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Consumer advocacy groups are mostly funded by Big Pharma, according to new research
An article in Journal of Bioethical Inquiry raises questions about the goal of these advocacy groups.
- Two-thirds of American consumer advocacy groups are funded by pharmaceutical companies.
- The authors of an article in Journal of Bioethical Inquiry say this compromises their advocacy.
- Groups like the National Alliance on Mental Illness act more like lobbyists than patient advocates.
In 1905, the muckraking journalist, Samuel Hopkins Adams, published an 11-part series on patent medicines for Collier's. Packaged as "The Great American Fraud," Adams pointed out that many patented medicines were causing harm to consumers. His reporting helped lead to the Pure Food and Drug Act of 1906.
This was a different era in journalism. In 1906, Upton Sinclair published "The Jungle," which also influenced the above congressional action (as well as the passage of the Meat Inspection Act). While President Roosevelt decried Sinclair as a socialist crackpot, he relented after reading the book and appointed inspectors to investigate the meatpacking industry.
Imagine that: A president who reads and even acts on criticism of his administration.
During this era of eye-opening exposés, consumer advocacy groups demanded better public health programs and governmental intervention in health care. As a new research article published in the Journal of Bioethical Inquiry points out, these women-founded and led programs pushed back against junk science and lack of oversight.
While the article details essential work female groups performed during the last century, it concludes with startling data regarding the corporate takeover of modern advocacy organizations by pharmaceutical lobbyists. The takeover was intentional.
Advocacy groups were founded with the best of intentions. As the authors—Sharon Batt, Judy Butler, Olivia Shannon, and Adriane Fugh-Berman—write,
"Some women's clubs moved this knowledge to the level of 'citizen science,' pushing to establish local health boards, then demanding the boards investigate the problems they documented. The women also provided fodder for muckraking journalists, bringing sensational cases to the attention of local newspapers and women's publications to be investigated and exposed."
The Corruption That Brought Prozac to Market — Robert Whitaker, Journalist
Consumer-oriented groups gained steam over the ensuing decades. Their efforts helped inspire the 1938 Food, Drug, and Cosmetic Act after over 100 people (mostly children) died from a sanctioned drug, Sulfanilamide. If not for the hard work of these advocates, this case might have been overlooked.
Early efforts also focused on the food industry, which was increasingly using chemical preservatives. The origin of Consumer Reports can be found in the consumer advocacy movement. Both the food and drug industries were getting a free pass to experiment on citizens with few repercussions.
These movements provided a social foundation for important advocacy work in the second half of the century. Female-led groups evolved to focus on women's reproductive rights, AIDS, and mental health. As the authors write, these groups struck a balance between working with and against current trends. Sometimes you need to craft legislation with officials; at other times, you have to rage against the machine with everything you've got.
Advocacy marked an important turning point in public health (and culture in general). These groups were tired of placating to a medical model that treated the male body as the standard. This wasn't limited to anatomy. As I wrote about last week, a high-profile 1970s-era conference about the role of women on Wall St featured no women on stage. You can imagine what reproductive health looked like during that time.
Advocacy groups made real impact in public health. Then the money began pouring in.
"These groups were funded largely by individual donations with some foundation support, but in the late 1980s, newer women's health groups moved to professionalize, effectively splitting the women's health movement."
A number of groups resist corporate ties to this day, such as the National Women's Heath Network and Breast Cancer Action. Too often, however, groups argue that their existence depends on corporate funding. This can lead to uncomfortable compromises.
An estimated two-thirds of patient advocacy groups in America accept funds from the pharmaceutical industry. Pharma companies gave at least $116 million to such groups in 2015 alone.
For example, over a three-year period, the National Alliance on Mental Illness (NAMI), which was founded by two mothers whose sons suffered from schizophrenia, received nearly $12 million from 18 pharmaceutical companies. The largest donor was Prozac manufacturer, Eli Lilly. By 2008, three-quarters of NAMI's budget was funded by the pharmaceutical industry. It gets worse:
"An Eli Lilly executive was even 'on loan' to NAMI, paid by Eli Lilly, while he worked out of the NAMI office on 'strategic planning.'"
A customer waiting for his medication at the Headache Bar in a pharmacy in Sydney, Australia. Among the items on sale are 'Paigees with Chlorophyll' and Alka Seltzer on tap.
Photo by Dennis Rowe/BIPs/Getty Images
This influx of cash skews public understanding of drugs. It also influences advocates to overlook real problems caused by pharmaceutical interventions, especially when it comes to mental health.
For a real-world example, consider how Xanax came to market. As journalist Robert Whitaker explains, an initial study was conducted to determine efficacy in treating panic attacks. After four weeks, Xanax was outperforming placebo, which is common with benzodiazepines over short-term usage. But it wasn't a four-week study; it was a 14-week study.
At the end of eight weeks, there was no difference in efficacy between Xanax and placebo.
At the conclusion of the study after 14 weeks, the placebo outperformed Xanax. By a lot.
Why is Xanax still prescribed for panic attacks? Because the pharmaceutical company, Upjohn, only published the four-week data. The 14-week data was not in its favor. Nearly forty years later, over 25 million Americans receive a prescription despite its long list of side effects and addictive profile.
As the authors note, many consumers are not aware of how advocacy groups are funded.
"An international study of groups in the United States, United Kingdom, Australia, Canada, and South Africa found that the extent of relationships with industry was inadequately disclosed in websites that addressed ten health conditions: cancer, heart disease, diabetes, asthma, cystic fibrosis, epilepsy, depression, Parkinson's disease, osteoporosis, and rheumatoid arthritis."
That's a tangled web of relationships. Pharmaceutical industry funding negatively impacts the work advocacy groups should be focused on: protecting us. NAMI, for example, claims that as a "natural ally" to the pharmaceutical industry, it helps consumers access "all scientifically proven treatments." When the industry ignores evidence of long-term damage caused by its treatments, you have to wonder what's being advocated.
Although, as the authors conclude, that question is easy to answer.
"Instead of drawing insights from patient experience to set organizational agendas and challenge industry agendas, today's groups are silent on high prices and drug harms, oppose efforts to regulate these basic rights, and demand access to drugs that challenge the safety and effectiveness."
- Cancer drugs most profitable for Big Pharma - Big Think ›
- The superbug crisis: Politics, profit, and Big Pharma - Big Think ›
- How to Incentivize Big Pharma to Create Cheaper Drugs - Big Think ›
Innovation in manufacturing has crawled since the 1950s. That's about to speed up.
Health officials in China reported that a man was infected with bubonic plague, the infectious disease that caused the Black Death.
- The case was reported in the city of Bayannur, which has issued a level-three plague prevention warning.
- Modern antibiotics can effectively treat bubonic plague, which spreads mainly by fleas.
- Chinese health officials are also monitoring a newly discovered type of swine flu that has the potential to develop into a pandemic virus.
Bacteria under microscope
needpix.com<p>Today, bubonic plague can be treated effectively with antibiotics.</p><p style="margin-left: 20px;">"Unlike in the 14th century, we now have an understanding of how this disease is transmitted," Dr. Shanthi Kappagoda, an infectious disease physician at Stanford Health Care, told <a href="https://www.healthline.com/health-news/seriously-dont-worry-about-the-plague#Heres-how-the-plague-spreads" target="_blank">Healthline</a>. "We know how to prevent it — avoid handling sick or dead animals in areas where there is transmission. We are also able to treat patients who are infected with effective antibiotics, and can give antibiotics to people who may have been exposed to the bacteria [and] prevent them [from] getting sick."</p>
This plague patient is displaying a swollen, ruptured inguinal lymph node, or buboe.
Centers for Disease Control and Prevention<p>Still, hundreds of people develop bubonic plague every year. In the U.S., a handful of cases occur annually, particularly in New Mexico, Arizona and Colorado, <a href="https://www.cdc.gov/plague/faq/index.html" target="_blank">where habitats allow the bacteria to spread more easily among wild rodent populations</a>. But these cases are very rare, mainly because you need to be in close contact with rodents in order to get infected. And though plague can spread from human to human, this <a href="https://www.healthline.com/health-news/seriously-dont-worry-about-the-plague#Heres-how-the-plague-spreads" target="_blank">only occurs with pneumonic plague</a>, and transmission is also rare.</p>
A new swine flu in China<p>Last week, researchers in China also reported another public health concern: a new virus that has "all the essential hallmarks" of a pandemic virus.<br></p><p>In a paper published in the <a href="https://www.pnas.org/content/early/2020/06/23/1921186117" target="_blank">Proceedings of the National Academy of Sciences</a>, researchers say the virus was discovered in pigs in China, and it descended from the H1N1 virus, commonly called "swine flu." That virus was able to transmit from human to human, and it killed an estimated 151,700 to 575,400 people worldwide from 2009 to 2010, according to the Centers for Disease Control and Prevention.</p>There's no evidence showing that the new virus can spread from person to person. But the researchers did find that 10 percent of swine workers had been infected by the virus, called G4 reassortant EA H1N1. This level of infectivity raises concerns, because it "greatly enhances the opportunity for virus adaptation in humans and raises concerns for the possible generation of pandemic viruses," the researchers wrote.
So far, 30 student teams have entered the Indy Autonomous Challenge, scheduled for October 2021.
- The Indy Autonomous Challenge will task student teams with developing self-driving software for race cars.
- The competition requires cars to complete 20 laps within 25 minutes, meaning cars would need to average about 110 mph.
- The organizers say they hope to advance the field of driverless cars and "inspire the next generation of STEM talent."
Indy Autonomous Challenge<p>Completing the race in 25 minutes means the cars will need to average about 110 miles per hour. So, while the race may end up being a bit slower than a typical Indy 500 competition, in which winners average speeds of over 160 mph, it's still set to be the fastest autonomous race featuring full-size cars.</p><p style="margin-left: 20px;">"There is no human redundancy there," Matt Peak, managing director for Energy Systems Network, a nonprofit that develops technology for the automation and energy sectors, told the <a href="https://www.post-gazette.com/business/tech-news/2020/06/01/Indy-Autonomous-Challenge-Indy-500-Indianapolis-Motor-Speedway-Ansys-Aptiv-self-driving-cars/stories/202005280137" target="_blank">Pittsburgh Post-Gazette</a>. "Either your car makes this happen or smash into the wall you go."</p>
Illustration of the Indy Autonomous Challenge
Indy Autonomous Challenge<p>The Indy Autonomous Challenge <a href="https://www.indyautonomouschallenge.com/rules" target="_blank">describes</a> itself as a "past-the-post" competition, which "refers to a binary, objective, measurable performance rather than a subjective evaluation, judgement, or recognition."</p><p>This competition design was inspired by the 2004 DARPA Grand Challenge, which tasked teams with developing driverless cars and sending them along a 150-mile route in Southern California for a chance to win $1 million. But that prize went unclaimed, because within a few hours after starting, all the vehicles had suffered some kind of critical failure.</p>
Indianapolis Motor Speedway
Indy Autonomous Challenge<p>One factor that could prevent a similar outcome in the upcoming race is the ability to test-run cars on a virtual racetrack. The simulation software company Ansys Inc. has already developed a model of the Indianapolis Motor Speedway on which teams will test their algorithms as part of a series of qualifying rounds.</p><p style="margin-left: 20px;">"We can create, with physics, multiple real-life scenarios that are reflective of the real world," Ansys President Ajei Gopal told <a href="https://www.wsj.com/articles/autonomous-vehicles-to-race-at-indianapolis-motor-speedway-11595237401?mod=e2tw" target="_blank">The Wall Street Journal</a>. "We can use that to train the AI, so it starts to come up to speed."</p><p>Still, the race could reveal that self-driving cars aren't quite ready to race at speeds of over 110 mph. After all, regular self-driving cars already face enough logistical and technical roadblocks, including <a href="https://www.bbc.com/news/technology-53349313#:~:text=Tesla%20will%20be%20able%20to,no%20driver%20input%2C%20he%20said." target="_blank">crumbling infrastructure, communication issues</a> and the <a href="https://bigthink.com/paul-ratner/would-you-ride-in-a-car-thats-programmed-to-kill-you" target="_self">fateful moral decisions driverless cars will have to make in split seconds</a>.</p>But the Indy Autonomous Challenge <a href="https://static1.squarespace.com/static/5da73021d0636f4ec706fa0a/t/5dc0680c41954d4ef41ec2b2/1572890638793/Indy+Autonomous+Challenge+Ruleset+-+v5NOV2019+%282%29.pdf" target="_blank">says</a> its main goal is to advance the industry, by challenging "students around the world to imagine, invent, and prove a new generation of automated vehicle (AV) software and inspire the next generation of STEM talent."
A new Harvard study finds that the language you use affects patient outcome.
- A study at Harvard's McLean Hospital claims that using the language of chemical imbalances worsens patient outcomes.
- Though psychiatry has largely abandoned DSM categories, professor Joseph E Davis writes that the field continues to strive for a "brain-based diagnostic system."
- Chemical explanations of mental health appear to benefit pharmaceutical companies far more than patients.
Challenging the Chemical Imbalance Theory of Mental Disorders: Robert Whitaker, Journalist<span style="display:block;position:relative;padding-top:56.25%;" class="rm-shortcode" data-rm-shortcode-id="41699c8c2cb2aee9271a36646e0bee7d"><iframe type="lazy-iframe" data-runner-src="https://www.youtube.com/embed/-8BDC7i8Yyw?rel=0" width="100%" height="auto" frameborder="0" scrolling="no" style="position:absolute;top:0;left:0;width:100%;height:100%;"></iframe></span><p>This is a far cry from Howard Rusk's 1947 NY Times editorial calling for mental healt</p><p>h disorders to be treated similarly to physical disease (such as diabetes and cancer). This mindset—not attributable to Rusk alone; he was merely relaying the psychiatric currency of the time—has dominated the field for decades: mental anguish is a genetic and/or chemical-deficiency disorder that must be treated pharmacologically.</p><p>Even as psychiatry untethered from DSM categories, the field still used chemistry to validate its existence. Psychotherapy, arguably the most efficient means for managing much of our anxiety and depression, is time- and labor-intensive. Counseling requires an empathetic and wizened ear to guide the patient to do the work. Ingesting a pill to do that work for you is more seductive, and easier. As Davis writes, even though the industry abandoned the DSM, it continues to strive for a "brain-based diagnostic system." </p><p>That language has infiltrated public consciousness. The team at McLean surveyed 279 patients seeking acute treatment for depression. As they note, the causes of psychological distress have constantly shifted over the millennia: humoral imbalance in the ancient world; spiritual possession in medieval times; early childhood experiences around the time of Freud; maladaptive thought patterns dominant in the latter half of last century. While the team found that psychosocial explanations remain popular, biogenetic explanations (such as the chemical imbalance theory) are becoming more prominent. </p><p>Interestingly, the 80 people Davis interviewed for his book predominantly relied on biogenetic explanations. Instead of doctors diagnosing patients, as you might expect, they increasingly serve to confirm what patients come in suspecting. Patients arrive at medical offices confident in their self-diagnoses. They believe a pill is the best course of treatment, largely because they saw an advertisement or listened to a friend. Doctors too often oblige without further curiosity as to the reasons for their distress. </p>
Image: Illustration Forest / Shutterstock<p>While medicalizing mental health softens the stigma of depression—if a disorder is inheritable, it was never really your fault—it also disempowers the patient. The team at McLean writes,</p><p style="margin-left: 20px;">"More recent studies indicate that participants who are told that their depression is caused by a chemical imbalance or genetic abnormality expect to have depression for a longer period, report more depressive symptoms, and feel they have less control over their negative emotions."</p><p>Davis points out the language used by direct-to-consumer advertising prevalent in America. Doctors, media, and advertising agencies converge around common messages, such as everyday blues is a "real medical condition," everyone is susceptible to clinical depression, and drugs correct underlying somatic conditions that you never consciously control. He continues,</p><p style="margin-left: 20px;">"Your inner life and evaluative stance are of marginal, if any, relevance; counseling or psychotherapy aimed at self-insight would serve little purpose." </p><p>The McLean team discovered a similar phenomenon: patients expect little from psychotherapy and a lot from pills. When depression is treated as the result of an internal and immutable essence instead of environmental conditions, behavioral changes are not expected to make much difference. Chemistry rules the popular imagination.</p>