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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 ›
- Xanax and Valium issued new addiction warnings - Big Think ›
Northwell Health is using insights from website traffic to forecast COVID-19 hospitalizations two weeks in the future.
- The machine-learning algorithm works by analyzing the online behavior of visitors to the Northwell Health website and comparing that data to future COVID-19 hospitalizations.
- The tool, which uses anonymized data, has so far predicted hospitalizations with an accuracy rate of 80 percent.
- Machine-learning tools are helping health-care professionals worldwide better constrain and treat COVID-19.
The value of forecasting<img type="lazy-image" data-runner-src="https://assets.rebelmouse.io/eyJhbGciOiJIUzI1NiIsInR5cCI6IkpXVCJ9.eyJpbWFnZSI6Imh0dHBzOi8vYXNzZXRzLnJibC5tcy8yNTA0Njk2OC9vcmlnaW4uanBnIiwiZXhwaXJlc19hdCI6MTYyMzM2NDQzOH0.rid9regiDaKczCCKBsu7wrHkNQ64Vz_XcOEZIzAhzgM/img.jpg?width=980" id="2bb93" class="rm-shortcode" data-rm-shortcode-id="31345afbdf2bd408fd3e9f31520c445a" data-rm-shortcode-name="rebelmouse-image" data-width="1546" data-height="1056" />
Northwell emergency departments use the dashboard to monitor in real time.
Credit: Northwell Health<p>One unique benefit of forecasting COVID-19 hospitalizations is that it allows health systems to better prepare, manage and allocate resources. For example, if the tool forecasted a surge in COVID-19 hospitalizations in two weeks, Northwell Health could begin:</p><ul><li>Making space for an influx of patients</li><li>Moving personal protective equipment to where it's most needed</li><li>Strategically allocating staff during the predicted surge</li><li>Increasing the number of tests offered to asymptomatic patients</li></ul><p>The health-care field is increasingly using machine learning. It's already helping doctors develop <a href="https://care.diabetesjournals.org/content/early/2020/06/09/dc19-1870" target="_blank">personalized care plans for diabetes patients</a>, improving cancer screening techniques, and enabling mental health professionals to better predict which patients are at <a href="https://healthitanalytics.com/news/ehr-data-fuels-accurate-predictive-analytics-for-suicide-risk" target="_blank" rel="noopener noreferrer">elevated risk of suicide</a>, to name a few applications.</p><p>Health systems around the world have already begun exploring how <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7315944/" target="_blank" rel="noopener noreferrer">machine learning can help battle the pandemic</a>, including better COVID-19 screening, diagnosis, contact tracing, and drug and vaccine development.</p><p>Cruzen said these kinds of tools represent a shift in how health systems can tackle a wide variety of problems.</p><p>"Health care has always used the past to predict the future, but not in this mathematical way," Cruzen said. "I think [Northwell Health's new predictive tool] really is a great first example of how we should be attacking a lot of things as we go forward."</p>
Making machine-learning tools openly accessible<p>Northwell Health has made its predictive tool <a href="https://github.com/northwell-health/covid-web-data-predictor" target="_blank">available for free</a> to any health system that wishes to utilize it.</p><p>"COVID is everybody's problem, and I think developing tools that can be used to help others is sort of why people go into health care," Dr. Cruzen said. "It was really consistent with our mission."</p><p>Open collaboration is something the world's governments and health systems should be striving for during the pandemic, said Michael Dowling, Northwell Health's president and CEO.</p><p>"Whenever you develop anything and somebody else gets it, they improve it and they continue to make it better," Dowling said. "As a country, we lack data. I believe very, very strongly that we should have been and should be now working with other countries, including China, including the European Union, including England and others to figure out how to develop a health surveillance system so you can anticipate way in advance when these things are going to occur."</p><p>In all, Northwell Health has treated more than 112,000 COVID patients. During the pandemic, Dowling said he's seen an outpouring of goodwill, collaboration, and sacrifice from the community and the tens of thousands of staff who work across Northwell.</p><p>"COVID has changed our perspective on everything—and not just those of us in health care, because it has disrupted everybody's life," Dowling said. "It has demonstrated the value of community, how we help one another."</p>
"You dream about these kinds of moments when you're a kid," said lead paleontologist David Schmidt.
- The triceratops skull was first discovered in 2019, but was excavated over the summer of 2020.
- It was discovered in the South Dakota Badlands, an area where the Triceratops roamed some 66 million years ago.
- Studying dinosaurs helps scientists better understand the evolution of all life on Earth.
Credit: David Schmidt / Westminster College<p style="margin-left: 20px;">"We had to be really careful," Schmidt told St. Louis Public Radio. "We couldn't disturb anything at all, because at that point, it was under law enforcement investigation. They were telling us, 'Don't even make footprints,' and I was thinking, 'How are we supposed to do that?'"</p><p>Another difficulty was the mammoth size of the skull: about 7 feet long and more than 3,000 pounds. (For context, the largest triceratops skull ever unearthed was about <a href="https://www.tandfonline.com/doi/abs/10.1080/02724634.2010.483632" target="_blank">8.2 feet long</a>.) The skull of Schmidt's dinosaur was likely a <em>Triceratops prorsus, </em>one of two species of triceratops that roamed what's now North America about 66 million years ago.</p>
Credit: David Schmidt / Westminster College<p>The triceratops was an herbivore, but it was also a favorite meal of the T<em>yrannosaurus rex</em>. That probably explains why the Dakotas contain many scattered triceratops bone fragments, and, less commonly, complete bones and skulls. In summer 2019, for example, a separate team on a dig in North Dakota made <a href="https://www.nytimes.com/2019/07/26/science/triceratops-skull-65-million-years-old.html" target="_blank">headlines</a> after unearthing a complete triceratops skull that measured five feet in length.</p><p>Michael Kjelland, a biology professor who participated in that excavation, said digging up the dinosaur was like completing a "multi-piece, 3-D jigsaw puzzle" that required "engineering that rivaled SpaceX," he jokingly told the <a href="https://www.nytimes.com/2019/07/26/science/triceratops-skull-65-million-years-old.html" target="_blank">New York Times</a>.</p>
Morrison Formation in Colorado
James St. John via Flickr
|Credit: Nobu Tamura/Wikimedia Commons|
Archaeologists discover a cave painting of a wild pig that is now the world's oldest dated work of representational art.
- Archaeologists find a cave painting of a wild pig that is at least 45,500 years old.
- The painting is the earliest known work of representational art.
- The discovery was made in a remote valley on the Indonesian island of Sulawesi.
Oldest Cave Art Found in Sulawesi<span style="display:block;position:relative;padding-top:56.25%;" class="rm-shortcode" data-rm-shortcode-id="a9734e306f0914bfdcbe79a1e317a7f0"><iframe type="lazy-iframe" data-runner-src="https://www.youtube.com/embed/b-wAYtBxn7E?rel=0" width="100%" height="auto" frameborder="0" scrolling="no" style="position:absolute;top:0;left:0;width:100%;height:100%;"></iframe></span>
The Persian polymath and philosopher of the Islamic Golden Age teaches us about self-awareness.