On Friday October 6, shortly after our reviewers called its news release about a text messaging study “an exercise in spin,” George Washington University (GWU) withdrew that news release without explanation.
The following week, apparently after careful consideration, the news release was re-issued with a one-word change to the original: the addition of the word “some” to the headline.
Here’s the original headline: Text messaging program may help pregnant women kick the smoking habit
Here’s the revised headline: Text messaging program may help some pregnant women kick the smoking habit [emphasis added]
An asterisked footnote said, “The headline of this release was edited for clarity to match the content in the body of the release.”Is the corrected news release accurate?
In their evaluation of the original news release, our reviewers expressed major concerns about the overall framing of the study results and how this seemed to conceal the fact that the results for the primary outcome were negative. They wrote:
“The reduction in smoking rates for the study overall was not statistically significant — full stop. That should have been the headline. It’s not acceptable for the release to bury the lack of statistical significance in the body of the text while claiming benefits in the headline.”
While slightly recalibrated, the revised, corrected headline maintains the framing of the original. And the negative result for the primary outcome is once again buried in the fifth paragraph.
We reached out to public relations experts at several academic institutions to ask them whether they thought the new, corrected headline was an accurate reflection of the study results. They didn’t mince words.
“The paper is a negative study,” said Preeti Malani, MD, a professor of medicine at the University of Michigan and HealthNewsReview.org contributor. “And that’s not how this press release reads.”
Malani is also an associate editor at JAMA and previously helped oversee the JAMA media relations department. She said the benefits touted in the headline were secondary outcomes that should be considered “exploratory and hypothesis-generating.” The fact that they are emphasized in the headline and lead sentence will create a misleading impression for readers, she said. “We would never want people to walk away from this thinking, ‘Wow, these text messages are great,’ because that’s not what the study found.”
She suggested creative ways to frame the negative findings that wouldn’t run the risk of misinforming readers. “The fact that there are so many pregnant women smoking, that’s a big problem,” Malani said. “And maybe that’s one way to present the findings while still keeping it interesting and true to the science. Maybe your headline could be something like, ‘No magic bullet to help women quit smoking during pregnancy.'”‘A rosy picture’ that’s not justified
Earle Holland, who was the senior science and medical communications officer at Ohio State University for 35 years before retiring, was even more pointed in his criticism.
“There’s a fundamental dishonesty here, first in the original release and now in their so-called remedy,” said Holland, who is also a HealthNewsReview.org contributor. “It suggests that GW media folks’ main interest is in painting a rosy picture rather than accurately explaining the outcomes of their research.”
Holland said that adding adding “some” to the headline makes it “more accurate, but not accurate enough,” adding that “the findings weren’t statistically significant, so the whole thrust of the release should have been reworked. If they were going to take it off EurekAlert! — which is basically a retraction — only to make a change, then they should have fixed everything.”
Michael L. Millenson, a health care consultant and researcher at Northwestern University who has studied the evidence base for health apps targeting consumers, said: “It’s distressing to see an academic press release with the kind of ‘spin’ on an app’s effectiveness the public might expect from a for-profit organization, not a university. While the details of the press release are careful not to make undue claims, the headline and first paragraph just as carefully imply more significant results than appear justified.”
Millenson added, “The FDA under the Trump administration has said it wants to pull back on premarket regulation of apps. The evidence base for these type of interventions is already modest, and the relaxing of regulation makes rigorous and reliable studies that much more vital.“
GWU’s Director of Media Relations, Kathy Fackelmann, did not respond specifically to our request to address this criticism. When she notified us that the corrected release had been posted, she that GWU was “in the process of reviewing our news release practices keeping in mind some of the points in your review. We will also reach out to the reporters who contacted us about the release and send them the revised version just so that they are aware of the updated release.”How should news releases be corrected?
Fackelmann’s comments raise the issue of how to deal with inaccurate news releases — a subject that also sparked strong opinions from experts. While some said it was appropriate to remove a flawed original and replace it with a corrected version — as GWU did in this case — others argued that the original should be maintained as part of the public record.
Joann Rodgers, a journalist and author who formerly led Johns Hopkins Medicine’s communications and public affairs division, said it was important to always consider the end user of the information in these types of situations.
“In this case, that would call for ‘repeal and replace,’ with a note from the university public information officer/editor that a release titled (original title) was in error, has been removed from the site and replaced with a corrected version. It’s also a best practice to spell out the nature of the original error, so long as that does not lead to confusion.”
Rodgers, a HealthNewsReview.org contributor, said the GWU correction was inadequate to address the magnitude of the initial error, and that the “headline/lede graphs should have emphasized the ongoing difficulties in getting even motivated groups to quit smoking.” A secondary message could be that “some interventions work for some people some of the time,” she said.
Matt Shipman, a public information officer at North Carolina State University and HealthNewsReview.org contributor, said that “minor errors should be corrected, and the relevant release updated, as quickly as possible. I also think it’s appropriate to include a note specifying that changes were made and what those changes were.” But “If the errors are so egregious that the release is effectively moot, I think the entire thing should be taken down,” Shipman added. “In either case, the institution should attempt to identify any news outlets that ran stories based on the release and notify them of the mistakes as quickly as possible.”
However, Earle Holland, formerly of Ohio State, said that it was bad practice to delete the original flawed version of a news release that has been retracted. He likened it to “trying to rewrite history, or at least the public record,” and said that the flawed version would continue to linger on the Internet despite being scrubbed from university websites and PR wires.
Moreover, he said that at public universities, news releases may be subject to the state’s public records laws, which in most cases require the university to maintain the integrity of its official documents. Altering a news release might represent a violation of such laws, Holland said.
He noted that GWU, as a private institution, would not fall under any legal requirement to safeguard public documents. But he believes it’s still in the best interests of the reader to maintain the original flawed version, so that it’s available for comparison against the corrected version.
“The best way to handle situations where a release is found to be wrong is to add an editor’s note to that release stating the error and, if available, a link to a revised/corrected version of the release. It’s key to make sure the original release and any ‘fixed’ version are inseparable.”
Holland said it was important to admit to errors when they occur, which helps reinforce to the public the institution’s commitment to honesty and transparency. This also will remind some readers that science is often self-correcting, he added, and that findings can change as new information is available.
“And that is a message that is well worth sending,” Holland said.
Derek Lowe, a biomedical researcher at Novartis, is talking “A bit about biopharma investing” today on his blog.
It’s all about the problems inherent in making decisions based on drug company news releases.
His comments are targeted at investors, who in turn are the main targets of these drug company announcements. But his logic could just as easily apply to journalists, patients, and consumers — all of whom are routinely snookered by the optimistic projections and misleading interpretations often found in these documents.
Lowe’s post was sparked by Merck’s announcement yesterday that the company is not going to seek FDA approval for an experimental cholesterol drug, anacetrapib. That’s despite announcing in June that the drug “met its primary endpoint, significantly reducing major coronary events” in a large phase 3 study.
Apparently some investors took that June announcement to mean that the company would be forging ahead with the drug and likely reaping hefty profits from its sale. Those hopes were dashed yesterday when Merck decided to pull the plug. The “significant” benefits observed in the study were not meaningful enough to patients to justify proceeding.
Lowe notes that Merck’s announcement back in June wasn’t particularly frothy, and that the company “is a big, respectable, well-run drug company that does not go around trying to fool people.”
Merck’s history certainly would challenge that statement, but Lowe’s point is worth taking: There are a lot of other players in the market who are much less cautious than Merck.
Here’s his insightful take on why that’s a big problem:
Merck certainly did not try to deceive anyone with their announcement earlier this summer about anacetrapib, but remember, mundus vult decipi: people want to deceive themselves, and they will line up and pay money to be told the stories that they want to hear. That works out pretty well at the movies or at the bookstore, but not so great in the stock market. To lapse into Latin some more, when you read the public statements made about a drug discovery project, you will encounter at times both suppressio veri, where the truth is incompletely revealed, and suggestio falsi, where things that aren’t true are made to sound as if they are. Blatant examples of either one can land people in trouble, of course, but that’s the tricky part about biopharma investing: they don’t have to look so blatant to be effective. Touting positive results in a trial that’s so underpowered that they don’t mean much, sliding over the fact that this was an open-label study rather than a double-blinded one, not going into the previous times this compound or therapy has been in the clinic, not placing the results in a context with clinical or regulatory relevance – there are a lot of ways to accomplish the same goal, and if you stick with the field you’ll see them all. Again, and again, and again.
Everything that Lowe says about investors can also be applied to patients — many of whom have a lot more riding on these promotional announcements than any investor will ever have.
That’s why we review health care news releases and even make a standing offer to help improve these announcements before they are issued to the public.
We’re also continually working to provide the tools people need to become smarter health care consumers. We hope you’ll take a look at these resources and share them widely.
Journalists shouldn’t take organizations they report on at face value. Rather, they should ask who calls the shots and who provides the funding. And they should report findings that call into question a group’s credibility.
But as HealthNewsReview.org has repeatedly found, that essential legwork often doesn’t occur when it comes to patient advocacy groups. Most recently we chronicled how news stories and op-ed taglines didn’t call out the pharmaceutical industry backing behind the nonprofit Alliance for Patient Access.
There’s good reason to be skeptical. Well over half of patient advocacy groups acknowledged accepting money from drug, biotech, or medical device companies in recent surveys published in the Journal of the American Medical Association and the New England Journal of Medicine. Nearly 40 percent reported having a current or former corporate executive on their board, according to the latter study.
Why does this matter? Corporate cash may buy a nonprofit organization’s silence on skyrocketing drug costs or induce its help in clearing regulatory hurdles for unproven treatments or quashing cost controls. For example, last year pharma-backed patient groups such as the AfPA and Patients Rising lobbied to defeat a Medicare Part B demonstration project to lower the cost of drugs administered in physicians’ offices.
It’s not always possible to know the precise impact of a particular contribution, but the public can better judge an organization’s credibility and motives when financial interests are in the open.
By year’s end, Kaiser Health News plans to unveil a database of at least 1,000 patient advocacy nonprofits that will include each group’s financial information, an overview of its policy positions, and a list of publicly disclosed contributions from industry.
“We hope this will be a resource for readers and reporters interested in critically engaging with issues that patient advocacy groups have a stake in,” said KHN investigative reporter Emily Kopp. “We hope to assist independent patient advocates, journalists and news consumers in keeping patient advocacy groups accountable to the constituencies they represent.”
With her input, we’ve compiled a list of quick-and-dirty steps journalists and consumers can take to do their own nonprofit sleuthing. Most of these can be accomplished in less time than it takes to brew a pot of coffee.Start with a smell test
Plug the organization’s address into Google Maps. Does the address take you to the location of a Washington, D.C., consulting firm or an expensive home? If so, that’s a red flag that the group might be front for a corporate interest. If the address isn’t listed on the web, you can find it on the first page of the organization’s Form 990 (next step).
Drawback: This won’t help you detect a legitimate advocacy group whose agenda is being influenced by corporate contributions.Download the Form 990
The IRS requires tax-exempt organizations to disclose some of their inner workings by filing an annual Form 990. These documents are free online through outfits such as the Foundation Center, CitizenAudit.org, ProPublica’s Nonprofit Explorer, Charity Navigator and Guidestar. Nonprofits must disclose governing officers, key employees, and the five highest paid contractors making more than $100,000. They’re also required to describe their most expensive programs and list any business relationships between board members and the organization.
Some questions to explore:
- Do any of the board members or the “principal officer” listed on page 1 have a relationship with industry? Check LinkedIN and do a web search to find out.
- Is the patient group paying a large portion of its budget to outside consultants? If so, whom else do those consultants work for?
Drawback: Nonprofits do not have to disclose their financial contributors. Also, these records are usually a year or two old.Explore the organization’s web site
A group’s website will give you a feel for its commitment to transparency. Many nonprofits voluntarily disclose their funders on their web sites, often listed as “partners,” “sponsors,” or “corporate members.” Sometimes funders are listed in annual reports posted on the web site. Sometimes the data is there, but it’s sketchy or difficult to find. An appendix to the NEJM study suggests questions including: Does the organization list the names of donors? Does it claim that the list is complete? Are the amounts and uses of donations disclosed? Does the organization state total revenue from corporate sources?
Other things to check:
- News releases and communications to regulators. Patient groups naturally align with industry on some issues, such as increased funding for the National Institutes of Health. But if an advocacy group consistently echoes the corporate policy positions, it’s worth asking whether the group is really looking out for patients.
- A conflicts of interest or ethics policy. Is there one? Does it cover corporate contributions?
Drawback: Exact amounts of contributions and what they are used for are seldom disclosed.Check out the financial interests of any physician leaders
If physicians are on the board, see if they receive corporate cash. Thanks to the Affordable Care Act, drug makers are required to disclose payments to physicians. ProPublica’s Dollars for Docs and CMS’ Open Payments house this data. It’s also worth plugging a physician’s name into PubMed and reading any publicly available research papers, where financial disclosures are usually listed at the end.
Drawback: These sources don’t capture all potential economic conflicts. For example, oncologists and rheumatologists can profit significantly from Medicare markups on drugs they administer in their offices through injection or infusion. Also, they only apply to doctors, not other health professionals.Look at corporate disclosures
Public pressure, criminal prosecutions and state mandates have led some companies to report their contributions to nonprofits on their web sites or in annual reports, although it’s not required by law. Also, some companies voluntarily disclose donations to social welfare nonprofits, known as 501(c)(4)s, and those are tracked by the Center for Public Accountability.
It could be worth investigating corporate contributions made indirectly through nonprofits. Nonprofit trade groups such as the Pharmaceutical Research and Manufacturers of America (PhRMA), the Biotechnology Innovation Organization (BIO), and the Medical Device Manufacturers Association (MDMA) must disclose contributions to nonprofit advocacy groups on their own 990 tax forms. Some corporations do at least some giving through private foundations, which disclose their beneficiaries via their own versions of a 990, called a 990-PF. But again, those filings will not include direct corporate contributions.
Drawback: Voluntary corporate disclosures aren’t always easy to find, don’t always include amounts, and often aren’t searchable. And they’re voluntary, so if a company wants to hide a contribution, it can.Read this (very short) list of U.S. advocacy groups that have pledged not to accept corporate funding
Yes, they exist. However, some fit a broader definition of health advocacy rather than patient advocacy, notes Sharon Batt, a longtime researcher and writer on the topic who compiled the list with Adriane Fugh-Berman, M.D., of Georgetown University Medical Center and PharmedOut.org.
Perusing these organizations’ web sites will give you an idea of what good disclosure practices and conflict-of-interest policies look like.
- Breast Cancer Action
- Center for Science in the Public Interest
- Jacobs Institute of Women’s Health at George Washington University,
- Lymphoma Foundation of America
- National Center for Health Research
- National Women’s Health Network
- Our Bodies Ourselves
- Patients for Affordable Drugs
- Public Citizen Health Research Group
Drawback: None that we can identify.
A number of major news outlets reported on a new study in JAMA that determined ovarian reserve tests aren’t a good predictor of fertility among women trying to conceive naturally who have no history of infertility.
Common biomarker tests to assess ovarian reserve–including antimüllerian hormone (AMH) and follicle-stimulating hormone (FSH)–are often given to women to assess their reproductive potential. In recent years, these common tests have been marketed directly to younger women in general as “ovarian reserve tests” or the “baby deadline test.”
But, the study found that the biomarkers were not associated with reduced fertility, and therefore “women should be cautioned against using AMH levels to assess their current fertility.”
STAT, HealthDay, CNN and Reuters Health wrote about the study, and all did a solid job reporting on the results, gathering independent perspectives, and including important limitations to the findings–such as that the outcome measured was conception, and not carrying a baby to term.
But STAT and HealthDay dove into the deeper ramifications: The study calls into question the necessity of ovarian reserve tests that are marketed directly to women who plan to have a baby one day. As STAT noted:
“…Over the years, they’ve worked their way into being in the mainstream without evidence,” said Dr. Anne Steiner, a reproductive endocrinologist at the University of North Carolina and one of the study’s authors.
That’s led to a boom in ovarian reserve testing, both in the clinic and with direct-to-consumer tests from companies. One startup, Modern Fertility, is pre-selling a new $149 fertility test that measures FSH, AMH, and other fertility hormones. The company says physicians will tally all those measures up and calculate a “fertility score.”
“As we get older, fertility becomes a giant egg-shaped question mark,” the company said in an August blog post announcing the test.
It’s heartening to see news outlets cover this important dynamic to the study–because it’s something that already was being questioned by experts.
Earlier this year, I reported on “ovarian reserve testing” events marketed to women. Too often, experts said, the potential drawbacks aren’t disclosed in the promotions, and news coverage frequently lacks much-needed scrutiny on the usefulness of such tests. For example, a woman who finds out she has low ovarian reserve may assume she’s infertile and jump right into unnecessary fertility procedures. Or, a woman who has normal results may assume she’ll easily become pregnant.
“It’s false reassurance because other factors–for example tubal scarring from endometriosis or past infection–that have nothing to do with the quality of eggs may be the cause of infertility,” said Dr. Karen Carlson, MD, a HealthNewsReview.org contributor and Director of Women’s Health Associates at Massachusetts General Hospital and Associate Professor of Medicine at Harvard Medical School.
The physical skill required to walk a tightrope differs little from that required to walk across a room, Carol Svec writes in Balance: A Dizzying Journey Through the Science of Our Most Delicate Sense. The body’s balance systems, Svec reports, integrate signals from the inner ear, eyes, and sensory nerves to enable us to stand up without toppling over, maneuver snaky mountain passes, and relish roller coaster rides. To research her book, Svec talked with scientists, clinicians, and individuals with balance disorders. She also gamely explored a tumbling room, swaying hallway, and menacingly named “Vominator.”Member blog name: Advance copy: Backstories on books by NASW membersArticle topic: Science writing news
Is President Donald Trump mentally ill?
Do we really need over 500 psychiatric diagnoses?
What do the changes in the Diagnostic and Statistical Manual of Mental Disorders (or ‘DSM’ for short) over the past 60+ years say about psychiatry? The influence of industry? Us?
This conversation with renowned psychiatrist, Allen Frances MD — although just over 10 minutes long — touches on all of the above and much more. Trust me, he’s not shy.
A central theme in my conversation with Dr. Frances is the DSM. This diagnostic guide — published by the American Psychiatric Association — lists standardized criteria that psychiatrists use in making diagnoses. Frances chaired the revision of the 4th edition, and was an outspoken critic of the 5th edition.
In many ways the DSM is not just a barometer of psychiatry, but a litmus test of many of the issues we feel quite strongly about, including: over-diagnosis and over-treatment, as well as the minefield of conflicts of interest to be found at the intersection of industry and academic medicine. Here is some of our previous writing on these topics:
- Selling Adult ADHD & Cashing in on Emotions
- Critics Call the Approval of the DSM-V a Sad Day for Psychiatry
- Journalists Miss Opportunity to Examine Mental Health Screening
We’ve also written on whether it’s appropriate for the media to speculate on whether or not Donald Trump has a psychiatric illness.
Finally, if you are someone who is concerned that our medical culture is becoming too closely aligned with the notion of ‘a disease for every drug, and a drug for every disease,’ then you might enjoy our publisher Gary Schwitzer’s take on a New York Times op-ed entitled: ‘Diagnosis: Human.’
You can find all the Watchdog Podcasts HERE
In November 2014, Erika Check Hayden left her San Francisco home for Sierra Leone, to report for Nature (where she was then a staff reporter) on how Africans and aid organizations were responding to the Ebola outbreak. Emotionally, that reporting would turn out to be unlike any other story she had done. Even when she was back home in San Francisco, Check Hayden found the news “so devastating,” she says. “There was a period of time—pretty much every working day—where I would get up, do an interview, read a story, watch a video, or look at a photo essay, and just cry.” And although covering the story close-up was mentally and emotionally draining, Check Hayden knew it was important for her to do so.
At an Ebola treatment center in Bo, Sierra Leone’s second largest city, Check Hayden met a family—a mother, father, and their children—who were all infected with Ebola. The day Check Hayden was there, the family had just learned their youngest child died. The father seemed to be doing well with the disease, but it wasn’t clear whether or not the mother was going to survive—and her child’s death was sapping her own will to live.
Check Hayden couldn’t help but feel emotionally affected—nor, she says, would denying her response benefit her work. “Being able to admit to yourself and to access the fact that you are really affected by something motivates you to do your job as a journalist and follow the story,” she says. The family’s heartbreaking circumstances spurred her to follow their story even after she left Bo. (The family’s story ended more happily than some: the mother, father, and remaining two children survived.)
The mental health hazards of covering war, terrorism, violence, and other disasters are well known. But science, environmental, and health journalists can also be at risk. Science journalists might experience what clinical psychologists call “vicarious trauma,” which refers to the emotions that arise when reporters bear witness to another person’s suffering. Covering topics such as chronic or rare illnesses, infectious disease outbreaks, climate change, extinctions, and other environmental crises can evoke anxiety, fear, and guilt, or even trigger post-traumatic stress. “If you’re connecting with another suffering human being and you’re doing your work well, you can’t help but to be moved in ways that are both positive and negative,” says Elana Newman, a clinical psychologist and research director for the DART Center on Journalism and Trauma. “Bearing witness is an occupational hazard that most journalists aren’t trained for.”
Science journalists—like war reporters—need to take such mental health impacts of their work seriously, says Check Hayden, who is now director of the Science Communication Program at the University of California, Santa Cruz. “We are increasingly called upon to cover crises and traumatic events because we have a particular expertise to bring,” she says. “As a profession, we need to develop standards and ethical practices around doing crisis reporting. This would include ways to protect the health and safety of reporters, including their mental health.” (more…)
The National Association of Science Writers (NASW) will again sponsor several exciting programs for student journalists during the AAAS meeting, being held next February in Austin.Article type: Getting startedArticle topic: NASW news
Drug companies have been promoting their views on the nation’s op-ed pages via commentary writers who come across as neutral-sounding experts, and editors don’t always call out these industry mouthpieces for what they are.
Pharma-friendly guest columns have appeared on editorial pages around the country without disclosure of the authors’ drug industry ties, including the Philadelphia Inquirer, Austin American-Statesman, and USA TODAY Network, HealthNewsReview.org found.
Last month STAT News retracted a commentary praising drug industry sales reps after the physician whose byline it contained was found to be on the pharma payroll. The physician, a board member of the industry-funded Alliance for Patient Access (AfPA), also admitted to HealthNewsReview.org that it was ghostwritten. Another commentary in STAT, which praised drug ads, was written by a patient who said a PR firm employed by a drug company helped her write it.Op-eds disclosures contrast sharply with news reporting
But while STAT has taken a lot of heat for the lack of transparency, it’s clear other publications aren’t informing readers about conflicts of interest on their op-ed pages.
We found a dozen examples with some connection to the little-known AfPA, which HealthNewsReview.org recently profiled in detail. A writer’s affiliation was sometimes disclosed, but with no mention of the organization’s financial backing. In some cases, physician writers had personally accepted pharmaceutical money that was not disclosed.
This is a sharp contrast to transparency standards for news reporting. Edward Wasserman, dean of the Graduate School of Journalism at the University of California at Berkeley, goes so far as to describe op-ed pages as “ethical bordellos,” where editors in need of content are sometimes complicit in concealing the connections between a writer and the subject of a column.
“The kinds of disclosures that would be routine in news coverage — by which I mean when you’re quoting somebody, if that person has a connection to the subject that isn’t clear from the context in the story then you need to disclose it to your readers — those standards have rarely been applied to op-ed contributors,” Wasserman said.
Not everyone’s assessment is as harsh. “I think there’s a bit of naivete on the part of editors,” said Sharon Batt, author of the book “Health Advocacy, Inc.” She noted heightened skepticism among some journalists that’s led to more critical reporting of pharma-funded advocacy groups in recent years, while op-ed editors in the same newsrooms don’t seem to be asking questions about where advocacy groups get their money.Three pharma-friendly commentaries in 2017
Just this year:
- The USA TODAY Network, an online amalgam of content from Gannett publications nationwide, ran a column entitled “Insurance companies block heart disease treatments,” by Craig Davis, who’s identified as a “an Orlando resident” and “volunteer patient advocate for the Global Healthy Living Foundation.” The column cites data from the Institute for Patient Access, a sister organization of the AfPA, showing that “thousands” may have been denied access to an expensive cardiac drug, a PCSK9 inhibitor, and urges readers to sign an online petition to “ask the National Association of Insurance Commissioners to help address the alarming rejection rates that qualifying patients across the country face in accessing new, groundbreaking, cholesterol-lowering medications.” The piece didn’t mention that both the institute and the foundation are funded by companies that have invested in that drug. After HealthNewsReview.org inquired, its tagline was expanded to identify Davis as “a volunteer patient advocate for the Global Healthy Living Foundation, a national non-profit organization, which advocates for improved quality of life for people with chronic disease. GHLF is supported by various pharmaceutical and biomedical companies and university and college institutions.”
- The Austin American-Statesman ran a piece entitled “Protect patients from nonmedical prescription switching,” by Joshua Stolow, M.D., who is identified as a board member of the Coalition of State Rheumatology Organizations and a member of the Alliance for Patient Access. The commentary advocated pending Texas legislation that would block health plans from ever switching patients to cheaper but similarly effective drugs once a patient has a prescription. The paper didn’t note that both groups Stolow is affiliated with are funded by drug companies, and that Stolow received $7,650 in drug company payments from August 2013 through 2015, according to ProPublica’s Dollars for Docs.
- The Philadelphia Inquirer ran a commentary by AfPA executive director Brian Kennedy, titled “Insurers make troubling decisions on new treatments,” which argued that health plans’ decisions to deny coverage for a newly approved $300,000-a-year medication for Duchenne muscular dystrophy “set a dangerous precedent.” In okaying the drug for sale last year, the FDA said there was insufficient data to show the drug, Exondys 51, helps patients. The paper identified Kennedy’s affiliation, but did not mention how the AfPA, which he runs, is funded.
Efforts to find out how these commentaries ran without mention of the drug industry ties of their authors met with limited success.
Gannett spokeswoman Chrissy Terrell emailed this response: “Our Network newsrooms follow ethical principles, which are posted on the home page of our websites.” She provided a link to their guidelines, which call for opinion pieces to adhere to “the same standards of accuracy as news stories” but don’t require opinion writers to meet transparency standards, as Gannett journalists do.
Terrell added: “The original version of the opinion piece left out information, which may have confused some readers, and The (Fort Myers, Fla.) News-Press staff addressed (this) by including more in the tag line.”
American-Statesman Editor Debbie Hiott thanked us for asking about her paper’s disclosure policies, but she didn’t give details about the paper’s process. Hiott said in an email: “We do have an expectation that writers divulge conflict of interest. We’ll go back and review this case and our procedures to make sure we are handling it as we should, and I look forward to seeing the suggestions in your article.”
The Philadelphia Inquirer’s editorial page editor, Harold Jackson, indicated it’s up to readers to discern potential conflicts. He wrote in an email:
“Our policy in publishing commentary by outside sources is to identify the organization the person represents in expressing an opinion and, with that person’s permission, publish his email address so readers may directly contact the writer with any questions or observations they may have. We believe that provides readers with enough information to do their own research about the writer’s affiliations. If there are occasions when we believe more information should be published, we do our best to provide it.”
Sandra Shea, managing editor in charge of opinion for the Philadelphia Media Network, which owns the Inquirer, added:
“These are opinion [emphasis by Shea] pages. We assume that readers are intelligent enough to understand that opinion writers may have agendas. They are not news stories, and are by nature subjective. The expectation that we would report on sources of funding for an organization or individual submitting an opinion is not realistic, and I can’t imagine any publication would contemplate such a policy.”
But is it realistic to expect every reader to contact the writer to inquire about potential conflicts? And while identifying a writer’s affiliation might be adequate if it’s a well-known group, such as Blue Cross Blue Shield or the American Hospital Association, most readers wouldn’t be familiar with the AfPA or the GHLF. Shouldn’t editors offer some information about little-known groups to help readers evaluate arguments they put forth?
Charles Seife, a journalism professor at New York University who’s sued the FDA to obtain information about the approval process for Exondys 51, the drug cited in the Inquirer column, said it boils down to whether a typical reader would be deceived.
“I think it’s deceptive to portray a PR guy paid by pharma to do their bidding as some kind of patient advocate, so yes, I think the description at the end of the (Inquirer) piece is inadequate,” he wrote. “It would have been nice had the Inky caught the issue with just a bit of background research — simply wondering ‘who are these guys?’ would have helped. But, frankly, it’s not easy to make a hard distinction between outright front groups and industry-backed fellow-travelers and think tanks — and what difference it should make if one could make that distinction.”
Some publications do ask writers to divulge their ties. In the past at least, the New York Times has required op-ed writers to sign an agreement to disclose financial interests in the topic they’re writing about to Times editors.
USA Today includes this sentence in its commentary submissions guidelines: “If you or a business, trade group or other institution with which you are associated stands to gain financially or in any other way from your column, you should disclose that information to us in detail. In most cases, it should also be included in the body of the piece or in the author’s biographical information.”
The Washington Post asks that op-ed writers “disclose any personal or financial interest in the subject at hand.”
“It’s important to disclose anything that may amount to a conflict of interest,” Post media columnist Margaret Sullivan said in an email. “This can be done by describing affiliation in an identification line or in any editor’s note. The more that readers can understand about where a writer is coming from, the better.”
Unfortunately, there’s not always an incentive for editors to probe. Commentaries by outside writers constitute free content and fulfill the mission of providing diverse voices. With media organizations cutting editorial staffs, special-interest groups are happy to step in and fill the content void. “If the publication isn’t paying, then somebody is,” Wasserman noted. He said newspaper opinion sections “have always been the recipient of largesse subsidized by undisclosed sources.”More problematic op-eds
Internet searches and a perusal of the AfPA web site turned up 12 op-eds with AfPA connections published since 2011. None disclosed drug industry ties. HealthNewsReview.org did not search for op-eds connected to other pharma-backed groups. Among those we found:
- To curb opioid addiction, give patients and doctors more choices for pain, in The Hill, by Roy Soto, M.D. Soto is identified as a member of the Alliance for Patient Access. Not mentioned is that the alliance is funded by two companies that make opioid alternatives, Pfizer and Purdue Pharma. Soto received $118,000 from drug companies in 2015, mostly from Mallinckrodt, maker of Ofirmev, an injectable acetaminophen that is considered an opioid alternative.
- Keep Physician-Patient Relationships Healthy in 2015, in the Chattanooga Times Free Press by Joseph Huffstutter, M.D. The piece supports state legislation to “require pharmacists to communicate to physicians which biological product they dispensed” to patients. Huffstutter’s identified as “a Chattanooga rheumatologist and serves on the National Physicians Biologics Working Group with the Alliance for Patient Access.” Huffstutter received $404,135 from drugmakers from August 2013 to the end of 2015, with large payouts coming from the makers of brand-name biologics such as Stelara and Simponi.
- Over-regulation of drugs not the right prescription in the Columbia (Mo.) Daily Tribune, by AfPA board member Srinivas Nalamachu, M.D. Nalamachu, who argues for an end to “onerous” regulations of pain medication, received more than $800,000 from drug companies between 2013 and 2015, according to Dollars for Docs. The publications gives no background information about the writer.
Editors might believe the op-ed label relieves them of responsibility. “They can post (submissions) with very little scrutiny as an op-ed,” said Lisa Graves, executive director of the Center for Media and Democracy, a corporate watchdog group. “It’s happened with a lot of papers. It’s a nod to the blog world.”Pharma is following the playbook of other industries
Op-ed opacity isn’t a new issue. In 2011, a corporate watchdog focused on energy policy, the Checks and Balances Project, campaigned to increase transparency on the Times op-ed page, citing a Times op-ed by Robert Bryce, a senior fellow at Manhattan Institute, which didn’t mention of the institute’s ties to the petroleum industry.
“We see The New York Times as the standard bearer of journalism, the nation’s paper of record,” Gabe Elsner, leader of the project, told the Columbia Journalism Review. “We think that they can set the standard and everyone else would likely follow. It’s a common sense practice that if there are people putting out opinions, readers should know who they are and where they’re coming from.”
Of course, not everyone agrees what constitutes adequate disclosure, and standards may be different in print due to space and technical constraints.
Former Times’ public editor Arthur Brisbane — whose old position incidentally was eliminated this year — grappled with that issue in a 2011 column, suggesting print editions include a writer’s current paid role while web versions include links to a writer’s organization and a document listing current paid positions.
Brisbane concluded: “These steps aren’t as simple as perhaps they sound, and, even if done well, some readers will ask for more.”
It seems clear more scrutiny is needed at a time when op-ed pages are being used as covert PR tools. “This is an instance where the editor needs to be the proxy for the reader, which really is the editor’s job,” Wasserman said. “If the editors aren’t doing that, then the reader is really up a creek.”
(And, yes, I know the subtitle above is a misquote. It’s been investigated.)
This brings up something that comes up again and again in my mind: both medicine and journalism are being hurt by being too rushed.
Our collective health would improve tremendously, in my opinion, if our health care providers and health care journalists were simply given more time to ply their trades.
Kudos to those organizations who get that, and kudos to the reporters below who — as our managing editor Kevin Lomangino describes it — pierce the veneer.Michael Joyce | Multimedia Producer How Big Business Got Brazil Hooked on Junk Food • by Andrew Jacobs, Matt Richtel, Neil Collier, and Ora DeKornfeld • New York Times
For the first time in history we now have more overweight people in the world than underweight. It’s the new malnourishment.
How this is happening is debatable; what isn’t debatable is that it poses a global public health challenge of daunting proportions.
This will likely become one of the most important health topics of the next half century, and covering the complexity of it — as this print and video collaboration does so well — will require investigative reporting with significant investments of time and money, as well as the courage to take on the multinational food giants.
Let’s hope we see more coverage of this caliber.Gary Schwitzer | Founder & Publisher How We Found Tom Price’s Private Jets: A tantalizing tip, followed by months of painstaking reporting, revealed the HHS secretary’s extravagant travel habits • by Dan Diamond and Rachana Pradhan • Politico.com
This was a terrific example of bulldog, gutsy, groundbreaking investigative journalism. This reporting team broke the initial story and kept adding new findings.
One observer wrote on Twitter: “This is why journalism matters.”
Another wrote: “Pulitzer Prize worthy detective work…and a GREAT read.”Which Country Has the Best Health Care System? Readers Respond • by Aaron E. Carroll and Austin Frakt • NYTimes.com The Upshot blog
The authors previously produced a cross-country comparison of health care systems; in this column, they answer reader questions.
The resulting piece is full of life and engaging language, balancing anecdotes with expert analysis.Kevin Lomangino | Managing Editor This Alzheimer’s patient stars in a multimillion-dollar ad campaign for pharma. He may soon be homeless • by Rebecca Robbins • STAT
Health care marketing — and especially prescription drug promotion — is full of sloganeering: “breakthoughs” and “gamechangers” abound. This piece digs far below the surface of a pharmaceutical industry image campaign dubbed “Go Boldly” and explores the crumbling life of one of its stars who suffers from early-onset Alzheimer’s disease.
The contrast between his real-life challenges and the image presented in the campaign is stark.
For me, this is what great health care journalism excels at — piercing the veneer of a crafted message to bring readers the complete story.
At HealthNewsReview.org a vital part of our mission is our systematic, criteria-driven reviews of both news stories and news releases. That’s not what you’ve read above. The above articles simply reflect our commitment to sharing some of the many examples of great health journalism we come across.
Here are 2 news stories we’ve systematically reviewed over the past few weeks that earned 5-stars by satisfying most of our 10 criteria:
• Very nice coverage of a study that addresses a longstanding and important question: Is combined hormone therapy (estrogen + progesterone) linked to premature death?
• Gradually exposing your infant to peanut products to prevent future allergic reactions is intensely debated. This story covers the important science behind this debate quite well.
[[ This is a content summary only. Visit my website for full links, other content, and more! ]]
The Nominating Committee was asked to present an official slate of three candidates to fill a mid-term vacancy on the NASW Board. Use the "read more" link for details on the candidates and the election process.Article type: GovernanceArticle topic: NASW news
Science writer Mary Roach describes her transition from a home office to a series of rented spaces shared with other writers. "I spent 10 years working out of my home and much prefer having an outside office to go to."Article type: ScienceWriters meetingArticle topic: Science writing news
The study was observational and offered up this association: People who ate less than 5 percent of their total daily calories at breakfast, based on their answers on a questionnaire about their eating habits, were more likely to show signs of early atherosclerosis. Atherosclerosis is a buildup of fats, cholesterol and other substances in artery walls that can restrict blood flow.What is breakfast?
Some outlets used appropriate language in their headlines:
Others took license and turned the finding into a recommendation for their readers:
How a Healthy Breakfast Could Curb Heart Trouble (Consumer Reports)
And yet, none of the articles we looked at asked a question that nutrition experts say is key: What did the participants eat?
“The biggest bee in my bonnet: There is no such thing as breakfast,” says Yoni Freedhoff, MD, a nutrition and weight management expert at the University of Ottawa and a HealthNewsReview.org contributor. When researchers (and journalists) use the word, he says, “They’re saying a bowl of Froot Loops is the same as a summer vegetable omelet. Both might be 400 calories of breakfast, but they make the conclusions totally meaningless.”
In addition, Freedhoff says, “The researchers were not controlling for what people were eating.”
In other words, if you want to accurately assess whether skipping the morning meal is linked to a health outcome, you would want everyone in the study to eat a similar diet, or be matched up by how similar their diets were. As much as possible, you would try to isolate the skipped meal as the only condition that varies among study groups.
So the study quality leaves plenty to be desired, but it still earned news coverage.
“This message about breakfast seems to get covered from one angle,” says Allison Dostal Webster, PhD, a dietitian and nutrition researcher at the University of Minnesota and a HealthNewsReview.org contributor. The angle — eating breakfast is good for you — seems irresistible to news outlets seeking wellness topics. “It’s frustrating to me because I know it’s not the whole story.”Just an association, after all
To their credit, most news outlets pointed out that this was an association study and couldn’t prove cause and effect. For more on why this matters, see Observational studies: Does the language fit the evidence? Association vs. causation.
But some ended up pulling their punches with expert comments that overreached.
The Reuters Health story started off strong by noting that the study was not designed to “prove that skipping breakfast directly causes heart problems.” It also offered up an alternative explanation: “…some people may have been skipping breakfast because they were obese and were trying to lose weight or improve other risk factors for heart disease…”
In a subsequent paragraph, however, the story practically erased its own caveat by using this quote from the author of an accompanying editorial in the same issue of the Journal of the American College of Cardiology: “Indeed, these studies have proved the age old concept that breakfast is the most important meal of the day.”
Actually, no. It doesn’t prove anything.
Likewise, the Consumer Reports story gives readers similar whiplash in a single paragraph with the help of a quote from the study’s senior author:
And though this study can’t directly prove cause and effect, the takeaway message on the importance of a healthy breakfast is clear. “If you introduce a good quality breakfast into your diet, it will probably help correct unhealthy behaviors later in the day,” Peñalvo says. “It’s a simple change that has the potential to change a whole lifestyle.”
No, again. The study didn’t measure the effect of eating breakfast on healthy behaviors.
Just because an expert source says it, doesn’t make it true. And the expert sources quoted here were either authors of the study or of the editorial, who presumably have a vested interest in publicizing their work. None of the four news reports we read quoted independent sources with regard to the study findings. (Reuters Health and Consumer Reports did quote nutritionists about healthy breakfast tips.)Other limitations of the study
The people who skipped breakfast also had a bunch of other unhealthy habits — their diets were nutritionally poorer, they drank more alcohol, and they were more likely to be smokers than the breakfast eaters.
“Some reporters did a pretty good job pointing out that the breakfast skippers had other unhealthy behaviors,” Webster says. And while the study controlled for some of these, “there may still be residual confounding factors,” she says, meaning there might be other factors that researchers didn’t measure and thus didn’t account for, such as physical activity levels or sleep quality.
Several news stories included the fact that only 3 percent of participants fell into the breakfast-skipping category. But only the Forbes story called this out as a limitation.
“It makes the margin of error wider,” says Webster.
Not only did Forbes call out a limitation others missed, it also left readers with a takeaway appropriate to the evidence presented.
So if you currently eat a fairly healthy breakfast, continue on. Those who skip it and are healthy in general may be OK to continue if it works for them. Do what feels right for your body.
In the 1990s, many families were torn asunder by allegations by a family member of recovered memories of childhood sexual abuse, evoked by what came to be recognized as harmful forms of psychotherapy. The notion of repressed memory, though widely discredited, has resurfaced recently “like a bloated corpse,” Mark Pendergrast writes. In two new books, Memory Warp, for general audiences, and The Repressed Memory Epidemic, a textbook, Pendergrast provides a contemporary perspective, along with recommendations for individuals and families, therapists, legislators, child protective agencies, and lawyers.Member blog name: Advance copy: Backstories on books by NASW membersArticle topic: Science writing news
Model Elizabeth Hurley recently passed out pink ribbons on a transatlantic flight.
Firefighters, football players, and even people’s dogs are donning the pink …
… all in support of Breast Cancer Awareness Month which kicked off this past weekend. It’s been going on for over 30 years and has become as much a part of October as Halloween. Some even call it ‘Pinktober.’
But through the years critics have gradually begun to point out that much of what news outlets produce each October is not news. It’s become more a perennial expectation to directly or indirectly encourage ‘early detection’ of breast cancer (like here, here, and here). Very little of this coverage ever mentions current evidence-based recommendations on who does — or doesn’t — benefit from screening.Pink vs. UnPink messaging
I’m calling these contrasting perspectives, for illustrative purposes, the Pink and the UnPink messages.
(It’s a device only. A way of establishing a spectrum of opinions and behaviors, not stereotype or pit well-intentioned people against each other. You’ll see why below).
The Pink Message is clear: ‘early detection of breast cancer saves lives’ … and promoting this notion has morphed into a form of cheerleading that has become the default for many politicians, celebrities, advocacy groups, and even some journalists.
There’s some truth to this narrative. Evidence does show that some deaths from breast cancer can be averted through screening. The Pink Message trumpets this relatively modest benefit and typically downplays or ignores potential harms and uncertainties, which are considerable. It’s estimated that between 20 and 50 percent of women over age 40, who are screened annually with a mammogram, experience at least one false alarm that leads to a breast biopsy.
Others will be treated unnecessarily, possibly with surgery or toxic chemotherapy, for a cancer that never would have caused them harm.
The UnPink Message, on the other hand, has not been widely embraced, is supported by many academics but few (if any) celebrities, has no discernible political backing, employs no brand or slogan that I’m aware of, and says this: promoting the injudicious use of breast cancer screening can lead to physical, financial, and emotional harms. The decision to get screened is a very personal one and women should consider it carefully before taking any action.
That the Pink message drowns out the UnPink message may not be surprising. But how this keeps happening is revealing. In many ways it says more about us, and how we communicate and feel about cancer, than it does about breast cancer screening itself.Is intuition a reliable guide?
“I think the early detection mantra offers simple clarity, but reality involves a lot of messy uncertainty,” says Steven Woloshin, MD, Professor of Medicine at the Dartmouth Institute for Health Policy and Clinical Practice and author of Know Your Chances, a book about understanding medical risks.
“A small number of people get a big benefit from screening – but many others only experience harms such as false positives and over-diagnosis. Critiquing what you call the ‘pink movement’ is not always welcome. It flies in the face of years of persuasive messages trying to convince women to get screened. The early detection argument is so intuitively obvious that it is hard to accept that intuition is an unreliable guide when it comes to screening. Screening skeptics are often seen as trying to take away something that is undeniably good, when in fact they are trying to encourage and empower women so they can make an informed decision that’s right for them.”
Woloshin knows the Pink vs. UnPink issue intimately. Five years ago he co-authored an opinion piece in The BMJ in which he took the PR tactics of one of the largest and best funded Pink campaigners in the US — the Susan G. Komen Breast Cancer Foundation — to task. He explains how their using 5-year survival rates to argue that ‘early detection saves lives’ is a manipulative, statistical trick that inflates survival benefits.
His explanation puts it more clearly than I can but, suffice to say, it boils down to Pink advocates arguing that mammography improves 5-year survival from “23% to 98%” while UnPink researchers point out the actual benefit is “a reduction in the chance that a women in her 50’s will die from cancer over the next 10 years from 0.53% to 0.46% … a difference of 0.07 percentage points.”
It’s an important distinction and we’ve raised it before.‘An entrenched narrative of doom-n-gloom’
“It’s very difficult for doctors to explain these statistics to a patient in a 15-20 minute visit,” says Ranit Mishori MD, a Professor of Family Medicine at Georgetown University School of Medicine. She thinks there’s another roadblock for getting people to understand the UnPink message: the language of cancer.
“There’s an entrenched narrative of doom-and-gloom with cancer that speaks to people and promotes the ‘catch-cancer-early’ approach. We all know someone who’s been affected by cancer and we’ve all heard the line: ‘if only they had caught it earlier.’
People hear the word cancer and automatically think ‘let’s remove it and be done’ without even hearing if their doctor advises that this is a slow-growing cancer — or non-cancer — that won’t spread or do harm. They just hear ‘cancer.’ I think we need to change the enormous connotation of that word and put it in context for people.”
Such distinctions are especially relevant to conversations about ductal carcinoma in situ, (or, ‘DCIS’) sometimes referred to as “stage 0 breast cancer.”Saturation and risk tolerance
In other words, non-intuitive statistics and a language barrier of sorts are handcuffing the UnPink message. It’s just not getting through.
Last week, survey results were published which looked at women’s awareness and attitudes about over-diagnosis and over-treatment of breast cancer. Drs. Sarah Gollust and Rebekah Nagler — of the University of Minnesota’s School of Public Health and School of Journalism, respectively — found the following:
- 16% of women were aware of the potential risk for over-diagnosis from breast cancer screening
- 18% of women were aware of the risk for over-treatment
- less than 1 in 4 women found statements warning about over-diagnosis and over-treatment to be believable
Rebekah Nagler actually specializes in understanding how messages about cancer and cancer screening are perceived by the public. She’s a good person to ask regarding why the UnPink message might not be heard. “It’s much more complicated than it looks,” says Nagler. But she thinks two factors are important to bear in mind.
“First, I think it could be as simple as exposure. We’ve been bombarded with the Pink message. Many more people have been exposed to that than the nuances of the UnPink message. So this results in an imbalance in coverage. Second, I think it also boils down to a very personal choice, and that has a lot to do with something else quite personal: risk tolerance. We’re often dealing with very individual differences in risk tolerance.”Stemming the Pink Tide
Nagler is quite right to bring up individual differences and individual choice. Even if two women are given the exact same scenario from their doctors, it’s important to point out there is no ‘right choice’. It’s their choice. Ideally, made collaboratively with up-to-date information from their doctor.
And it’s encouraging to see more groups that not only acknowledge this, but also challenge ‘pink-washing.’ One outspoken leader for the past 15 years has been the Breast Cancer Action Network, and their ‘Think Before You Pink’ initiative. We have written about their work before. It’s worth checking out their screening guide and anti-pinkwashing campaign.
There’s also been some thoughtful reporting through the years that is well worth revisiting:
A Growing Disenchantment with October ‘Pinkification’ ~ by Gina Kolata, New York Times
Ours is a culture susceptible to marketing. Colors, slogans, and clichés can mainline to our brains … sometimes with information, but too often with misinformation.
Breast cancer doesn’t need a color. Nor a catchy slogan. Or ribbons of fabric.
Breast cancer needs patients and doctors working together to make informed choices with the best information available.
That’s medicine. Not marketing.
Author’s note: For a lighter — yet informative — look at this topic, Dr. Ranit Mishori sent me this recently published video on over-screening with mammography. It’s well worth taking six minutes to watch it …
The Storygram series, in which professional writers annotate award-winning stories to illuminate what makes a great science story great, is a joint project of The Open Notebook and the Council for the Advancement of Science Writing. It is supported by a grant from the Gordon and Betty Moore Foundation.
Amy Maxmen’s story, which recounts how anthropologists worked with aid workers and residents to reconcile management of Ebola patients with the culture’s customs, won NASW’s Science in Society Award in 2016. Maxmen is a full-time reporter at Nature.
A great quarrel followed the death of a pregnant Guinean woman in June.Ledes can sometimes feel formulaic or overwrought in detail. For instance, they can have too much of that predictable “It was a dark and stormy night” feel, or they can feel too indulgent, luxuriating for too long in cinematic detail when the reader just wants to get to the point. But this opening sentence immediately grabs our interest without being wordy or contrived. The brevity has a punctuated feel that is impactful. And the phrase “A great quarrel” captures such depth and intensity, as if we’re about to sit back in a comfortable chair and hear an ancient tale. It also immediately establishes the enormity and gravity of the situation at hand; we would never write, “A great quarrel followed my husband’s decision to leave his socks on the floor—again.” Mourners refused to allow a team of outsiders dressed in what looked like white space suits to bury her Ebola-infected corpse. If she was to be saved from eternal wandering and reach the village of the dead, they insisted, her fetus must be removed.NASW SCIENCE IN SOCIETY JOURNALISM AWARD These awards honor and encourage outstanding investigative reporting about the sciences and their impact on society. This story was honored in the Science Reporting category in 2016.
Impossible, the outsiders said.Maxmen is artful with her use of short sentences, which make for pleasing changes in rhythm. These four short words convey a great deal without bogging the story down in quotes and longwinded explanation. Her virus-laden blood was far too contagious for anyone to cut into her body.Maxmen takes us straight to the heart of the story in the first couple of paragraphs. It’s a refreshing way into the narrative; in contrast to the common anecdotal lede, which can sometimes take longer to tell readers what the central tension of the piece is, we get a glimpse at the tension and complexity of the story right up front. In two brisk paragraphs, Maxmen hooks us on the conflict behind this heartbreaking situation and gives us a light dose of the biology behind the virus. This is a model lede.
Yet the villagers would not relent. In their traditional Kissi culture, a woman buried with her fetus disturbs the world’s natural cycles—beginnings and endings among humans, animals, and plants. In the same way, it is said, mixing the seeds of last year’s harvest with this year’s complicates the fertility of the crop, as well as the fertility of women. Even if the surgery was as dangerous as the outsiders suggested, the villagers worried that the results of disrupted natural cycles could be worse.Only three paragraphs in, readers already know that this is so much more than a story about infectious disease; this is about people, culture, tradition, spiritual belief, and more. And we begin to understand how much is at stake—it’s not solely the individual and cultural beliefs of the people in the region that are being threatened, but a people’s entire set of values and origin stories, and their livelihoods. Maxmen’s writing is so fluid and vivid that it’s easy to miss that she’s not describing a scene that happened while she was there; it occurred several months earlier.A burial worker sprays chlorine on a casket.
Exasperated, the district medical officerJust the use of this one word—“exasperated”—breathes humanity into the officer’s character and puts us there, almost. It also gives us a window into the tension between the cultural concerns of the locals and the very real medical emergency that health workers were facing. called an anthropologist originally from Cameroon to help him find a solution. From decades of experience in West Africa, Julienne Anoko knew there must be ways to make reparations to the spirits for ceremonies that could not be performed as tradition demanded.This introduces a protagonist and throws in an element of surprise—a researcher who is straddling these two worlds, from academia to full immersion in the cultural milieu of this region. The introduction of Anoko here helps keep the reader reading. And by alluding to the unresolved idea that “there must be ways to make reparations,” Maxmen signals that we are going to be taken on a journey. We get a real sense of dynamics high in the story—that the situation is changing rapidly. This piece already has all the elements of story, and we’re only a few paragraphs in. I was interested to learn in my interview with Maxmen that she had not been able to reach Anoko until very late in her writing of this piece, and that she added Anoko’s character in just before turning it in—a fortuitous addition that was key to the narrative.
“Eventually, I found a very old man whose grandfather was one of the ritualists in charge of reparations,” she says. “He had inherited the reparation ritual, and told us how it was to be done.”
The villagers would need a goat, 12 yards of white tissue, salt, oil, and rice.The narration here is so subtle: We aren’t being told about these people’s cultural traditions—we’re being shown, up close. And this list is beautifully vivid and charming. A goat, of course! Anoko, who was working for the World Health Organization, provided each item, and the community accepted them.Maxmen has left out unnecessary details that would bog down the story, such as Anoko’s specific title at the WHO, and how Anoko actually learned that these were the correct ingredients—much less how she tracked them down. Maxmen keeps us anchored there in time, providing just enough detail to keep the story moving. At sunset, she watched the ceremony begin with the distribution of smooth kola nuts, symbols of respect. A world away, burial workers in sweltering hot Tyvek suits hygienically laid the pregnant woman to rest.Maxmen’s writing masterfully demonstrates the old adage about showing—through actions and scenic details—rather than telling. Brief as it is, the comparison between the sunset ceremony and the workers’ sad undertaking makes for a powerful juxtaposition.
Anoko’s solution was the exception until recently. Scenes of conflict were frequent in Guinea, Sierra Leone, and Liberia—the three countries hardest hit by Ebola—Here Maxmen brings us essential context.as medical authorities tried to separate the dying and the dead from their communities.This image is so evocative and visceral—we can feel the dead and dying being torn from their loved ones. Ambulance drivers and burial teams were pelted with stones.
In the worst attack, eight people distributing information about Ebola in Guinea were killed. Villagers often retreated with ill relatives into the forest, where they could hide—and where the deadly virus then quickly spread.This line helps readers understand the scope and seriousness of the problem, and how interwoven the cultural aspects are with the spread of the disease—the anthropology angle of this story isn’t simply a quaint or convenient sidebar to the disaster.
“The problem was that the people handling the intervention only looked at this as a health issue; they did not try to understand the cultural aspects of the epidemic,” Anoko says.This quote is well-timed; it summarizes the conflicts that the story presents and serves as a smooth entry point into the billboard / nut graf of the story. And it gives us a human voice and a breather at the very point we need it.
But Anoko and others familiar with local customs helped health officials realize that they could not curb Ebola until they found ways to accommodate deeply held beliefs about the obligations of the living to the dying and the dead. As health workers and burial teams have altered their procedures, and as political, tribal, and religious leaders pressed people to adapt their traditional ceremonies, the spread of Ebola has begun to slow.This is a classic nut graf, crafted subtly enough that it doesn’t give too much away, doesn’t slow the story, and yet telegraphs where the story will take us—to the idea that there is a direct link between respecting cultural practices and slowing the spread of the disease.A hospital employee standing in the morgue where he prepared Ebola-infected corpses for burial. Science Confronts Culture
In the three countries hit hardest by Ebola, preparations for burial typically are carried out by community members who handle the dead with bare handsa staggeringly telling detail, rather than by doctors, morticians, and funeral home directors. People were unwilling to have those practices casually tossed aside. That worked in Ebola’s favor. As death approaches, virus levels peak.Ebola is personified here as a Grim Reaper of sorts, making the part about molecular biology feel personal, at our fingertips. And Maxmen’s use of short, almost choppy sentences lends cadence and suspense. Anyone who touches a droplet of sweat, blood, or saliva from someone about to die or just deceased is at high risk of contracting the disease.
To health authorities, the solution was simple. With so much at stake, science eclipses religion: Risky rituals must end.Here the tension peaks—we understand how deeply held these rituals are, and how deadly and contagious the disease is. At this point in the piece, it’s almost tempting to feel hostile toward the people in space suits. If I had been editing this story, I would have liked to see the perspective of the health workers included—to understand their points of view and what it’s like to be in their shoes. But as Maxmen notes in the Q&A, their absence from the story works, in that it serves to amplify the starkness of their role as health workers who must treat the bodies of Ebola victims in a methodical, cautious, routine way.
“People were expected to go from one end of the spectrum to the other; from washing the bodies by hand, dressing them, and holding elaborate ceremonies, to having a corpse in a body bag and no goodbye,” says Fiona McLysaght, the Sierra Leone country director for a humanitarian organization called Concern Worldwide.This quote sums up the conflict and is utterly heartbreaking.
Spirituality runs wide and deep in Sierra Leone, Liberia, and Guinea. The population consists mainly of Christians and Muslims. Christians close the eyelids of the dead, wash and dress them. Muslims wash the dead as well, but wrap them in a white cloth. There are also rituals particular to ethnic groups—such as the Kissi, the Mende, the Sherbro, and the Kona—as well as secret societies.In one sweeping paragraph, Maxmen highlights the religions and spiritual beliefs that coexist throughout the region. This treatment provides readers with essential context.
The details of tribal and secret society ceremonies are closely held, but some hints come from locals and anthropologists with regional expertise.
According to anthropological accounts, the Kissi, for example, sacrifice an animal over a stone at the dead person’s tomb and then place the stone at an altar devoted to ancestors. The Sherbro may examine the body to determine whether the deceased had been a witch who caused harm. If so, the spirit must be rendered innocuous before burial, lest it cause crop failures and other misfortunes.
A third layer of ritual comes in with secret societies, groups that conduct clandestine ceremonies throughout the region. Secret society leaders must be buried in a particular manner to transfer their powers to a successor. Unwilling to go into detail, Sidikie Sankoh, a youth leader in Freetown, tells me gravely, “If these rituals are not done, there are consequences.”This quote comes not a moment too soon; up until this point, we’ve only heard from experts. The people being affected by Ebola still feel largely distant. The quote from Sankoh conveys more than just what it says—it telegraphs how suspicious the locals likely are of outsiders, and how intimate and culturally valued their secrets are.
These layers of belief mean that death in West Africa is accompanied by a complex and sacred blend of rituals. If they are ignored, the dead are thought to wander the Earth eternally and plague the community. To Westerners, the rituals ring of a forgotten past. But they serve the same purpose as death rituals around the world: closure through saying goodbye to loved ones before death, and paying respect to the deceased.This sentence serves a critically important function for Western readers—it reminds us that these strange rituals aren’t so foreign, that we have our own rituals that would seem foreign to outsiders. This also serves to make the piece personal—to prompt readers to empathize and put ourselves there. Through this, Maxmen also effectively avoids the trap of characterizing West Africans as exotic to Western readers.Fliers on the wall of a public hospital commemorate young nurses and lab technicians who have died of Ebola. Distrust Thwarts Compromise
Neither of these tenets was respected in the Ebola response until recently.This sentence gives the story immediacy—it tells readers why they’re reading it now.
Throughout most of this outbreak, there were not enough beds and staff to care for the sick, so overwhelmed nurses sent the ill from one hospital to another—without keeping track of who went where. Those who died were often whisked to unmarked graves. Families were left not knowing whether their loved ones were alive or dead—and, if they were dead, where they had been buried.This information feels a touch buried in the story—it would have been helpful for the piece to nod at these issues higher up, while we are learning about the deep skepticism that the locals feel towards outsiders and authorities.
These disappearances stoked conspiracy theories that Ebola was a hoax. In one, doctors were said to be killing patients to steal their organs. The less people believed that Ebola was real, the less likely they were to bring deathly ill relatives to clinics and to stop honoring their dead relatives in the traditional way.This section adds another rich layer of complexity to the story: Up until this point, the story has been about religious beliefs, rituals, and burials. Here we learn that there are other forces at play—deeper misunderstandings and misgivings. Not only are the health workers up against suspicion from the locals, they are dealing with a dangerous disease that some don’t even believe is real.
In September, October, and November, governments and international aid agencies ranted and raved about stubborn villagers.Note the smooth conceptual transitions that Maxmen uses to link the end of one paragraph to the start of another. In the preceding paragraph we learn that the villagers have deeply ingrained suspicions, in some cases for good reason; naturally, in the next paragraph, we hear that the authorities are understandably exasperated with the locals’ unwillingness to cooperate. The juxtaposition is lovely and satisfying. Meanwhile, anthropologists pressed them to understand the beliefs of the people whose attitudes they wished to change.The anthropologists, personified by Julienne Anoko and others, are the protagonists in the story, helping to mediate and bring a shift of perspective on both sides. Maxmen captures the dynamic of a changing situation, which further serves to put us there.
“You have to take into account a history in which local people have learned to distrust the government,” says Paul Richards, an anthropologist at University College London who has worked in Sierra Leone for 40 years. “It’s a situation not unlike that in Ferguson, Missouri, where a legacy of slavery, exploitation, disregard, and abuse leads people to think their own solutions are better than those from the outside.”This analogy hits home in a very personal way—helping us to empathize and relate with how such deep distrust was bred.
He adds, “It doesn’t help that outsiders are dressed in astronaut suits.”The space-suits visual is so stark, serving to emphasize just how alien these outsiders seem to the locals.A nurse outside of a tent where patients suspected of Ebola wait to be seen.
Richards knows compromises could be reached. He remembers that ceremonies were altered during Sierra Leone’s brutal “blood diamond” civil warThis provides important historical context, demonstrating a precedent for compromise and coordination between locals and health authorities. and suggests those same ceremonies might be revived now. Back then, people found ways to honor the dead they had abandoned as they fled their villages.
“Burial rituals were flexible,” he says. “The spirits are totally practical!”A brilliantly charming quote that leaves us to wonder whether Richards himself feels torn between the two worlds.
One hot afternoon in eastern Sierra Leone, Haille James, of the Kissi tribe, tells me what his people did when a body could not be found.This is the first time that Maxmen inserts herself in the story. Reconstructing scenic and anecdotal details to unspool a narrative when a writer isn’t present is a weighty responsibility, and it’s important to not try to “trick” readers by making it sound like we’re present when we’re not. Maxmen accomplishes this so skillfully and artfully that I was surprised—in a very good way—to realize that much of the narrative that’s woven through the story up to this point occurs prior to her December 2014 arrival in Sierra Leone.
“You would go to the place where you think the person died and leave a piece of metal—four days for a man and three days for a woman,” he explains. “After that, you hold the metal on your head and bring it to your home, where you cover it. Then you can cry, bury it in a place, and pray.” Tamba Aruna, a mental health counselor in Sierra Leone and a member of the Kono tribe, says similar rituals occurred in his community during the war, only with a stone instead.Pastors, Imams, Chiefs Stop Rituals
Nearly five thousand people had died of Ebola by November in the three hardest hit countries, and the contagion was still rising in Sierra Leone.Here, Maxmen gives us essential statistics to show us the gravity of the situation. This could have come higher up in the piece. Organizations involved in Sierra Leone’s Ebola response claimed that 70 percent of new infections in that country stemmed from funeral rituals, although they cited no particular study.This is a staggering number, and it elicits a sense of alarm and gives us a deepening understanding of the problem’s magnitude. Erring on the side of caution, the government mandated that in Freetown, the capital city, all corpses had to be buried in body bags with sterile procedures—whether or not they were known to be infected with Ebola.
Finally, officials reached out to chiefs, imams, pastors, and traditional healers for help and advice on how to change people’s minds about burials.
By then, many of these community leaders needed little convincing. In Freetown, at the modest headquarters of Ahmadiyya, an Islamic sect, Munnirou Abyusuf explains how he came to believe the disease was real. Ebola could be a curse or some kind of witchcraft, he thought at first, when the outbreak began in the east of the country. But then it killed dozens of health workers, including virologist Sheik Umar Khan.Here the story comes full circle. We now learn just how rampant Ebola was, and we see a layer of the onion being peeled away. It’s no longer the locals versus the outsiders.
“When Dr. Khan died,” he says, “I thought, ‘Oh, this is a very serious thing.'”
Abyusuf consulted his holy books for guidance on how to handle burials given the danger. In The Life and Character of the Seal of Prophets, he learned of a leprosy contagion in ancient times.Maxmen’s story contains a rich plethora of cultural anthropology, infectious disease, history, and a nod to ancient prophets. And through it all, Maxmen subtly makes us feel like we are seeing it all in real time. For example, she takes us into the thought process of Abyusuf, making him feel personable and approachable, and we can almost picture him leafing through his holy books—but she does this in just a few sentences, without excess detail.New land was constantly cleared to make room for graves near this cemetery in Freetown, Sierra Leone
“When the epidemic started, the holy prophet of Islam said that people should stay put,” he says, explaining that Muhammad advocated prayers for the deceased in absentia. Abyusuf went to his congregation and explained what he had learned: “I told people, this is not the first plague. You do not need to wash the corpse. You can pray in absentia. The rules are not absolute.”Here again, Maxmen’s access to Abyusuf and his succinct, plainspoken language give this story a very intimate quality.
Pastors promised their congregations similar forgiveness, and chiefs asked their people to cease all secret society rituals. Meanwhile, humanitarian organizations and the government enacted “safe and dignified burials,” during which people could pray briefly for their loved ones, while standing two meters (6.5 feet) from the white body bag.The structure of this narrative unfolds in a fairly linear way, with no fancy structural devices, because the story is impactful enough on its own. And using a chronological structure works well for this piece because it plays into Maxmen’s strategy of making readers feel present as the epidemic is unfolding and the burial rituals are changing.
They also hired liaisons to discuss the precautions with mourners. The liaisons try to honor reasonable requests. In some cases, that means burial workers in Tyvek suits dress the dead in outfits chosen by families before the corpses are placed in body bags. In other cases, money or jewelry is placed in body bags as a “toll” that the deceased must pay to cross over to the village of the dead.
When I visited the largest cemetery in Freetown, King Tom, it was mid-December and the problems with burials had shifted.This is the first scene that Maxmen sets in the story through her own eyes. According to government statistics, almost all corpses in the Freetown area were hygienically placed in the ground by burial teams.
In King Tom cemetery, about 50 bodies were planted in fresh, shallow pits each day. Dirt and hay particles hung in the humid air.This is a cinematic and sensory-filled section; we can nearly taste and feel the dirt and the hay, and the image of the freshly dug pits is so visceral. In the space of an hour, several vans rumbled over the dirt to deliver new body bags. Small groups of men and women on foot flowed into and out of the cemetery after quick prayers. They appeared bewildered by the overwhelming scene.
The landscape resembled a construction site, with mounds of dirt and constant digging. A tractor at the periphery cleared piles of bramble and trash to make room for new graves. Now, the city faced a new issue: The cemetery had expanded to three times its former size and was nearly out of space.
Andrew Kondoh, who had been hired by Concern Worldwide to be a liaison between burial teams and mourners, met me in the graveyard.It’s atypical, and usually inadvisable, to introduce first person so late in a story. But to my mind, the scene Maxmen describes here is so moving and personal that it works nonetheless. In fact, introducing herself into the narrative much earlier might have been intrusive, robbing readers of the opportunity to feel like they were sitting in the front row, watching the tensions play out between the locals and the authorities. There’s also an entirely practical reason why Maxmen could not have introduced first person earlier in this chronologically structured story: She wasn’t in Sierra Leone until midway through the story. His broad, easy grin belies the tragedy he’s witnessed.
At 13 years old, he handled corpses during Sierra Leone’s civil war. Massacred bodies piled up outside of his town in the eastern region of Kenema. Not wanting people to stumble over the dead, or dogs to pick them apart, he spent his days cordoning off the bodies. “It was born in me to do community work,” he says. “I know how to console people.”
Kondoh counsels the young men and women who carry bodies to the morgue and graveyard. Because they handle Ebola-infected corpses, many have been evicted from their homes by frightened landlords and abandoned by their partners.
“Women at the corner will not sell me water. They call us ‘Ebola people,'” one burial worker tells me. Kondoh pats him on the back, and the two chuckle at the term. Kondoh adds, “If we don’t laugh, we’ll cry.”This is a deeply moving scene. And Maxmen’s light use of humor feels touching, letting us share a bit in Kondoh’s vulnerability.Andrew Kondoh comforted people as their loved ones were safely buried during the Ebola crisis.
Ali Kamara, a burial team supervisor, says that families no longer fight with his team when they come for the dead.It’s an unorthodox choice to introduce a new source in the last paragraph. In journalism school, they might say that’s a no-no—that it can be clunky and jolting to introduce a new voice to readers as the story is coming to a close. But breaking that rule is worth it in this case, because Kamara’s quote brings the piece to such a satisfying ending, punctuating the total shift in people’s attitudes and behaviors that occurred as a result of Ebola’s devastation.“Before, people were hiding their corpses for two to three days,” while they washed the corpse and performed other rituals, Kamara says. “Now, it’s totally different. They call me at all hours and just say, take the body away.”Though Maxmen’s first-person reporting for this story took place over the month of December 2014, throughout the entire piece she deftly creates a sense of action and change, making us feel as if we’ve experienced the cultural shift that evolved over several months, and at different points for different people. This is a tricky feat, being true to a complicated timeline while also telling the story in a way that is comprehensible and engaging. In doing so here, Maxmen brings powerful, distant events to life in a way that feels immediate and accessible.
Amanda Mascarelli is the managing editor of Sapiens, an online magazine devoted to covering anthropology. Prior to taking on this role in May 2015, Mascarelli spent a decade as a freelance journalist. Her stories have appeared in Audubon, Nature, New Scientist, Science, Science News for Students, The New York Times, The Washington Post, Yoga Journal, and other publications. Follow her on Twitter @A_Mascarelli.
The post Storygram: Amy Maxmen’s “How the Fight Against Ebola Tested a Culture’s Traditions” appeared first on Showcase.
The following story diagram—or Storygram—annotates an award-winning story to shed light on what makes some of the best science writing so outstanding. The Storygram series is a joint project of The Open Notebook and the Council for the Advancement of Science Writing. It is supported in part by a grant from the Gordon and Betty Moore Foundation. This Storygram is co-published at the CASW Showcase.
I remember reading the 1995 bestselling book The Hot Zone in college as a biology major and budding researcher, and being haunted by the visceral descriptions of the gory deaths that highly infectious diseases like Ebola bring on their victims.
So when an Ebola epidemic swept through West Africa in 2014–2016, resulting in the deaths of more than 11,000 people, I was gripped by the absorbing stories that were being reported from the ground by journalists like Amy Maxmen, who wrote more than 15 pieces on Ebola from Sierra Leone—ground zero for the epidemic—for outlets like National Geographic, The Economist, and Newsweek.
We journalists often long to put ourselves in such intense reporting situations, because this type of shoe-leather journalism brings us closer to understanding our world, our sources, and our humanity. In a time of dwindling budgets, with fewer and fewer publications subsidizing reporting trips, Maxmen’s opportunity (through a grant from the Pulitzer Center on Crisis Reporting) to travel to the region during the height of the Ebola epidemic was rare and enviable. The desire to report from the field on important, human-driven stories is the reason many of us became journalists.
Maxmen took three trips to Sierra Leone, extending her first stay from 10 days to a month over the holidays because she was so moved by the number of important stories that she felt needed to be told. She recalls emailing her editors in the States on Christmas Eve with urgency about news that she thought needed to be covered and feeling annoyed when they didn’t immediately reply. “Where I was, nobody was talking about Christmas,” she told me.
Maxmen’s story on burial rituals, one of a series of Ebola pieces she wrote for National Geographic, puts a human face on the cultural crisis that faced many in West Africa as the outbreak raged on. It is an uncommon luxury to spend time teasing apart an award-winning story to glimpse insights into what makes the piece impactful and impossible to put down. Maxmen is a masterful narrator, using vivid storytelling in subtle ways to put us right into the unimaginably sad circumstances she encountered. Below is an annotated version of Maxmen’s story, which reflects what I learned as I peeled back the layers. Read on for my conversation with Maxmen, who shares the backstory behind her reporting in West Africa and the lessons that have shaped how she approaches her work.
In an era of widespread calls for action to tame skyrocketing prescription drug costs, one organization consistently opposes measures to rein them in: the Alliance for Patient Access (AfPA).
The AfPA claims it’s trying to ensure patients have access to FDA-approved therapies. However, its track record shows it pushes platforms that help drug companies’ bottom lines. HealthNewsReview.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.
To advance its agenda, the AfPA often uses politicians and the news media, and rarely are its deep pharmaceutical connections called out.
Recently, for example, STAT ran a ghostwritten op-ed piece from an AfPA board member that extolled a $24,000-a-year drug to treat psychosis related to Parkinson’s disease. The op-ed was retracted after HealthNewsReview.org discovered and reported that it was ghostwritten.A track record of opposition to limits on drug costs
National pushback against high drug costs has coincided with an expanded role for the AfPA. At its inception in 2006 the AfPA claimed to represent a few dozen neurologists who treat Parkinson’s patients. Today it purports to have more than 800 physician members with “working groups” in seven issue areas. In an email, an AfPA spokesperson said its membership “is comprised of policy-minded physicians and healthcare providers” who “contribute their time as volunteers as opposed to financial dues.” Corporate contributors have nearly doubled in number since 2015, based on lists found on the group’s website.
Critics say the AfPA and other industry-funded nonprofits oppose even modest measures to limit spending on expensive drugs with marginal benefits, pushing up costs for everyone and threatening prospects for a viable system in which everyone gets adequate care.
“They’re trying to shore up what is obviously an otherwise losing public opinion climate on drug pricing,” said John Rother, president of the National Coalition on Health Care, which advocates for affordable care. Rother runs the coalition’s Campaign for Sustainable Rx Pricing.
The AfPA’s general message is that the problem isn’t high drug costs, but rather payers steering patients to drugs not picked by their doctors, through what it calls “non-medical switching.” It calls for “patient-focused” approaches to drug coverage.
David Mitchell, founder and president of Patients for Affordable Drugs, isn’t buying it.
“These groups exist to help sell medication,” Mitchell said. “I don’t love insurance companies. If you’re a patient, they can be a real pain in the ass. But when you’re attacking insurers and government, you’re really attacking the companies and the taxpayers who are trying to grapple with high prices.” (Patients 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.)
As for these criticisms, Susan Hepworth, an AfPA spokesperson who responded to HealthNewsReview.org’s queries, said “AFPA recognizes that policymakers have a tough job trying to balance the demand for health care with finite resources. However, decisions policymakers reach will be better policy if it is informed by the perspectives of those on the front line of clinical care: physicians and their patients.”A pharma friendly platform
What does patient-focused advocacy look like, to the AfPA? In recent years, the organization has:
- run ads pressuring Congress to oppose value-based purchasing for Medicare Part B drugs,
- issued white papers pushing back against opioid-prescribing restrictions
- made a video endorsing legislation that would block health plan policies that encourage patients to try the most cost-effective drug therapies first,
- conducted a policy forum that raised questions about the safety and efficacy of generic versions of biologic drugs,
- compared coinsurance for high-end cancer drugs to “rationing,”
- used social media to promote co-pay coupons that reduce patient cost-sharing,
- and issued news releases that attack insurance payment denials of very expensive, marginally effective cholesterol-lowering medications as “dangerous.”
The Alliance for Patient Access is operated by a public affairs firm, Woodberry Associates LLC, and the two entities share addresses and management, public documents show. They were both created by former Iowa state GOP chairman Brian Kennedy in 2006, just after he lost a congressional primary bid.
Kennedy is both Woodberry’s president and executive director of the AfPA and at least two offshoots, the Global Alliance for Patient Access and the Institute for Patient Access. He’s listed as a “counselor” of a third affiliate, the Coalition for Clinical Trials Awareness.
In 2015, the most recent year for which data is available, Woodberry and its employees took in more than $900,000 from the AfPA and related groups in payment for consulting, rent, and other services.Who donates to the AfPA?
Most of the non-profit organization’s funding comes from the drug industry, not physicians. A list of “associate members and financial supporters” linked to its web site contains 26 pharmaceutical companies and a biopharmaceutical trade group, the Biotechnology Industry Organization (BIO). The AfPA also has received more than half a million dollars from the Pharmaceutical Research and Manufacturing Association (PhRMA), a drug industry trade group, since 2008, according to PhRMA disclosures.
Annual dues for these corporations and trade groups are at two levels of $25,000 and $50,000, said Hepworth, the AfPA spokesperson, who is also a Woodberry employee.
Companies funding the AfPA sell some of the nation’s most expensive drugs. They include:
- Abbvie (Hepatitis C drug Viekira Pak, $83,319 for a 12-week course),
- Vertex (cystic fibrosis drug Orkambi, $259,000 per year),
- Bristol Myers-Squibb, (Hepatitis C drug Daklinza, $63,000 for a 12-week course),
- and Mallinckrodt Pharmaceuticals (H.P. Acthar, used for multiple conditions including rheumatic disorders and multiple sclerosis, $205,681 per year).
The group’s six physician board members all have significant financial ties to drugmakers, according to ProPublica’s Dollars for Docs and published research disclosures.
For example, according to the Dollars for Docs database, AfPA board vice president Srinivas Nalamachu, MD, received $811,352 in 2013-2015, nearly all of it related to opioid drugs or drugs that treat side effects from opioids. He is on the AfPA’s working group for pain therapy access. In April 2017, the Kansas City Star identified Nalamachu and his former partner, Steven Simon, MD, as among the top-paid promoters of drugs to treat opioid-related constipation. The Star subsequently reported in July that their clinic was raided by FBI agents in connection with an investigation of Insys Therapeutics, an opioid maker accused of paying kickbacks to physicians who prescribed its drugs. The FBI raid focused on Simon’s patient records and did not involve Nalamachu, according to the Star.
Asked how the group can claim to advocate for patients when it’s funded by drug companies, Hepworth responded in an email: “Physicians, healthcare providers, patients, and manufacturers of medicines all share the same goal: ensuring that patients have access to FDA approved therapies. So it’s not surprising that they support AfPA’s objective. Each brings a unique perspective and AfPA provides a platform for physicians and patients to inform policymaking with their respective perspectives.”Vested interests don’t always make it into news coverage
Journalists don’t always report the vested interests behind these views.
In Politico’s Prescription Pulse newsletter, covering a positive European study about a biosimilar drug, an article quoted the AfPA’s offshoot, the Global Alliance for Patient Access, saying biosimilars “may disrupt patients’ care and lead to higher costs in the long term.” Politico didn’t disclose that the Alliance is funded by brand-name biologics companies that could lose if biosimilars, which are cheaper generic versions, gain market share.
Similarly, Bloomberg’s Bureau of National Affairs ran a story about legislation to combat the opioid epidemic, in which the AfPA raises concerns about “unintended consequences patients with legitimate medical needs may face because of arbitrary restrictions placed on prescribing.” It didn’t mention that the AfPA takes money from at least five opioid makers: Purdue Pharma, Endo Pharmaceuticals, Johnson & Johnson, Allergan and Teva Pharmaceuticals Industries.
Rother, of the National Coalition on Health Care, said examples like these amount to a false equivalence in news coverage, treating both sides as if they have equal merit. “I think the role of journalism is to expose who’s actually behind these kinds of what I’d call fake groups. They are front groups that are there only to protect in the interests of manufacturers, not consumers,” he said.Alliance-sponsored forums involving journalists
The Alliance for Patient Access also has elevated its profile by sponsoring policy forums involving journalists.
STAT biotech reporter Damian Garde moderated the AfPA’s National Policy and Advocacy Summit on Biologics and Biosimilars in April. A tweeted photo from that meeting (below) shows Garde sitting next to Robert Yapundich, MD, whose ghostwritten op-ed later published in STAT failed to disclose more than $300,000 in payments from the drug industry.
In 2015 POLITICO hosted a similarly-themed AfPA-sponsored panel, Biosimilars: Can They Break Through?.
— Kathleen Arntsen (@KathleenArntsen) April 12, 2016
Both events focused on why biosimilars have been stalled by regulatory hurdles in the U.S. The AfPA receives funding from several makers of brand-name biologics including Pfizer, Johnson & Johnson, Amgen, AbbVie and Sanofi.
Asked about STAT’s participation with the AfPA and other industry partnerships, Executive Editor Rick Berke told HealthNewsReview.org Managing Editor Kevin Lomangino: “Every partnership we enter into, we think about the optics and appearances. We’re comfortable with the decisions we’ve made. They may not be up to your standards but they’re up to our standards.”
Politico spokeswoman Katie Pudwill said sponsors are allowed to give opening remarks but “don’t participate in or design the conversations so their interests don’t affect the outcome of the debate/discussion.” She added: “We have editorial independence over the conversations that take place once one of our journalists takes the stage.”
Some were quick to criticize these media organizations. “Politico and STAT were had,” Mitchell, of Patients for Affordable Drugs, said. “It wasn’t a legitimate discussion. It was a paid-for pharma promotion of this scare tactic that you mustn’t take a biosimilar because it won’t do the same thing as a branded biological.” See more on our coverage of tactics used in the biologics vs biosimilars tug-of-war.‘Patient Access Champion’ awards handed out to Congress
The AfPA attempts to harness physician voices to sway public policy, holding briefings and advocacy training for “policy-minded physicians” who want to “challenge restrictive health policies.” It claims to run a forum of about 40 physician-legislators in 23 states. “With respect to health care issues, physicians serving as elected officials are often in a unique position to shape policy,” it says.
The AfPA offers cover for lawmakers who carry out the pharmaceutical industry’s agenda, some observers say. In one striking example, the group accepted $7.8 million in 2014 and 2015 to give Medicare “Patient Access Champion” awards to members of Congress, according to its IRS disclosures for those years. The AfPA annual report shows that 50 awards were presented. The awards appear to be a way to thank cooperative legislators while also pressuring them and others to enact the AfPA’s policy agenda.
AfPA spokeswoman Hepworth would not tell HealthNewsReview.org who contributed those millions, citing a “general policy” of not disclosing who contributes to particular projects.
In some cases, framed “Patient Access Champion” certificates were presented in district offices, with representatives from other health and senior citizen advocacy groups invited to attend and pose for photos. Many Congress members boasted of their awards in social media, newsletters, and press releases, citing them as evidence that they protect the rights of senior citizens and stand up for the middle class. Here’s a tweet from the AfPA showing U.S. Sen. Debbie Stabenow, D-MI, accepting her award:
— AfPA (@patientaccess) April 2, 2015
A portion of the money went to buy newspaper ads and mailers that urged senior citizens to contact their representatives to encourage them to “protect” Medicare funding for prescription drugs, HealthNewsReview.org found.
Some say those awards and ads shielded lawmakers from criticism for voting against Medicare cost controls, such as an independent rate-setting board and other measures.
“If they are called out for undermining patients’ rights, they can say, ‘No, I received an award for protecting patients’ rights.’ A lot of citizens don’t have time to sort it out,” said Lisa Graves, executive director of the Center for Media and Democracy, a corporate watchdog group.
The AfPA does not have to disclose who funded its bid to influence Congress, or anything else it does, because it’s organized as a not-for-profit under a section of the IRS tax code reserved for “social welfare” organizations, known as 501(c)4. Unlike super PACs, which are independent political committees, nonprofits don’t have to reveal their financial backers. They’ve become the preferred option for groups who want to influence politics without having their identities publicized.
Some advocates want more transparency for nonprofits with 501(c)4 status, which have proliferated since the 2010 Citizens United court decision empowered them to participate in politics. The IRS says politics can’t be their primary function, but that rule is rarely if ever enforced.
For now, said Mitchell, “For consumers, it’s caveat emptor.”
In August of 2012, Ronald Postuma, MD, a neurologist from McGill University, performed a study along with several coauthors which suggested that caffeine improves debilitating movement symptoms in people with Parkinson’s disease.
Yesterday, Dr. Postuma published his long term follow-up results in a larger group of patients which — contrary to the previous study — did not show any improvement with caffeine.
Consumer-focused news coverage of these new “negative” findings – as of today – is not nearly as brisk as coverage of the “positive” findings was five years ago.
But of the other major outlets who jumped on the story five years ago, none has posted coverage that we could find about the new study. Why?What’s Wrong with Uncertainty and Caution?
Before we can speculate as to why coverage is leaner this time around, there are some important lessons to consider from the 2012 coverage.
Looking back, I would say that the coverage was quite good. In fact, several reporters — as well as the writers who penned the news release for Neurology (which published both the 2012 and 2017 McGill research) — were appropriately cautious in including the following:
- A few quoted author Postuma as warning that the 6-week duration of the study, as well as the study group size of just 61 Parkinson’s patients, made it difficult to know if the positive effects would last.
- Likewise, Postuma appropriately speculated that tolerance to caffeine may limit its long term benefits on movement symptoms
- Many reporters included the fact that the existing treatment of choice for movement problems in Parkinson’s Disease — levodopa — has a benefit 3 to 4 times greater than the documented caffeine effect.
This is good reporting. And it led many journalists to make the following caveats quite clear: more research is needed, with more subjects, and more time.
And as we now know, they were right to do so.Why This Matters
These two studies, not just separated by 5 years, but also distinguished by contrary findings, teach us some valuable lessons.
First, this is how science progresses. It’s not so much about clear-cut answers as it is about constantly questioning. In this case, the 2012 results were promising for a “positive” effect on a disease that sorely needs some good news. But, the researchers (and many of the journalists) were not satisfied and needed to know if these results were verifiable and reproducible. It ends up they were not. Although that “negative” result may not feel as optimistic or impactful as the previous “positive” result, it’s still important information. It’s not only more accurate information, but it will help focus further research.
And this brings us to an important point about so-called “negative” results. When medical journals, academic PR departments, or news organizations avoid publishing negative results — presumably because they lack the allure or gravitas of positive results — they’re not just revealing ignorance of the scientific method, but are also severely compromising public opinion and discourse by providing incomplete information. People make decisions about their health based on what they read in the news; if that news is slanted toward positive findings, the public doesn’t have a solid foundation for making good choices.
We’ve covered this before (HERE).“All My Patients Started Drinking Coffee!”
Looking back on the quotes provided by Postuma – both this week and five years ago – it struck me that he presented his work cautiously and without self-promotion. This type of restraint isn’t necessarily the norm among researchers discussing their work. I asked him if there were any differences between the coverage five years ago and this week that struck him.
“I’d guess we got two to three times more coverage of our positive findings five years ago,” said the McGill neurologist. “That positive results are seen as news or more clickable, while negative results are not news, doesn’t surprise me.” But he was surprised by something else:
“I always try to include caveats and limitations. And most of the reporters included them and were accurate. But, nonetheless, all my patients started drinking coffee. Even when I told them these were just preliminary findings. That surprised me. This one doesn’t fall on the reporters. Because between what they write, and what goes into people’s heads, there’s often a disconnect. Readers often seem to want to remember one or two things, then our warnings and caveats disappear, and they select what becomes fact in their brain.”
Postuma’s mea culpa notwithstanding, doesn’t some of this fall on the reporters? As well as the PR people and everyone else in the news-making food chain involved with communicating study findings to the public?
As we know, provocative results from small, preliminary studies are very often overturned or significantly revised by subsequent, more rigorous research. And yet, Postuma’s patients were ready and eager to adopt changes based on such early, preliminary research, despite all the warnings and caveats that were appropriately conveyed by journalists and experts.
It’s another example that should make journalists reflect about how they frame the results of such studies, and whether they should be more selective about which studies get promoted to the public in the first place.