Schwitzer health news blog

Media manipulated by "Morgellons Disease" advocates

You would think it was the war in Iraq, or the Israeli-Lebanese conflict. The amount of news coverage being given, sometimes seemingly unquestioningly, to a questionable condition some call “Morgellons Disease” is staggering.

Just in June and July, the “Morgellons Research Foundation” boasts on its website of appearances on ABC, NBC, CNN, and on local stations in Tulsa, South Bend, San Diego, San Antonio, New York and Salt Lake City. The ABC Good Morning America show and NBC Today each featured stories on Morgellons last Friday at almost the exact same time.

Also just in the last two months, print coverage of Morgellons has appeared in Time magazine, Popular Mechanics, the Washington Times, Chicago Tribune, Pittsburgh Post-Gazette, Minneapolis Star Tribune, Dallas Observer, and the San Francisco Chronicle.

The “Morgellons Research Foundation” lists these signs of the “disease”:

1. Skin lesions with intense itching.
2. Crawling sensations, both within and on the skin surface.
3. Significant fatigue.
4. Cognitive difficulties described by patients as "brain fog".
5. Behavioral effects are common in many patients. Many have been or will be diagnosed as Attention
Deficit Disorder, Attention Deficit Hyperactivity Disorder, Bipolar Disorder, or Obsessive-Compulsive
Disorder.
6.“Fibers” are reported in and on skin lesions. They are generally described by patients as white, but
clinicians also report seeing blue, green, red, and black fibers, that fluoresce when viewed under
ultraviolet light.

Yet what suddenly made this such a hot story?

Many stories quote or cite just one researcher from the Oklahoma State University Center for Health Sciences & College of Osteopathic Medicine.

But stories don’t seem to discuss who named this a disease.
Journalists don’t seem to push for much evidence.
And the journalists seem to have short memories, forgetting past, very similar stories.
They also don’t seem to mind that they are being manipulated: breast cancer, prostate cancer or heart disease aren’t even getting this kind of attention. And what do they really know about the people making the claims?

But someone is pushing all the right media manipulation buttons – something that is increasingly easier to do these days.

One skeptical website, though, may be publishing more than the advocates. See Morgellons Watch, a site dedicated to examining the claims made regarding this phenomenon. The site’s host writes: “I believe that much of the current media coverage of Morgellons is inaccurate and sensationalist. This is misleading sick people into thinking they may have a terrible disease, when the evidence does not indicate that such a disease actually exists. People have very real physical symptoms, but those symptoms have many possible causes, which have very real treatments. Misdirecting people into a wild goose chase, after a disease that probably does not exist, is wrong.”

Pharma windfall from drugs for poor people

Last week in the New York Times, Milt Freudenheim had a column headlined, "A Windfall From Shifts to Medicare."

"The windfall," he wrote, "which by some estimates could be $2 billion or more this year, is a result of the transfer of millions of low-income people into the new Medicare Part D drug program that went into effect in January. Under that program, as it turns out, the prices paid by insurers, and eventually the taxpayer, for the medications given to those transferred are likely to be higher than what was paid under the federal-state Medicaid programs for the poor."

Freudenheim also reminds readers that "in creating the federal Part D program, Congress — in what critics saw as a sop to the drug industry — barred the government from having a negotiating role. Instead, prices are worked out between drug makers and the dozens of large and small Part D drug plans run by commercial insurers. Since Part D went into effect, the pharmaceutical industry has raised the wholesale prices of its brand-name drugs an average of 3.6 percent. Although the actual amount spent depends on what each insurer negotiates, in many cases the drugs for those 6.5 million people who used to receive their medicines through Medicaid will cost more now."

What a great piece of legislation.

Another new conflict-of-interest issue in a medical journal

There may soon be a new daily column or website dedicated to the medical journal/research conflict-of-interest du jour.

The Boston Globe this week has a must-read article on a new angle.

A bunch of physicians who proposed routine screening of virtually every middle-aged person for heart disease using expensive scanning technology say they were frustrated waiting for support from the American Heart Association or the American Journal of Cardiology. The Globe says, "Usually, such a seismic shift in medical practice -- it would affect 50 million US adults and easily cost $25 billion or more -- emerges from a government agency or a major professional organization."

But this handful of physicians proposed a supplement in the American Journal of Cardiology. The journal made them find the funding. The Globe reports: "To raise the money, the physicians sent letters of appeal to a half-dozen major pharmaceutical companies, receiving $55,800 from the maker of the blockbuster cholesterol-lowering drug Lipitor, Pfizer Inc., which might benefit if more people are diagnosed with heart disease.

'The whole thing sounds like a conflicted mess, from the recommendations that they're making to the issue of how these journal supplements work,' said Dr. Jerome P. Kassirer, top editor of The New England Journal of Medicine through most of the 1990s and an outspoken critic of the intrusion of financial interests into the scientific process."

The article goes on to question the evidence to support the aggressive screening recommendations, and the varying policies of medical journals for such "pay to play" supplements, which do not undergo the same review as studies published in the journals.

It's a mess, and the Globe did a terrific job in shining a light on it.

Medical journals, drug ads and reform

The journal PLoS Medicine has re-opened the discussion of medical journal policies for dealing with industry in a new editorial. The journal reminds readers: "In PLoS Medicine's launch issue in 2004, we declared that we would not be part of 'the cycle of dependency that has formed between journals and the pharmaceutical industry'. We set out three policies aimed at breaking this cycle. First, we would not publish adverts for drugs and devices. Second, we would not benefit from exclusive reprint sales to drug companies, since our open access license would let readers make unlimited copies themselves. Third, we would decline to publish studies aimed purely at increasing a drug's market share."

When a recent policy paper in PLoS Medicine called for other medical journals to follow that example and ban ads for drugs and devices, a group of advertising agencies and public relations firms representing the pharmaceutical industry called this a “goofy idea.”

The discussion is healthy, not goofy. With so many recent instances of fraud on the part of scientists submitting papers to journals, and instances of failure to disclose conflicts of interest by authors, there is an erosion of trust at stake.

Read the PLoS Medicine editorial and educate yourself on some of the serious issues at play.

FDA scientists asked to distort data

A survey by the Union of Concerned Scientists shows that:

Large numbers of agency scientists reported interference with their scientific work.

* Almost one in five (18 percent) responded, "I have been asked, for non-scientific reasons, to inappropriately exclude or alter technical information or my conclusions in an FDA scientific document."

* More than three in five (61 percent) knew of cases in which "Department of Health and Human Services or FDA political appointees have inappropriately injected themselves into FDA determinations or actions."

* Three in five (60 percent) also knew of cases "where commercial interests have inappropriately induced or attempted to induce the reversal, withdrawal or modification of FDA determinations or actions." Fifty percent also felt that non-governmental interests (such as advocacy groups) had induced or attempted to induce such changes.

* Only half (51 percent) feel the "FDA is acting effectively to protect public health."

* One-fifth (20 percent) say they "have been asked explicitly by FDA decision makers to provide incomplete, inaccurate or misleading information to the public, regulated industry, media, or elected/senior government officials." In addition, more than a quarter (26 percent) feel that FDA decision makers implicitly expect them to "provide incomplete, inaccurate, or misleading information."

* Two in five (40 percent) said they could not publicly express "concerns about public health without fear of retaliation." More than a third (36 percent) did not feel they could do so even inside the confines of the agency.

Nearly 1,000 out of 6,000 FDA scientists responded to the mail survey.

Are National Academy of Science panels fair & balanced?

A new report from the Center for Science in the Public Interest questions the integrity of panels appointed by the National Academy of Sciences.

A CSPI news release reads, in part: "Congress created the National Academy of Sciences (NAS) to provide independent, science-based advice to policymakers in government. But according to a year-long review of 21 NAS committees conducted by the nonprofit Center for Science in the Public Interest (CSPI), nearly one out of every five scientists appointed to an NAS panel has direct financial ties to companies or industry groups with a direct stake in the outcome of the study. And about half of the panels examined had some scientists with readily identifiable biases who were not offset by scientists with alternative points of view. ...

Legislation that would bar scientists with financial ties to drug makers and medical-device companies from serving on FDA advisory committees, sponsored by Rep. Maurice Hinchey (D-NY), passed the House in May and will be considered by a conference committee in the fall."

Erosion of trust in medical journals

The editor of the Journal of the American Medical Association says that for the third time in three months, the Journal was misled by authors failing to disclose their ties to drug companies. This time it was in a study appearing in this week's Journal linking migraines to heart attacks in women. All six authors of the study have had financial ties to drug companies making products for migraines or heart problems.

The Associated Press reports that "the authors said they did not report their financial ties because they did not believe they were relevant to the study."

JAMA was burned last week when authors of a depression study failed to report their connections to drug companies making antidepressants. And two months ago authors of a study on arthritis drugs and cancer failed to fully disclose.

The engtanglement of conflicts of interest in the dissemination of health, medical and science news is worsened when journalists don't question researchers about potential conflicts of interest, or when they take as gospel anything that is published in a journal. Consumers are hurt when there is not full disclosure. They're not getting the full story. That's why, on our HealthNewsReview website, we give an "unsatisfactory" score to any news story that fails to pursue questions of conflicts of interest in the sources used in a story.

This situation must change.

Medical Arms Race

Jeremy Olson in today's St. Paul Pioneer Press reports on concerns about the "medical arms race" -- "relentless drive to buy the newest technology to stay competitive and offer the industry standard in care."

But, as he reports, that comes with high costs and questions about benefit.

You've seen the marketing for CT scans, da Vinci robotic surgery systems and the Cyberknife.

Read his story. There should be more like this in more news outlets more often.

Hospital execs' conflict of interest questions

With all of the attention given to doctors' dealings with drug companies, let's not forget that hospital execs may have some shenanigans of their own. Yesterday, Walt Bogdanich of the NY Times, in a story headlined "Hospital Chiefs Get Paid for Advice on Selling," told the story of hospital executives benefiting from payments made by companies their hospitals do business with. Similar to the MD-Pharma story, this one has posh resort settings, big payments for little time commitment, etc.

The "institute" created to arrange such meetings once shunned the journalist's inquiries. They denied that any hospital exec member made as much as $50,000 a year from the "advice consultations," then later revealed that indeed payments did reach that high.

Great story, revealing another troubling area of conflict of interest in health care.

Paper doesn't disclose who's paying Flying Nun to fly

"Celebrity sickness" campaigns will always be less than truthful if they fail to disclose who's paying the bills for the campaign. When journalists join in by giving free advertisiing - disguised as news - to drug-company sponsored celebrity campaigns without disclosing the drug company funding, it is a travesty. I have written about how CNN failed to disclose former NFL-er Joe Theismann's drug company support on a tour promoting prostate health.

The latest example I've seen was in The Oregonian last week. The paper ran a story that proclaimed that "Actress Sally Field joins the women who are fighting osteoporosis with medicine, supplements and exercise." Not surprisingly, there was an overt plug for a drug: "Field chose to take Boniva, a once-a-month medication from Roche Therapeutics." And the paper let her get away with this: "I feel it's kind of a miracle."

Nowhere did the paper mention that Roche pays for the former Flying Nun to sprout her wings for its drug Boniva, something that is easily found on the Web.

Readers of The Oregonian deserve better. The "Nun", proclaiming miracles, is just an actress being paid in a new role, following a script.

Consumer-driven Health Care Marketing Disguised As News

The Star Tribune bought a UnitedHealth Group news release hook, line and sinker this week. United announced the findings of a three-year study of "consumer-driven health care plans." It reported "that the cost to employers per member in a high-deductible plan declined 3 to 5 percent, while increasing 8 to 10 percent for others."

The paper provided no details of the group surveyed. How old were they? How well-educated were they? What was their average income? Was this a cherry-picked group of healthy, higher-motivated, higher-educated, better-informed, better-able-to-shop-around employees? These are essential questions. The answers were not provided.

The Star Tribune at least did note some other opinions: one that such plans are not necessarily cheaper than traditional plans for employers, and another that these results may be preliminary. But the story still tilted far too much to the insurance industry party line, that "consumers are more discerning when they are confronted with prices and are less inclined to pay for expensive visits to the emergency room to treat something basic such as a fever or an ankle sprain."

The "put-consumer-skin-in-the-game" philosophy, in the absence of sufficient tools to help consumers play the game, is wrongheaded.

In their own city, the paper could have turned to skeptics such as former U.S. Senator David Durenberger, who recently wrote: "It’s in my best interest – and that of my children and grandchildren – to live in communities of integrated health, medical and long term care systems. It is in such communities that responsibility is shared equally among consumer, professional and insurer, and where greater accountability is demanded of those whose mixed motives might conflict with serving the consumer’s primary interest. Dis-integration is the goal of consumer-driven health care and its principal supporters in the individual insurance industry."

Katie Couric cancer fundraisers violate ethics

For the record, I am trying to be fair with Katie Couric for her cancer crusades. Just ten days ago, I posted on this site that one of her colon cancer awareness campaigns may have taken a more evidence-based turn - a turn for the better.

But now she's on a six-city tour preparing for her CBS anchor debut in September. And wherever she goes (at least from news stories in the Los Angeles Times, Dallas Business Journal, and the Minneapolis Star Tribune), she is involved in cancer fundraisers - so far for the American Cancer Society and for the Ronald McDonald House in Minneapolis.

Such advocacy involvement is an ethical breach. If she's a journalist, she must be impartial. How convincing would her reporting be (or that of a CBS newscast she anchors), if the American Cancer Society is accused of mismanaging millions of dollars in funds in the future? How impartial would her reporting be (or that of a CBS newscast she anchors) if the cancer causes she publicly supports take stands that are contrary to the best medical evidence? (Something she herself has done with her colon cancer awareness campaigns in the past.) And does her crusading on behalf of cancer causes convey to news viewers that cancer is more important than heart disease (America's leading killer), HIV/AIDS, the uninsured, etc? These are some of the ethical reasons why a journalist's involvement in causes is problematic.

But maybe she shouldn't be viewed as a journalist. As the tour suggests, she is packaged as a perky personality celebrity.

But not in the eyes of WCCO Minneapolis anchor Don Shelby, who, in introducing Couric at one event according to the Star Tribune, invoked "news legends Edward R. Murrow and Walter Cronkite -- comparisons that even had Couric shaking her head."

Gag me. I have studied Edward R. Murrow. I teach my students about Edward R. Murrow. And Katie Couric, sir, is no Edward R. Murrow.

Good night and good luck, if this is the future of CBS News.

Is this a market-based solution to health care delivery?

Free valet parking, baby grand piano, macchiatos at the coffee bar, concierge service, flat-screen TVs, 300-thread-count sheets (who counts?), wireless keyboards and in-room Internet service.

These are hospital amenities described in a recent Washington Post story, "Hospitals Treat Patients To Five-Star Amenities: Facilities Seek Market Edge With Plush Extras."

The Post reports: "This trend has its critics, including industry consultants who caution hospitals to remember that their primary mission is to treat patients, not coddle them. Some hospital administrators, too, are leery of overspending on frills." One said, "I would rather put money into nursing care and staffing and making sure our doctors are there. At the end of the day, it's about taking care of patients."

The story also reminds readers: "As some of the Washington area's hospitals expand at record levels and add amenities, others don't have that luxury. They are buckling under the burden of caring for the uninsured, raising concerns about widening disparities in health-care facilities."

Meantime, in the Midwest, former U.S. Senator David Durenberger and the National Institute of Health Policy host a series of dialogues starting tomorrow to better understand "The Medical Arms Race Syndrome" --the interplay between technological innovation, market forces, the role of government, and rising healthcare costs.

Is this progress?

I'm catching up to a story that's now a couple of weeks old, but which is too good to miss.

Under a terrific headline, "Questions Over New Eyesight Drug That May Be as Good as Older, Cheaper One,"
Andrew Pollack of the New York Times reported on the new drug for wet-form macular degeneration, Lucentis. You may not have that condition, but the story still carries a powerful message about new drug development.

Pollack wrote: "...for patients, doctors, Medicare and other insurers, the drug's arrival will pose a conundrum. That is because the medicine, Lucentis, is expected to be 10 to 100 times as expensive as a similar drug that many ophthalmologists say is every bit as good. ... But the big question is whether insurers and patients will consider Lucentis worth prices that may be $10,000 a year or higher, compared with around $1,000 or less for the drug already on the market that many ophthalmologists say is just as good.

But Genentech has no interest in getting Avastin approved for macular degeneration, because that would undermine the sales of Lucentis, which some analysts predict will have annual sales of several hundred million dollars."

One of the researchers who tested Avastin for macular degeneration is quoted: "The whole experience really opens your eyes to how our whole health care system is operating. We could be incentivized to use the most effective therapy at the most reasonable cost. But that's not how our system is set up."

Wow.

Big provider pays big bucks for unnecessary surgery

Jeanne Lenzer reports in this week's BMJ: "The second largest health provider in the United States, Tenet Healthcare, has agreed to pay nearly $500 million to settle claims that doctors did unnecessary surgery at the Redding Hospital, in Redding, California.

In a separate settlement on 29 June, Tenet agreed to sell 11 hospitals and pay $900m to resolve charges that they overcharged Medicare $1.5bn."

Journal editor asks: Can we tame the monster?

And the monster is "an overpowerful, under-regulated drug industry and a research establishment and publishing industry in its thrall," according to BMJ editor Fiona Godlee. She reflects this week on last week's correction by the New England Journal of Medicine of a study it published on rofecoxib (Vioxx).

Excerpts of her editor's note: "The simple message is that increased cardiovascular risks were visible as early as four months into treatment, rather than the 18 months that Merck had claimed. But rofecoxib was withdrawn two years ago, so why all the fuss?

I suggest a more radical solution. ...Drug companies should not be allowed to evaluate their own products. To get their products licensed they would contribute to a central pot for independent, publicly funded clinical trials. Is this feasible? Is it the answer?"

How drug companies squelch negative findings

Scott Hensley of the Wall Street Journal published an interesting piece last week headlined, "Quest for youth: how research on anti-aging pill lost momentum."

In it, he writes; "Four years after Pfizer Inc. ended a clinical test of an experimental anti-aging pill and stopped its development for that use, the results of the study still haven't been published in a scientific journal, where other researchers could take advantage of them.

The research behind medicines that get nixed in the trial stage could be valuable to the scientific community. But that information may not immediately reach people, working in academia or at other companies, who might be able to solve the problems or otherwise build on the results."

But, oh, did Pfizer enjoy the publicity after small exploratory studies "showed promise." And journalists continue to cover non-peer-reviewed presentations on the drug at scientific meetings. See one review of one recent story. Journalists must realize they're not getting the whole story when they report on "revelations" at scientific meetings.

Doctor-run charities and conflict of interest

The New York Times last week had an excellent front-page story on another troubling area of conflict of interest in health care and medical research.

Read the story to learn more about tax-exempt "charities" that, according to the Times, "are typically set up to engage in medical research or education, and the doctors involved defend those efforts as legitimate charitable activities that benefit the public. But because they operate mainly under the radar, the tax-exempt organizations represent what some other doctors, as well as regulators and industry consultants, say is a growing conduit for industry money. The payments, they say, can bias the treatment decisions of physicians, may lead to suspect research findings and at times may even risk running afoul of anti-kickback laws."

Katie Couric colon campaign may be improving

I have helped lead the criticism of Katie Couric's often troublingly non-targeted colon cancer screening campaign. By that I mean that her messages often did not discriminate between people at an age at which a benefit of screening has been proven and people at an age at which the benefit is not so clear and evidence for possibly greater harm exists. She was using her fame and her platform to crusade for screening - sometimes giving troubling advice to all readers and viewers when the message should have been targeted to sub-groups.

Maybe that's getting better. I saw the poster below in Boston Logan airport this weekend. The last line reads: "If you're 50 or older, talk to your doctor and get screened for colorectal cancer." That age category has been missing from many of her previous messages. Maybe it's her partners in this campaign - from the CDC - who injected the evidence-based guideline into this message.

Screening test decisions should be based on evidence, not on emotion. Good things can happen and bad things can happen from what are often framed as "simple tests."