KFF Health News Publishes Shameful, Self-Serving Story Advocating Unrealistic “Social Media” Approach to Bogus Insurer Denials Instead of Pushing for External Appeal

It is infuriating to see a publication that presents itself as being a defender of ordinary consumers sell bogus advice and refuse ever to consider, let alone promote, sound policy options. The object lesson today is a recent article, Doctors and Patients Try to Shame Insurers Online to Reverse Prior Authorization Denials. It would be one thing if KFF were to highlight this tendency to call for reforms. But no, the story advocates this approach as a strategy…using KFF itself picking up one of these cases and getting a $36.000 payout.

But since this KFF story was picked up by NBC, we are sure to see energy diverted into social media campaigns rather than reform…which the article indicates in a well buried paragraph was already happening. On top of that, the claim that a social media strategy works is based on source the story mislabels as the National Consumer Rage Survey, which is actually the National Customer Rage Survey. It’s done annually with about 1000 households. There is no indication of what proportion of these complaints (74% of respondents stated they had a problem with a product or service) related to health insurance claim denials, so we have no ideas how large that share was and if it could be considered representative

Moreover, the article also misrepresented the significance of social media efforts. This is what the article said:

This is the 2022 study finding, according to KFF Health News:

Customers are increasingly using social media to air their complaints across all industries, and companies are paying attention. Nearly two-thirds of complainants reported receiving some sort of response to their online post, according to the 2023 “National Consumer Rage Survey,” conducted by Customer Care Measurement & Consulting in collaboration with Arizona State University.

This is the actual finding from the study, as reported by Hubspot:

50% of customer complaints were made using digital channels including email, chat, and social media…..

63% of businesses are doing a better job of monitoring and responding to social media complaints. However, many of the consumers who complain via social media say they’re only “somewhat satisfied” with the resolution.

Even though it seems logical that consumers might be using social media more, that is not what the study found. It reported a shift away from complaining by phone to complaining by e-mail, chat and social media, with social media listed last, presumably to signal it is the least important. And given the way most companies have cut call center hours and staffing and have been aggressively trying to shift consumers to using less labor-intensive channels, it is hard to see the shift as mainly a result of customer preference, as opposed to companies making it more painful to complain via phone by inserting phone trees and long hold times between customers and human agents.

Let us step back and depict this particular insurer scam, which is the abuse of prior authorization. This requirement applies not just to scheduled surgeries but other treatments. From the article:

Prior authorization is a common cost-cutting tool used by health insurers that requires patients and doctors to secure approval before moving forward with many tests, procedures, and prescription medications. Insurers say the process helps them control costs by preventing medically unnecessary care. But patients say the often time-consuming and frustrating rules create hurdles that delay or deny access to the treatments they need. In some cases, delays and denials equal death, doctors say….

The 2010 Patient Protection and Affordable Care Act prohibits health insurance plans from denying or canceling coverage to patients due to their preexisting conditions…

But some patient advocates and health policy experts question whether insurers are using prior authorization as “a possible loophole” to this prohibition, as a way of denying care to patients with the highest health care costs, explained Kaye Pestaina, a KFF vice president and the co-director of its Program on Patient and Consumer Protections.

The story then recites denial horrorshows, one of a denial of a $13,000 a month intravenous immunoglobulin treatment for an autoimmune disorder after all else had failed, another for $450 worth of daily meds to shrink a pediatric brain tumor, and a third of an ugly skin rash due to the failed to approve a biologic for Chron’s disease.

KFF Health News points to the IV treatment as an apparent social media success, because KFF Health News contacted the insurer, Blue Cross of Illinois, and the patient soon found that $36,000 of outstanding treatments had been redesignated as paid with no notice or explanation from the insurer. KFF Health News does not indicate how that patient, Sally Nix, got to KFF Health News. Even though the article says Nix vented on Facebook and Instagram, for all we know, she came to KFF Health News’ attention via a more old-fashioned means, like writing editors at KFF Health News who were on the insurer denial beat, or getting people in her personal network to do.so. In the other showcased story, mother appear to have navigated the approval system to get 90 days of medications approved; she then posted online out of the hope that that would prevent the insurer from denying the next 90 day approval. The mother seems convinced social media made a big difference but there is no evidence of that; in fact, her daughter could have been caught up in sadly routine requirements for additional documentation.

The one case that is looks the strongest as a social media win is the doctor who tweeted a nasty photo of the skin rash. His case was reportedly escalated to a review the next day and approved.

In fact, the article concedes that social media may make no difference:

But many patients and doctors believe venting online is an effective strategy, though it remains unclear how often this tactic works in reversing prior authorization denials.

The problem with these misleadingly-told tales is any successes are almost certainly follow a power curve, particularly since the ability to get attention on social media depends on one’s social capital to begin with. Would a parent tweeting the ugly skin rash photo have been taken as seriously as an upset parent?

And how many cases will be amplified by the likes of a KFF Health News? This seems way too much like a lottery (see at 0:50):

And that is before getting to the fact that big corps can and do suppress bad press. Companies called reputation defenders are skilled at planting stories, tweets, and posts so as to drown out negative coverage. I’ve seen this happen with our extensive work on private equity fees and CalPERS. If consumer complaints become enough of a nuisance, the insurers may devote more energy to diluting their visibility rather than solving the problem.

The article further concedes insurers are starting to clean their acts up, albeit slowly:

But there’s reason to hope things may get marginally better. Some major insurers are voluntarily revamping their prior authorization rules to ease preapproval mandates for doctors and patients. And many states are passing laws to rein in the use of prior authorization.

But nowhere does this account mention that there’s already an effective way to crack down on insurer denials, and it’s well road tested too. New York has had an external appeal process for decades. I’ve used it and it works. I’ve gotten denials reversed on routine care, and the mere warning to reps that I will avail myself of the appeals process if I have to seems to help as well. There is also an expedited process for pending procedures, where the state delivers a response in 72 hours.

Some details from the New York Department of Financial Services website:

If your insurer or HMO denies health care services as not medically necessary, experimental/investigational or out-of-network, you have the right to appeal to the Department of Financial Services (DFS). This appeal is known as an External Appeal. Health care providers also have the right to an external appeal when health care services are denied (concurrently or retrospectively)….

Health plans may charge a $25.00 fee to patients or their designees, not to exceed $75.00 in a single plan year. The fee is waived for patients who are covered under Medicaid, Child Health Plus, Family Health Plus, or if the fee will pose a hardship. Health plans may charge providers a $50.00 fee …

For an external appeal to be expedited, the denial must concern an admission, availability of care, continued stay, or health care service for which the patient received emergency services and remains hospitalized; or the patient’s physician must attest that the patient has not received the treatment and a 30-day timeframe would seriously jeopardize the patient’s life, health, or ability to regain maximum function, or a delay will pose an imminent or serious threat to the patient’s health. Or the patient is suffering from a health condition that may seriously jeopardize his or her life, health, or ability to regain maximum function, or is undergoing a current course of treatment using a non-formulary drug. A patient may request an expedited internal and external appeal at the same time. A decision on an expedited external appeal will be made within 72 hours (or 24 hours for a non-formulary drug), even if all of the patient’s medical information has not yet been submitted.

When I asked for a review, my case was read by an MD, and I believe this is still the standard. MDs are not very keen about insurers second-guessing doctors on medical care.

There needs to be far more activist and press demands for external appeal, as opposed to at best tiny bandaids of individual consumers trying to make enough noise to be heard.

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  1. Jack

    It’s the nursing staff that have to do the time on hold. They could give a better sense of how this is going. The last time I had to do this job, the longest hold was 45 minutes. The holder has to be ready to respond instantly when the insurer comes on the line, the insurer will break the connection in 3 seconds otherwise. One of the clinics had hired a designated holder, who sat at the desk, and would answer the pickup, and sing out to the nurse, who would have to leave her work to respond.

    1. Yves Smith Post author

      That is not my experience with Cigna. Where they get you is on a verification process and more than needed introductory patter and then trying to steer you into a phone tree of more options, which is super annoying but does not take all that long. Time to get a rep actually pretty fast once you learn just to keep insisting on “representative” But then stoopidly rep has to validate you all over.

      However, getting things resolved is another matter. Even when you can show they approved a claim in full similar to the one they denied or only partly paid, and the rep agrees the claim was processed in error and puts it in to be reprocessed, the success rate is usually only 50% on a first call. And weirdly, if they give you a case ID#, that means it will not be reprocessed. I have never had a case ID number be connected with a resolution….indeed, subsequent reps can’t find it in the records. So this looks to be a strategy to blow consumers off, to lead them to think it is highly likely the problem will be fixed, when it’s the reverse.

  2. antidlc

    I am way too familiar with the appeal process in my state.

    The problem is if you don’t qualify for an expedited appeal and you have to file a standard appeal. Our insurance company says they will send a written decision within 30 calendar days after your request for a standard appeal is received.

    Then if the appeal is denied, “If you qualify for an External Review, an IRO will review your case and mail you its decision WITHIN 45 CALENDAR DAYS for a standard review.” (caps mine)

    1. antidlc

      The 30 calendar day clock starts after your request for a standard appeal is received.

      They provide a mailing address. You mail your appeal to that address and check the tracking. The appeal doesn’t go to the address they provide. It ends up getting forwarded to another address, adding a built-in delay.

    2. Yves Smith Post author

      As I indicated, pretty much no one is like New York but everyone should be. The reason for mentioning the New York State external appeal is to get voters to demand it in their state. The appeal process is run by the state. In cases that do not involve a medical determination, like Cigna refusing multiple times to pay for Covid tests as required by law, state employees would order Cigna to make payment. Even when the outside MD makes the determination, it is the state that formally decides.

      It also sounds as if “external appeal” is a fake label, that your insurer send the appeals at best to outside friendlies who are pretty likely to side with the insurer.

  3. antidlc

    I would also like to mention that Wendell Potter wrote about an incident where public pressure actually forced the insurance company to allow treatment.


    Shortly after doctors put Nataline’s name on the transplant list, a perfectly-suited liver became available, but then her survival was no longer dependent on her doctors, the hospital or even the new liver that awaited her. It depended upon her health insurer, CIGNA, which denied Nataline’s doctors’ request to perform the transplant.

    At the this difficult time, when Nataline’s parents should have been spending their time by their daughter’s side comforting and encouraging her, they were forced to leap into action to pressure CIGNA save their daughter’s life. They organized rallies, made phone calls, recruited allies and flew to CIGNA’s corporate headquarters to try to get funding for their daughter’s transplant. By the time two weeks had passed, the public pressure became too much for CIGNA and the company approved the transplant. But it was too late. Two hours later, Nataline died.

    The sad story of Nataline Sarkisian is pivotal in Wendell Potter’s new book, Deadly Spin, because it was the event that transformed Potter from corporate flak to a human being with a heart. Potter worked as Cigna’s highly-paid vice president of public relations, and after living through the Sarkisian PR nightmare, he decided that he no longer had the intestinal fortitude to remain an advocate for America’s uniquely cruel system of doling out health care funding.

    It says CIGNA denied the transplant request. The article doesn’t state whether they asked for an expedited appeal, followed by an external appeal.

    But in this case the family got Cigna’s attention and forced Cigna to do something.

    1. Yves Smith Post author

      I appreciate you including this example, but it has the effect of proving the point. Individual successes do not scale. This is no different than recommending GoFundMe as an answer to medical debt.

      1. antidlc

        And what were they supposed to do, Yves? Cigna denied their request.

        What are people supposed to do when, in your words, “It also sounds as if “external appeal” is a fake label, that your insurer send the appeals at best to outside friendlies who are pretty likely to side with the insurer”?

        People run out of options after they work through the system and the system fails them.

        Their only option is, for lack of a better term, public shaming — social media videos, picketing outside the local insurance offices, etc.

        1. Yves Smith Post author

          You are shooting the messenger here. The reality is shaming very rarely works. Odds of success are low. This is why trying to approach this individually is less effective than demanding reforms at a state level and getting media with clout like KFF to advocate for that rather than feel good stories that will simply not come to pass for most people.

          Refuse to pay. Statute of limitations on medical debt is six years in most states. Shift as much of your $ as possible into retirement vehicles (which can’t be seized if you have to BK.) and try to hoard cash (slowly!) well before a BK date if you have to go that route. Anything shorter than a year out they will try to find and claw back. Do everything you can to run the clock out with appeals. Do NOT deal with the same provider entity again, that might restart the debt clock.

          Check with experts, but that directionally is they way you have to go.

          And this may seem like cold comfort, but not all of these treatments are winners. That immunoglobulin treatment in the article? My father got that for his autoimmune disease. First two IV treatments seemed to help a lot. The third set him off into a terminal spiral. Got ulcers in his mouth so he could not eat. Ulcers on his feet so he could not walk. MD then gave him prednisone which makes most people feel awful. He could not sleep and lost 25% of his bodyweight (studies have found that losing that much weight will also make you crazy, one guy who lost that much weight in a rapid weight loss study chopped off tow of his fingers and they halted the study).

          My father could not take it any more and shot himself.

          1. antidlc

            “This is why trying to approach this individually is less effective than demanding reforms at a state level and getting media with clout like KFF to advocate for that rather than feel good stories that will simply not come to pass for most people.”

            KFF can do all of the advocating it wants. Reforms can and should be demanded at a state level, but all of that will take time.

            In the meantime, I will not pooh-pooh people taking to social media or try whatever they can (as long as it’s legal) to fight this corrupt system.

            As I mentioned above, the standard appeal process in our state can take up to two and a half months. And after that period, we can still be refused treatment. We can’t wait until the system is reformed.

            We can’t “refuse to pay” for treatment we can’t receive.

            1. antidlc

              My apologies if the reply came off as snarky.

              As I mentioned before, I could write a whole post on our experience.

          2. aletheia33

            yves, i really appreciate this post from you, and all the info you’ve provided here, including the info about medical BK (which i have saved for future reference) and yes what your father went through and how he chose to end it. there is so much that is still taboo to talk about around elder health care, how people are made to end their lives, and all such information helps. and i am sorry he (and you) suffered so much.

            i intend to look into my state’s scenario for appeals and how the legislature (including my reps) could improve it, as well as the prior authorization scamming, which has become an outrage that everyone involved hates. the latter also because it diverts so much time and effort in medical admin that could be so much better spent, in a time of severe HCW shortage, actually treating and helping patients.

            so thank you for all the healthcare reporting on NC, from the COVID meshugaas to the “insurance” looting to everything else that’s in play in the current collapse of healthcare in USA. thank you for providing essential guidance that your readers can readily make use of at the levels of both personal health and public action.

  4. Sue inSoCal

    Yves, having a chronic illness, and having been an insurance defense attorney, I’m familiar with most of this and unfortunately, I don’t see it going away. I’m so sorry about your father. I had the same treatment; I thought it was a miracle, until it had unbearable side effects, some that didn’t resolve. Thank you for this and your candor.

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