Tag / misinformation

by Jacqueline Chartier

Advocating for Cancer Patients: Why Political Action Matters

Those of us who are facing cancer or who have a loved with the disease are likely to be experiencing the most chaotic and turbulent time of our life. The personal, social and financial burdens are enormous—during treatment every ounce of our time and energy is precious. Still, I believe that we need to try and advocate for ourselves and hold people in positions of power to account. Why should you become more politically active? Here are two important reasons why I’ve personally chosen to speak out about issues affecting cancer patients.

Political Scandals and Corruption in Healthcare

Recently, the outgoing CEO of Alberta Health Services highlighted serious allegations about the potential misuse of taxpayer money by AHS and the Government of Alberta. There are allegations that the Minister of Health, Adriana LaGrange, was involved in dictating the price that AHS was to pay for multi-million-dollar contracts, including chartered surgical facilities. It’s also alleged the minister subsequently directed AHS to cease its internal investigations and conceal the findings.

As a cancer survivor and someone who relies heavily on the public health care system, my reaction is disbelieve and complete outrage. Essentially Alberta’s UCP government is accused of funnelling over $600 million, to a key political donor and then covering it up by firing health executives who were investigating. If proven true, the size and scope of the funding involved would be unprecedented in Alberta history.

The Auditor General is currently conducting a limited review and several other investigations are underway, transparency is essential, and Albertans deserve it. Both Alberta’s New Democrats and the Alberta Medical Association have stressed that a comprehensive, independent public inquiry is needed. Meanwhile, with every new revelation in what the NDP have dubbed the “CorruptCare” scandal, the chorus calling for a public inquiry grows louder.

An inquiry, conducted under the Public Inquiries Act, would ensure a non-political and impartial investigation, allowing the public to assess health care spending and address any potential government interference. It would ultimately allow cancer patients and their families to assess an unprecedented scandal that may have potentially undermined their quality of treatment.

Misinformation and Detrimental Health Policies 

The Trump administration is a threat to healthcare, both in the United States and globally. For instance, Robert F Kennedy Jr.’s appointment as Secretary of Health and Human Services is cause for grave concern. Long before the COVID-19 pandemic, Kennedy was building up a following with his anti-vaccine nonprofit group, Children’s Health Defense, and becoming one of the world’s most influential spreaders of fear and distrust around childhood vaccination. Now President Donald Trump has chosen Kennedy to lead the Department of Health and Human Services, which regulates vaccines. 

As the secretary of the HHS, Kennedy has oversight over 11 agencies including the FDA, the CDC and the National Institutes of Health. He has frequently come under fire from both Democrats and Republicans for some of his controversial beliefs – the most contentious being his extensive history of anti-vaccine work and rhetoric. I’m especially concerned about his active stance against cancer vaccines and his efforts to undermine confidence in them. 

Kennedy has specifically focused on the HPV vaccine Gardasil. In a 2019 video posted on his Children’s Health Defense website, Kennedy called Gardasil “the most dangerous vaccine ever invented.” In truth studies have proven Gardasil is safe and that it is nearly 100 per cent effective against cancers caused by the human papillomavirus – most notably cervical cancer. 

New estimates were published last month by the Centers for Disease Control and Prevention. The U.S. government report adds to evidence that the HPV vaccine, once called dangerous by Kennedy, is preventing cervical cancer in young women. The recent report found that from 2008 to 2022, rates for precancerous lesions decreased about 80 per cent among 20 to 24-year-old women who were screened for cervical cancer. 

HPV, or human papillomavirus, is common in the adult population. Most HPV infections cause no symptoms and clear up without treatment. But HPV also has the potential to develop into cervical cancer as well as some other forms of malignancy, thousands of cases a year, according to the CDC. Women in their 20s are the group most likely to have been given the Gardasil vaccine, which has been recommended in the U.S. since 2006 for girls and since 2011 for boys.

HPV vaccine, including Gardasil, is currently free in Canada for certain ages and groups of people through publicly funded programs. It’s also available for purchase privately. All provinces and territories currently offer the vaccine for free through school-based programs and catch-up programs. In Alberta, students in grade 6 receive the HPV vaccine as part of the school immunization program.

by Jacqueline Chartier

Defeating Cancer Misinformation

I know what it’s like to be diagnosed with a terrifying, complex, and potentially life-threatening medical condition — I’m an 11-year survivor of endometrioid adenocarcinoma. When I first learned that cancer had invaded my body, I was shocked and devastated. There was also the concern that as a newly diagnosed patient I had insufficient knowledge about cancer, or more specifically gynecological cancer. I’d never even heard the term endometrioid adenocarcinoma, so I knew next to nothing about my disease or how it would be treated. But then when I struggled on my own to find information or to learn more, I was often confused and felt overwhelmed. 

I discovered, much to my dismay, that those of us searching for information about cancer are buried by an avalanche of false claims, from well-meaning but dangerous advice to callous exploitation by charlatans. I was at the most vulnerable point in my life and I felt disillusioned, especially by much of what I was exposed to online or on social media. 

One 2016 report found that more than half of the most widely shared cancer articles on Facebook consisted of medically discredited claims. A more recent study examined the 50 most popular social media articles on the four most common types of cancers. The review found dangerous misinformation in more than 30 per cent of the articles analyzed and, perversely, that these articles garnered more online engagement than factual articles.

I’ve made it one of my personal goals to help fight the abundance of misinformation that is present regarding cancer. Misinformation in the form of dangerous half-truths and lies is often spread uncontrolled, either through deliberate malice or woeful ignorance. As a cancer survivor, I have particular distain for individuals, groups or organizations that deliberately attempt to exploit our vulnerability—it’s morally repulsive that they endeavor to benefit from our plight. We as cancer patents have access to millions of informational resources, but we’re forced to remain ever vigilant as we try to distinguish facts from a tide of lies and falsehoods.

How to Recognize Cancer Quacks

Use these important guidelines for spotting all categories of misinformation online.

  • Consider the primary source. Click away from the story you are reading to investigate the complete website, its mission and its contact information.
  • Read beyond the link or the first few lines of an article. Sometimes headlines can be outrageous in an effort to get clicks. What’s the whole story?
  • Confirm the author is reliable. Perform a quick search to get information on the author. Are they credible? Are they real?
  • If an article has listed supporting sources you should investigate by clicking on those links or searching for the sources. Determine if the source material that is given actually supports the content of the story.
  • Check the date. Reposting old news stories doesn’t mean they are still relevant to current events. New details or updated evidence on a topic are always emerging.
  • Is it a joke? If it is too outlandish, it might be intended as satire. Research the site and author to be sure.
  • Biases can influence how someone responds to an article, so consider if your own beliefs or perspective could be affecting your judgement. Remember that most social media platforms suggest stories that match a person’s interests, opinions and browsing habits.

I still believe that ultimately the ability to access health information online is important and empowering and helps patients be proactive in their own care. But because so much information is now available, the burden of deciding what is true or false is increasingly falling on individual consumers, in this case cancer patients and their loved ones. 

Health care professionals, research and health care organizations, government agencies, as well as technology and social media companies all need to take more responsibility and play a role in addressing the problem. They must try to help individuals be more critical consumers of information. To this end, many consumer and patient advocates argue that social media and health literacy opportunities should be incorporated into the K–12 and college curricula.

Fortunately, there are lessons that can be learned by the cancer community from interventions to counter scientific conspiracy theories, especially efforts to counter antivaccine propaganda. Previous studies indicate that improved communication of the scientific consensus can overcome some popular conspiratorial thinking on a wide variety of topics, from vaccines to climate change. 

We can take the “hidden” cure for cancer narrative as one example. The scientific and medical communities can counter this narrative by explaining that, far from being a monolithic entity, cancer is not one illness but an entire family of more than 200 diseases. Furthermore, these illnesses differ greatly between tissue type and even individual. How these malignancies respond to different interventions varies hugely, rendering the idea of a single “magic bullet” for all these myriad types exceptionally unlikely. The benefit of this approach is that it takes concerns seriously while still showing the concerns to be unfounded, ultimately improving understanding.

Sources 

David Robert Grimes; The Struggle against Cancer Misinformation. Cancer Discov 1 January 2022; 12 (1): 26–30. https://doi.org/10.1158/2159-8290.CD-21-1468

Elia Ben-Ari; Addressing the Challenges of Cancer Misinformation on Social Media. 9 September, 2021; published by the National Cancer Institute.

FactCheck.org’s 2016 article How to Spot Fake News