In December 2016, I was hospitalized with severe electrolyte abnormalities that were causing fatigue, muscle cramps and chest discomfort. I received care at my local hospital, which was nationally ranked both overall and in the treatment of endocrine conditions, and I recovered fully.
A month later, my heart sank as I received a letter from Aetna informing me that the hospitalization, amounting to nearly $30,000 in treatment, had been deemed not medically necessary. Coverage was denied.
The case had seemed crystal clear. My calcium level was below the critical value of 6.0. My magnesium and potassium levels were likewise below normal. I was experiencing chest discomfort and pain and was at risk of cardiac arrhythmia. What’s more, I was struggling to keep oral medications down, making it even more difficult to recalibrate my electrolyte levels at home. My admission was a slam dunk, endorsed by both the emergency medicine and endocrine physicians.
But in the insurer’s eyes, the treatment was not necessary. I was livid.
I was a new political science professor, and busy juggling new courses. In between classes, I called Aetna to try to resolve the matter, but the long wait times were exasperating. Instead, I tweeted my frustrations about the denial and tagged the company. I did not know if they would respond, but I wanted whoever monitored the account to be made aware. Perhaps equally importantly, I wanted to get this exasperation off my chest.
To my surprise, Aetna replied, inviting me to connect with them. When I did so, they provided a social media-specific email I could contact.
I explained my medical issue very plainly over email, saying that I had needed multiple days of intravenous calcium replenishment and fluids and cardiac monitoring before I could be safely discharged.
Soon, an Aetna staffer informed me by phone that they could not see why the claim was denied and that it may have been an error. The denial was reversed before I ever saw a hospital bill.
Social media outreach is not the conventional avenue through which to challenge health insurance-related delays and denials, but it can be effective. ProPublica published a 2014 piece on the value of complaining on Twitter about health insurance barriers, and a 2023 NBC investigation highlighted both patients’ and physicians’ reliance on public shaming as a mechanism to overturn denials of prior authorization, or requirements of insurer pre-approval for certain types of healthcare.
Why had this worked for me? Because I could cite lab values and relevant risks, thanks to my academic training and a lifetime of navigating the US healthcare system as someone with chronic medical conditions? Was it easier for them to pay the claim than to risk bad PR resulting from an angry enrollee’s persistence? I probably had in the ballpark of 5,000 Twitter followers at the time – not enormous, but above average. Either way, why did it have to come to this? My experience of going through the regular appeal process had been so exhausting.
There was no way I would have been able to pay this medical bill. But I couldn’t help wondering how I would have reacted if a $150 medication had been denied. Would I have paid up to avoid the administrative hassles? Possibly.
This wasn’t the last time this “calling out” tactic would prove to be fruitful. In 2019, I was trying to forge my new career in public health research, identifying a substantial research project with which I could go back into the academic job market. At the same time, in a new city, tests and prescriptions were getting denied or delayed amid protracted prior authorizations or requirements of insurer pre-approval. Instead of focusing on research, I was navigating health insurance bureaucracy. I caught myself tearing up, overwhelmed. I was supposed to be working, not getting redirected by endless insurance staff on the phone.
I complained on Twitter once more. It had worked before, so I hoped it would help again. Sure enough, I received a response (this time, from my new insurer, Health Net) and an offer to assist in resolving the dispute. The coverage was approved.
Nearly one in five medical claims processed by Affordable Care Act marketplace plans is denied in a given year. That amounted to 73m claims in 2023 alone – and that’s just a small share of the health insurance market. Because of the fragmented nature of American health insurance, it is difficult to know exactly how many claims are denied each year, but some estimates put the share between 10% and 20%.
I had every advantage in the world. I am a white native English speaker. I have a PhD and was working in a premier school of public health. I am very familiar with the US healthcare system, and I have the job flexibility to stay on hold for long stretches during standard business hours. What would a working mother or someone working multiple jobs do? What about someone who isn’t fluent in English or is otherwise unfamiliar with the healthcare system?
This onerous and unpredictable process highlighted how administrative headaches can drive health inequities, keeping coverage out of reach for some. The University of Michigan professors Pamela Herd and Donald Moynihan call the learning, compliance and psychological costs associated with navigating public programs “administrative burden” – a concept that seems relevant here too.
Understanding these procedural barriers felt imperative, especially given the pronounced racial and socioeconomic disparities in access to healthcare and health insurance. For instance, Black and Hispanic patients more likely than white patients to be uninsured and to delay care due to cost.
I wanted to learn more about the impact of coverage denials and delays in care caused by the prior authorization process. In 2022 while on the faculty of Oberlin College, I surveyed 1,340 adults across the US about their experiences with denied coverage, appealing denials, and resulting delays in healthcare. Thirty-six per cent of survey respondents reported experiencing at least one denial – often multiple denials. Additionally, I conducted 111 interviews with patients, physicians, health insurance lawyers, and people within or formerly within the health insurance industry. More than 70 of the interviewees were patients, whose names were anonymized to protect their privacy.
For many interviewees, Twitter was a vital tool for expediting insurer review of delay or denial of coverage. Some had only taken to Twitter to vent and were surprised by the insurer’s response.
When Jeff, a physician in his 30s, went into sudden cardiac arrest, he was taken to the nearest hospital, where he was intubated and admitted to the intensive care unit. He later made a complete recovery. Despite Oregon’s prohibition against surprise billing, Jeff learned a few weeks later that his anesthesia and radiology care had been treated as out of network, leaving him with a bill of $12,000 despite his having met his out-of-pocket maximum.
Fortunately, Jeff knew the tricks of the healthcare system, including not to take Cigna’s initial denial as the final answer. Jeff spent lunch breaks on the phone with Cigna, pointing out that the bill appeared to violate state law. He also reached out to his hospital’s human resources department in the hope that they might be able to assist in resolving the dispute. Unable to resolve things favorably, he tried public shaming on Twitter.
Initially, he said, “it was more to vent, to show this is the sort of thing the company does, to raise awareness of surprise billing, and to drag the company a bit.” But he received a direct message from Cigna with the name and phone number of someone he could contact directly to resolve the dispute.
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Then, upon checking the balance on his bill, Jeff saw it had been reduced to $0. He would later learn that Cigna had pressured the hospital to forgive the charges, resulting in uncompensated care, and he felt uneasy about the outcome, despite no longer being on the hook for the charges.
Gary, a 51-year-old man in New York, received frequent denials for tests to monitor the growth of a benign tumor on his prostate. His life was disrupted by unmanaged symptoms, as he would sometimes postpone or forego care to avoid additional insurance disputes. But when he could no longer avoid obtaining care, he relayed his story to his thousands of Twitter followers, with results. Public shaming got him the care he needed.
He acknowledged how lucky he was to be able to go down this path, though he couldn’t help wondering why it was necessary at all.
Health insurance appeals are complicated. Typically, a formal appeal begins with a “peer-to-peer” call between the prescribing physician and a physician employed by the insurer, followed by the submission of additional documentation of medical necessity, then the wait for a response. This may take 30 days in the case of a prior authorization, or 60 days in the case of medical services already received.
However, for an appeal to be successful, the patient needs to know they can appeal a coverage decision in the first place. In my survey, the leading explanation among respondents who didn’t appeal coverage denials (28%) was that they did not know they could appeal. The Affordable Care Act requires that health insurers provide information about the right to appeal.
If a patient knows there is an appeal process, they still need to know how to do it. Health insurance materials can be difficult to understand. Most healthcare materials are written at a 10th grade level or higher, despite the average American adult reading at around the 7th or 8th grade level and often having low health literacy. What’s more, patients need to have time to do it, and must be able to coordinate with their physician’s office – potentially on a tight timeline – to ensure there is documentation of medical necessity. My research showed that patients do not know patients win about half of the time, so they often undervalue appealing their own denials.
These factors can make it difficult for patients to understand why care is being denied, and to know their rights.
Even when things go right, an appeal can take weeks to resolve. That can mean weeks of being on a suboptimal treatment or facing mounting medical bills and associated stress. Given this confusion and anxiety, it is perhaps only natural that patients sometimes see social media outreach as a way to mitigate these delays.
In December, the Cigna vice-president turned whistleblower Wendell Potter wrote an opinion piece for the New York Times. In his role at Cigna, he wrote, one story the company “couldn’t keep out of the press”, and that contributed to his resignation, was the denial of 17-year-old Nataline Sarkisyan’s “experimental” liver transplant. “Nataline’s family stirred up so much media attention,” he wrote, “that Cigna relented.” (Nevertheless, it was too late to save her life.)
Writing for the Conversation, Jennifer Forestal, an assistant professor of political science at Loyola University Chicago, characterizes online shaming as a “valuable tool for democratic accountability”. She notes that it can be especially powerful when there is a pronounced power imbalance, such as challenging corporate behavior. It is a platform where the powerless can voice disapproval, even injustice, and it can promote companies’ enforcement of laws and prosocial behaviors.
Still, social media shaming is not a magic solution that everyone can automatically access. Even in this age of digital saturation, as of early 2024, about 70% of the US population uses social media. As of January 2024, Edison Research found that about one in five Americans use X (a marked decline from previous years), and that share is lower in the aftermath of the 2024 election. Twitter users also tend to be more highly educated and affluent than US adults overall – two characteristics associated with higher health literacy.
The social media landscape is becoming more fragmented, with few health insurers establishing accounts – let alone posting with any regularity – on Threads and BlueSky, for example. The proliferation of platforms and diffusion of users across them undercuts meaningful opportunities for patients to engage with insurers and resolve disputes that arise.
I no longer use X. The only platform I use regularly is BlueSky, which launched in February 2023 and now has more than 31 million users, still a fraction of Twitter’s now-diminished user base. I feel fortunate not to have encountered many coverage barriers with my current insurer. But if another denial arises, I may have fewer accountability tools at my disposal than I did in 2017 and 2019. I know I can navigate formal appeal processes, but I am sadly in the minority.
Information barriers pervade the healthcare system. Most people underestimate the value of appealing insurers’ decisions, if they even know they are able to try. But knowledge is power: I also found that 41% of my survey respondents were more likely to appeal after finding out it was possible. The changing social media landscape means that there may be fewer opportunities to publicize erroneous denials. That means it’s more important than ever for patients to be able to access information about appeal processes, and for healthcare companies to invest in consumer assistance efforts that can reduce administrative burdens for patients.
