in 1927 and the creation of countless disease-specific advocacy groups for women’s health and AIDS. Later, these groups expanded to mental health care, like the National Alliance on Mental Illness (NAMI) and the Depression and Bipolar Support Alliance.

According to the authors, in the early 1990s, the pharmaceutical industry began to influence independent consumer advocacy groups with monetary incentives. In the article, the authors point to the work of the investigative magazine Mother Jones, which reported that “between 1996 and mid-1999, eighteen drug companies gave The National Alliance on Mental Illness $11.72 million, with the largest amount coming from Eli Lilly, the manufacturer of Prozac (fluoxetine).”

These monetary incentives lead patient groups to censor critiques of high drug prices. Instead, these groups switched their messaging to argue for expanded access to expensive, minimally effective treatments. Groups like NAMI, which receives three-quarters of its funding from the pharmaceutical industry, even opposed the FDA ‘black box’ warnings on serotonin reuptake inhibitors that inform young patients that the drug might increase their risk of suicide.

A historical analysis reveals that patient advocacy groups today operate differently than they did in the past. The authors attribute this to the strategic funding and financial support given to the groups by Big Pharma.

These companies argued that activists and capitalists need not be enemies, but could work together toward the shared goal of increased drug access. Indeed, NAMI’s response to critics has often been that the purposes of the drug companies and their patient advocates “overlap” and that they are “natural allies” in their mission to expand availability and access to drugs that help the mental wellbeing of patients across the United States.

However, Batt and her colleagues argue that a social-historical analysis of these groups makes it clear that the “natural allies” catchphrase is a partial truth that advocacy groups desperately need to be true to sustain the pharmaceutical investments that make up a majority of these groups budget.

The authors argue that patient advocacy groups should reprioritize listening to patient experiences, challenging industry agendas, and demanding lower prices on lifesaving drugs like insulin. They conclude:

“Consumers and industry do not have common goals. America’s public health movement is ailing; a movement to reclaim it is desperately needed.”

 

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Batt, S., Butler, J., Shannon, O., & Fugh-Berman, A. (2020). Pharmaceutical ethics and grassroots activism in the United States: A social history perspective. Journal of bioethical inquiry, 1-12. (Link)

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Samantha Lilly
Samantha Lilly brings their background in philosophy, bioethics, and social justice to their work as a critical suicidologist, with the belief that suicidology, at its best, is social justice work. Before beginning a Ph.D. in Health in Social Science at the University of Edinburgh, Sam was awarded a Thomas J. Watson Fellowship. Their project, “Understanding Suicidality Across Cultures,” gave them the privilege of working alongside ethicists, scholars, and rights advocates in the Benelux countries, Lithuania, Argentina, Aotearoa, and Indonesia. Sam’s current research is dedicated to bringing feminist and decolonial methodologies to suicide prevention.

35 COMMENTS

  1. Nothing like a Law Centre acting as ‘advocates’ who receive funding from the State and act against the interests of the people they are supposed to be representing, and protecting from human rights abuses. Don’t bite the hand that feeds, and if that means looking the other way while people are being tortured and killed, ask for a raise. Oh you did, nice new offices you got Councellor.

    In fact the Principle of said Law Centre made it clear that the law did not require the vacant position of Chief Psychiatrist be filled by a psychiatrist, it could be a ‘human rights lawyer’ (not unlike herself). You scratch my back Minister, and she will stab the citizens if allowed to corrupt that office. Torture, kidnapping and convenience killings all in the “spirit of the Act” eh?

    Funny that she could understand the complexities of the Mental Health Act in this regard, and yet could not understand how the protection of “suspect on reasonable grounds” operated to protect their clients when it was put to her? The Principle of a Law Centre who doesn’t understand a burden of proof?

    The funding should be removed and the ‘advocacy service’ scrapped. Better no service than one which is aiding and abetting in misconduct by public officers.

    How someone could sit across a table from a person asking for your help after being tortured and kidnapped knowing that you were going to assist the torturers/kidnappers to conceal their conduct, ……. I look back and feel sick. Especially knowing that there are so many others who sought help, and have quite likely been subjected to the same unethical conduct by these same lawyers. The problem being that they simply say to you “there may be things I can’t tell you” and don’t mention it is that they are going to assist the criminals to conceal their wrongdoing.

    It would however explain that many of the complaints and anger labelled as being ‘illness’ may actually be as a result of the misconduct of these people who are actively engaging in ‘gaslighting’ of victims, and claiming the moral high ground as ‘advocates’ when what they are is organised criminals receiving funding from the State. Maybe that’s why they sacked the lot of them, who knows. The sin being getting caught, not that you did it.

    Gee I wish I could get an ethical person to examine the evidence I have, rather than someone with a conflict of interest or who runs away when police threaten their families.

  2. “Consumers and industry do not have common goals.” No doubt. Industry wants to profiteer off of making consumers sick for profit. Consumers want to end psychiatric stigmatization – since that’s nothing but defamation with “invalid” diseases – and end forced psychiatric drugging, since that is the epitome of a human rights abuse.

  3. It’s too late to reverse this, so I’m not going to waste time venting about how sold out it makes me feel.

    Instead I wonder if there is a way we can devise to help prevent further and future buyouts and buy-ins?

    How do we teach integrity and self-protection?

    How do we protect ourselves from people with profit agendas from taking advantage of our trauma in the few spaces we have to be real and connect?

    How do we keep the desperation for real escape from psychiatry which is easier with money, from clouding our own judgement should an offer “too good to refuse” come along?

    Should money exchange for services, therapy or alternatives be immoral in, or at least separate from, social justice movements fighting psychiatry and oppression?

    How do we keep from repeating the patient role even here? What do I have to do to be equal? To not be the “sick” one here? Hide? Become the therapist?

    Sometimes professionals and researchers write blogs saying the labels are quackery, you are not sick, and then sell a service for “fixing” me in the very next sentence? Either I’m equal, whole, worthy, or I’m not. Which is it?

    How do healers for hire decide they are healed enough to heal another? What happens when you find out your expensive healer is sicker than you?

  4. Thanks so much for reporting the relationship between pharma and groups like NAMI.
    In 2011, I witnessed this. A local church had discussions between services. The subject matter was applying Christian principles in real life. I visited and witnessed the following.
    The waiting parishioners were seated in a semi circle. Then a line of people filed in and took places behind each chair. The people from the line began hushedly speaking to the backs of the seated people saying;: “Get out while you can, they are here to hurt you….”.
    Then the speakers left and a person said that this is what every psychotic person hears all of the time. According to the speaker, most families have these “hearing voices” people in their midst and NAMI is there to see that these poor people are medicated correctly.
    The clergy enthusiastically agreed that anyone who does not fit in “deserves” medication and that remaining at home is not to be tolerated. The clergy were so very uninformed and enthusiastic about labeling and about ” medication”.
    So I looked up NAMI. They actually said that they were available to write sermons! Their expressed goal was to infiltrate every institution including public schools. This seemed to be a point of pride.
    I witnessed this, and this still scares me these many years later. The attitude of force was overwhelming.

    • I had to leave my childhood religion twice, since one cannot stand against child abuse, or the systemic child abuse covering up psychiatrists or psychologists today. Without having a pastor sick a child abuse covering up psychologist, wanting to poison or steal all your money from you, onto you.

      Thankfully, an ethical pastor of another religion had already explained to me that these systemic crimes of the ELCA pastors were “the dirty little secret of the two original educated professions.” So I was able to make that second psychologist, and the now systemic child rape covering bishops of his religion, look like morons by pointing out these links.

      https://www.indybay.org/newsitems/2019/01/23/18820633.php?fbclid=IwAR2-cgZPcEvbz7yFqMuUwneIuaqGleGiOzackY4N2sPeVXolwmEga5iKxdo
      https://www.madinamerica.com/2016/04/heal-for-life/
      https://books.google.com/books?id=xI01AlxH1uAC&printsec=frontcover&source=gbs_ge_summary_r&cad=0#v=onepage&q&f=false

      It is truly a shame that the mainstream religions bought into the systemic child abuse covering up crimes of the so called “mental health” profession. And have turned from being Holy Bible believing, God trusting people, into psychologist trusting, DSM “bible” thumping lunatics.

      “The clergy were so very uninformed and enthusiastic about labeling and about ‘medication.'” The second ELCA pastor I dealt with was not “uninformed,” since I’d given him Whitaker’s “Anatomy of an Epidemic.” But he chose to not discuss a book I’d given him with me. And instead sicked a stupid, delusions of grandeur filled, psychologist onto me.

      Absolutely, the sick, twisted, scientifically “invalid,” systemic child abuse covering up psychological and psychiatric industries have infiltrated “every institution including public schools” and the religions. And the systemic child abuse covering up psychological and psychiatric industries are appalling industries. Since systemically covering up child abuse is illegal behavior.

      Yes, Sam, we’re “living in a world of complete insanity.”

    • NAMI actually had a bunch of people slip in to do that? Okay. When I first read I thought it was gaslighting. Now it looks like was just an advertisement. “This is what having ‘schizophrenia’ feels like.”

      I didn’t know NAMI was supposed to be a patient’s advocacy group. I belonged to it (as a mascot) for some years. It was supposed to be about helping us and reducing the discrimination or stigma NAMI created with other ad campaigns to begin with.

      They liked to hear the voices of “high functioning” people like me. As long as I praised my life saving medications and the benevolent doctors who could do no wrong.

  5. The real consumer here is psychiatry, it eats people alive.

    “These monetary incentives lead patient groups to censor critiques of high drug prices.”

    Maybe I’m misunderstanding something here but if the goal here is just to critique high drug prices, the groups already were fundamentally flawed. Critiquing the high cost of arsenic pretty well misses the point. Not a surprise then that they can be bought out by pharma.

  6. I believe that two important pieces were left out of this article.

    Please correct me if I am wrong.

    Mental Health Association can be included as one of these types of advocacy groups funded by Big Pharma, along with NAMI. Both types vary, depending on locality, as to their support of the medical model.

    Also, it is worth noting that executives of Big Pharma have said that these groups produce more business than advertising.

  7. Good to see some academic backing for this long-known truth.
    Industry-backed “consumer advocacy” groups are everywhere now. And they’re a total fraud.
    There are so many of these groups in so many fields that the internet has become seriously polluted with them. I try to find true data on the internet, and it is very difficult because of these groups. I wish they could be banned.

    • l_e_cox.
      Consider how much is online. It does not bode well for biz if one is competing with batteries or toilet paper.
      So all in all, it means little except that it is a religion. That is all.
      One really can’t be bothered disproving them. That is easy, because they have no “science”. The best thing we can do from here on in is to educate.
      They are appealing to people who don’t ‘think’ about things in depth until something happens and then the aha lights go on. Exactly like a fundamental zealot dogma.
      It is tantalizing for people to see a “medicine” lol.
      But we really have to wake people up to the untruths of the base beliefs of psychiatry. And how in the world would ANY health system ever be abusive and persecute people.

      • Yes, Sam. Telltale phrases like: “The experts say” and “Get the help you need” have no real meaning, and they function as hashtags indicating thoughts that can be medicated for profit. Mind-control for financial gain and perverse pleasure and false imprisonment are accepted as “for your own good”. This replaces personal rights and civil liberties with the self-identified Psyche industry’s will.

        The issue is not mental-health rights, it is Constitutional rights guaranteed every citizen. The belief that tights can be ignored on the basis of “We know what’s good for you” is outrageous yet the idea lives and lives in modern medical practice.
        Physicians have been mining for mental illness for decades.. Now the accusation is equal to conviction. Now where, in history, did the accusation,alone, mean guilt? It’s the ultimate thought crime.

        • Your point is very well taken! There is no such thing as “rights for the mentally ill,” they are the same rights everyone else has. The question is why they are not regualrlly afforded to those labeled as “mentally ill,” and why the failure to enforce them doesn’t seem to bother people too much. It is an issue of prejudice and discriination, not of a lack of “rights” under the law.

        • Exactly Bananas and Steve,
          The very notion that “human rights” is an issue at all, should make politicians act and act swiftly. It should make the public act swiftly since they or their loved ones can easily be affected.
          I think you called it what it really is about. “constitutional rights”.
          I think the people that know what is going on, have an obligation to get the word out to anyone who will listen.
          We need to be much more outraged, without the silencing methods they use. We should not be frightened of being called “radical” or “fringe”. Those are words to minimize abuse. To put the crazy label on people who dare to speak out. It is such an old tool, it is embarrassing that educated people stoop to these levels.

          • Agreed!
            I’d emphasize a detail. This is a constitutional liberties or civil liberties issue. “Civil Rights” are essential but not identical to civil liberties. Civil liberties are addressed and assured in our Constitution. Specific rights are derived from rights listed in The Bill of Rights. The fourth and fourteenth amendments protect all citizens. All citizens have the right to their own bodies. Where is the exception for those accused of “suffering from mental illness”?
            There is no exception in the Constitution, but there is in actual practice.
            The accusation of being mentally ill is, in practice, equal to being found guilty without having been found guilty by a jury of peers?

          • Good points people (Sam, Steve, and Bananas)

            We don’t have a Bill of Rights in Australia. Might explain why the systematic violation and large scale human rights abuses are going on without anyone even noticing. (I look forward to the response from China regarding the finger pointing [about arbitrary detentions] and saber rattling by our Prime Minister. Though they will no doubt conceal their strengths and bide their time)

            Mind you, I often wondered about the situation in WW2 and the fact that it took so long to liberate the camps. Or was that simply a side effect of the battle against German expansionism? No one seemed to notice what was happening there for quite some time is my point (or did they and simply didn’t care?).

            And of course complaining about human rights violations here is a dangerous thing to do, given the ‘protections’ provided by the State to these religious zealots in mental health.

  8. All civil rights and liberties are out the window when you get a label. Life is over as people knew it. Even if they took it away, the damage is done, unless one can forget.
    There is no “law”. I’ve said it before. Our law and religion IS psychiatry. It really is just a morphed fundamentalist religion. And people love believing in something.

    • Imagine if you did to a citizen what you can do to a ‘patient’ sam.

      In fact there is a reference to such a story in the Christian Bible. Saul of Tarsus beaten for being a Christian, but also a Roman. And the magistrates? Oh dear, what have we done, ya can’t go around beating up on Roman citizens, they have rights you know, the same as us. And if we allow you to beat him up, were basically saying you can beat us up too. Bah, kill him and make it look like a suicide. we’ve got to find a better way…… I know, we can call it medicine, and make it exempt from the law. Doctor needs to be able to treat their patients, a few changes in the wording and …..

      • Psychiatry cannot ever refer to their subjects as “patients”. I’m glad you made that point Boans.
        It was a brilliant idea to make it “medical” and then just keep running with it, no matter how stupid it’s starting to look.
        I hope the new kids in school have more pride and self confidence than to become a judgmental ass for a living. Crude and so old. People’s brains are meant for more logic, more advanced thinking. They are meant to create, not use the same shit that was started by bored old farts. It is chimp like to sit and stare at things we don’t understand. Even chimps get bored and start picking the lice out of their buddie’s hair.

        • The psychiatric industry has its counterpart on Mount Olympus. Each god has a character issue, and each mental thing has a name just as the gods do. These gods have temples devoted to them. There financial sacrifice is made. We may choose from the god of depression, the god of oppositional defiant disorder, the god of psychosis, hey how about the god of suicidal ideation? Each god of a mental illness has a preferred offering. Prozac, Depakote , Seroquel can be bought at the temples and the financial tender goes to the god or really the god’s representative, the mental health worker.
          Okay I said: “financial sacrifice”, but now human sacrifice seems even more fitting. The mind is taken while the vacant body roams the Earth.

          • From Xenophon’s memorabilia an apologia of his teacher Socrates written after 371BC. Socrates sentenced to death for driving everyone up the wall with his questioning, failing to recognise the gods and corrupting the youth.

            “But no one ever saw Socrates doing, or heard him saying, anything impious or unholy. For he did not converse about the nature of all things in the way most of the others did-examining what the sophists call the cosmos: how it is, and which neces-sities are responsible for the coming to be of each of the heavenly things. But he even showed that those who worry about things of this sort are foolish. First, he examined whether they came to worry about such matters because they held that they already knew the human things Memorabilia sufficiently,or whether they believed that they were acting prop-erly in disregarding the human things and in examining the divine things (daimonia). And he wondered whether it was not visible to them that it is impossible for human beings to find these things out, since he thought that even those who most pride themselves on speaking about them do not hold the same opinions as one another but are disposed toward one another like madmen. For, among madmen, some have no terror even of what is terrible, while others are frightened even by what is not frightening; and some are of the opinion that it is not shameful to do or say anything whatsoever, even in a crowd, while others are of the opin-ion that one should not even go out among human beings; and some honor neither temple nor altar nor any other divine thing (theios), while others behave piously toward even rocks and chance pieces of wood and beasts; and, among those who are anxious about the nature of all things, some are of the opinion that being is one thing only, and others that it is an infinite multitude; and some that everything is always moving, and others that nothing ever moves; and some that everything comes to be and perishes, and others that nothing ever comes to be or perishes.”

  9. Streetphotobeing,
    Beautiful and how true. How much we could have learned from those put to death.

    It took the catholic church 300 years to admit Gallileo was right, and even then, it was only because they were no longer the power they once were. Psychiatry exists through power, not knowledge. Creating a belief within and around prejudice against certain people was the ticket to appeal to the ignorant masses.

  10. In spring of 2011, I attended a lecture series covering the authority thing. The speaker claimed that it was the Great Plagues’ effect that so markedly reduced the influence of the Roman Church. It seems that Galileo was born about three hundred years before the Third Wave of Bubonic Plague. This is consistent with what you said of the time that passed before the coast was cleared for rational thought.

    I can be corrected though. However, I never understood how “I read it in a book” was a better basis for belief than scientific method.. There is a lurking resemblance, here, to the works of “key psychiatric opinion leaders” and the question: “WTF, where is the evidence?”

    Must we wait for three hundred more years?

    • That was my point lol.
      We might even be waiting a lot longer IF people keep believing in “science” in the way it is being used in psychiatry. In psychiatry they “invented” the problem first, and use “science” as the crutch to pretend to be “looking” for “something”.
      Psychiatry did not invent the personal issues of each person, however, they did invent that they were “illnesses”. Nothing even close to science went into that. It was pure speculation based on prejudice.
      So it was based on a “normal”.
      And it might be the most abnormal thing to think of such things as “normal”. There is a hell of a lot of stuff in space that would not “act normal” according to astronomers, or physicists, by those that have a limited view, their own limited minds. They would also not however be dumb enough to “treat” space.

  11. It’s incredible that adults get these invented labels, let alone toddlers and that this EVEN happens AT ALL. It’s amazing what one can sell to the public. Granted I think that most people just go about their lives and don’t really “think” about what goes on in nursing homes, psych wards, a shrinks office, or the bedside mannerism of many people in hospital, without loved ones by their side.

  12. To top the medical abuse of toddlers and babies, parents who refuse medical practitioners’ decisions to administer these psychoactive drugs to their children have been threatened with the charge of child abuse. I have no idea how prevalent this threat is; I rely on personal messages. However, one case is one case too many.

    This is a new take on: “As the twig is bent, the tree’s inclined”. Do not bend the little twig in my care!

  13. “parents who refuse medical practitioners’ decisions to administer these psychoactive drugs to their children have been threatened with the charge of child abuse.”

    Oh, that old mental illness Munchausens by Proxy? Disagree with the doctor is obviously a mental illness, and it can include Folie a Deux too, where both parents are insane due to one going mad and it spreading like a virus to the other. This is not limited to cases where children are ‘taken’ by mental health though. There was one case run through the courts here regarding a child suffering from a rare form of cancer whose parents wished him to be returned home to die with dignity, but the doctors had other designs. I note there is no information available regarding that case that I can locate to post about it anymore.

    I think Dr Hickey posted some articles here about the case of Justine Pettelier? Personally I think that some of these cases may fall into the category of medical kidnappings for research but……. you’ll never be able to prove it. Certainly not when your State is authorising the distribution of fraudulent documents to legal practitioners (euphemistically called “editing”), and not a soul will stand up and contest those offences.

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