In some cases, influential industry leaders like Mark Cuban get involved to help patients get a denial overturned
Mark Cuban, who founded a discount online pharmacy, often reshares social-media posts from people trying to get their medical care covered.
It took Payton Herres going viral - twice - to get her health insurer to cover a lifesaving medication.
The 26-year-old, who underwent a heart transplant in 2012, began taking an off-label prescription for everolimus, a generic version of Novartis's anti-rejection drug Zortress, a year later.
Elevance Health (ELV) informed Herres last year that it would no longer cover the drug, prompting her to share her story on Facebook. "I didn't know what else to do," she said. A day later, the insurer restored coverage of the drug, but at the much higher price of $1,000 for a 90-day supply. She used to pay $180.
"I call that ghost approval. Technically, you approved it," Herres said. "But I still can't realistically get the med because you [made] it financially impossible to get."
Her story gained traction a second time after a U.K. newspaper detailed how the woman whose son's heart Herres had received had offered to pay for the drug so Herres could keep taking it. Someone shared that story on social media, tagging Warris Bokhari, CEO and co-founder of Claimable, an artificial-intelligence startup that drafts health-insurance appeals on behalf of patients, and Mark Cuban, the former "Shark Tank" judge who co-founded Mark Cuban Cost Plus Drug Company, a discount online pharmacy that operates as a public-benefit corporation. They both got involved.
"This is beyond incredible," Cuban wrote on LinkedIn.
Cuban's pharmacy now supplies Herres's medication for about $300 for 90 days, and a nonprofit associated with Claimable is covering the cost, according to Herres. In response to a question about the denials, an Elevance Health spokesperson said that the denials "did not fully account for Ms. Herres' treatment history with everolimus" and that the drug is considered a specialty medication, which is why it has a higher co-pay.
Cuban's online advocacy didn't change Elevance Health's coverage, but by calling attention to denials like the one that Herres experienced, he is pushing for broader change. Already an influential voice on healthcare issues in the U.S., Cuban regularly engages online with people struggling to get care, pay for a medication or overturn a denial. His rationale is simple: He wants employers that provide health insurance to employees and their families to know that care is being denied.
More than half of Americans get their health insurance through an employer, and Cuban questions whether the CEOs of these companies know what their employees are going through on a day-to-day basis.
"Their ignorance that this even happens raises questions about the ethics of the insurance companies they hire to manage their benefits," Cuban told MarketWatch in an email. "How could they not tell the CEO that for 18K a month they could save the leg of a child? Or for a few hundred dollars, they could pay for generic heart-rejection medication?"
Healthcare costs keep going up
Turning to social media to complain about a corporate wrong isn't new, especially in healthcare. Patients have used the platforms for decades to detail their battles with insurers and drug companies or promote medical fundraisers on sites like GoFundMe. But the fight over denials has grown louder in recent years, as Americans and their clinicians have become increasingly frustrated with the U.S. health-insurance system due to soaring costs and rising rates of denials.
The cost of premiums went up across the board this year. Some Affordable Care Act plans raised premiums by 22% after lawmakers didn't renew tax subsidies that helped keep these costs in check, while Medicare premiums jumped 10%. People with employer-sponsored health insurance were expected to see their premiums increase by about 7% this year in addition to higher deductibles and copays, according to a survey conducted last year by the consulting firm Mercer. That's the largest increase since 2010.
That includes the self-insured employers that Cuban is aiming to influence. At least one-third of Americans get health insurance through their own or a family member's self-insured employer, meaning one that assumes the financial risk for their employees' healthcare costs, researchers recently wrote in the New England Journal of Medicine.
Many large employers like Alphabet $(GOOGL)$ $(GOOG)$, FedEx $(FDX)$ and Lowe's $(LOW)$ are self-insured and contract with organizations called ASOs or third-party administrators, some of which are run by major health insurers, to manage health benefits. Some of these organizations have been criticized for focusing on their own margins rather than on how the benefits they design affect employees.
In the middle are American workers trying to figure out how to use the benefits they pay for each month without getting stuck with a bill they can't afford, or an unexpected denial. That may be one reason people are airing their frustrations on social media, according to Sara Collins, a senior scholar at the Commonwealth Fund, a private foundation focused on healthcare policy.
"What we're continuing to see speaks to people's general frustration with their ability to use their insurance, and the complexity of it," she said.
In 2023, about 20% of Americans surveyed told the Commonwealth Fund that they or a family member had dealt with a prior-authorization denial or a claim denial in the previous year. A similar share said the same in a 2026 survey of 4,500 people, although Collins noted that this year's respondents were more worried than previous ones about how their credit scores would be affected if they couldn't pay a medical bill.
Most Americans don't know they can appeal a health insurer's decision, and research shows that only half of patients take that action. For many people, dealing with an insurance company can feel like navigating a black box of restrictions and jargon. But experts say there are certain things that all Americans should know, like that insurers are required to allow people to appeal a denial twice or request a "peer-to-peer review," which is when a patient's doctor calls a doctor at the insurance company to justify a specific medication or type of care. Some hospitals will also negotiate a bill, while others won't.
Fighting a denial
Dealing with a denial is rarely easy, even for people who work in the healthcare industry and have a better understanding of how the system works.
When Sara Noonan hit a wall getting UnitedHealthcare $(UNH)$ to cover Roche's (CH:ROP) Pulmozyme for her undiagnosed illness, she also turned to social media.
The 39-year-old from Quincy, Mass., has been taking Pulmozyme off-label since October 2024 to help manage what she describes as "probably a very rare type of immunodeficiency." She struggles with repeat infections of all kinds - ear infections, conjunctivitis, pneumonia - and the drug, which is approved to treat cystic fibrosis, has helped keep her healthy.
Noonan, who manages her own illness and similar symptoms in her son, left her job earlier this year and went on her husband's insurance, which he gets through his employer. "It was like the moment I pushed that button to submit for prior authorization, they didn't even wait for my physician's paperwork," Noonan said. "They denied me before they even received it."
Her pulmonologist and his team wrote several letters, some of which included charts to show how a combination of Pulmozyme and other therapies had helped prevent lung and sinus infections for Noonan. But UnitedHealthcare continued to deny coverage of the drug, which would cost about $50,000 a year if Noonan were to pay in cash.
After two denials, she put her story on LinkedIn. UnitedHealthcare overrode the prior authorization about 48 hours later, according to Noonan. A spokesperson for UnitedHealthcare declined to respond to a request for comment about Noonan's case.
Noonan says she's grateful, particularly to the people she believes reached out to UnitedHealthcare on her behalf, but she questions whether most Americans would see the same result. After working in pharmaceutical communications for 20 years, Noonan has industry executives in her online network.
At the same time, Noonan is still a patient, one who was sick with pneumonia in the three weeks that Pulmozyme wasn't available to her while she was calling and messaging her insurer and doctor.
"They're asking you to jump higher and higher and higher," she said. "But what they're doing is also potentially making you sicker and sicker and sicker."
-Jaimy Lee
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