For-profit healthcare companies, many of which are owned by private equity, are aggressively expanding their efforts to trick seniors into abandoning their enrollment in traditional Medicare and joining for-profit Medicare Advantage plans.
About half of all seniors are now enrolled in Medicare Advantage. The pitch for MA plans is seductive. They offer bells and whistles that are not part of Medicare. If you enroll in a MA plan, you will get free gym membership, prescription drug coverage, dental coverage, and a variety of other attractive benefits.
What’s wrong with MA? It’s great when you are not sick. It’s very bad when you have a serious illness.
When you have surgery or other serious illness, Medicare and your secondary pays almost all of your medical costs. MA may or may not. MA has panels to decide whether to pay your bills. You may be denied and stuck with huge bills.
Privatization produces worse service because the corporation must turn a profit. Make no mistake: MA is privatization.
How does MA make a profit? By denying the claims of patients.
I had open heart surgery in 2021. I was hospitalized for a month. I spent a week in the ICU (intensive care unit). When the total hospital bill arrived many weeks later, I almost had a stroke: it was over $839,000! After Medicare negotiated with the hospital, the actual cost to me was $300. That’s a miracle. Why give up that kind of coverage?
A new Medicare privatization scheme developed under President Donald Trump and now being expanded under President Joe Biden is forcing hundreds of thousands of seniors onto new private Medicare plans without their consent.
The development represents a troubling new dimension in the fight by corporate interests to privatize Medicare, the federal health insurance program for people 65 or older. Medicare Advantage, which allows for-profit health insurers to offer privatized benefits through Medicare, already results in unexpected costs for routine procedures and wrongful denials of care. Private plans have cost Medicare an astonishing $143 billion since 2008, and are now drivingsome health insurers’ record profits.
The new Direct Contracting Entity (DCE) program similarly adds a private-sector third party between patients and Medicare services. Medicare allows these intermediary companies to offer unique benefits, like gym membership coverage. But as for-profit operations ranging fromprivate insurers to publicly traded companies to private equity firms, these intermediaries are incentivized to limit the care that patients receive, especially when they are very sick.
While Medicare Advantage patients choose to sign up for private insurance plans, patients are being enrolled in these DCE health care plans without their informed consent. As Rep. Pramila Jayapal (D-Wash.) noted in a January op-ed, “Seniors in traditional Medicare may be ‘auto-aligned’ to a DCE if any primary care physician they’ve visited in the past two years is affiliated with that DCE. That means Medicare automatically searches two years of seniors’ claims history without their full consent to find any visits with a participating DCE provider as the basis for enrollment.”
Alexandra Petri is the resident humorist at The Washington Post. She has the knack of taking wacky ideas in the world of politics and exposing them as bizarre. In this post, she shows the absurdity of sanewashing extremism in the guise of finding a “middle ground” with crackpot ideas. The “middle ground,” she cautions, may actually mean “giving ground” to very bad and deadly ideas. Sometimes there is no middle ground between a good idea and a dangerous idea.
She writes:
“As a Democratic member of Congress, I know my party will be tempted to hold fast against Mr. Trump at every turn: uniting against his bills, blocking his nominees and grinding the machinery of the House and the Senate to a halt. That would be a mistake. Only by working together to find compromise on parts of the president-elect’s agenda can we make progress for Americans who are clearly demanding change in the economy, immigration, crime and other top issues.”
— “Let’s Try Something Different in How We Deal With Trump,” Rep. Tom Suozzi (D-New York), in a New York Times op-ed
Look, some people are still naive enough to believe that polio is, for lack of a better word, “bad.” And recent signs haven’t been encouraging! It seems like the disease wants to do exactly what it did last time: cripple children and put them in iron lungs. But what if instead of fighting it, we … didn’t?
When I look at how people voted this election, I am forced to conclude: Some of you want polio. Who am I to stand against that desire? Someone with values?
Do I think polio is good? No! Of course not. But some people do, and I just think it would be a mistake not to give them the opportunity to set the course of vaccine policy for the next four years. Which, again, isn’t what I want. But compromise is important. That was why people voted for me, someone who said he didn’t like polio, so that I could surprise them by wanting to hear polio out. That’s just good politics.
It’s not only polio. Everywhere you look, there are battles that once felt existentially important in which you can just surrender, as I’m sure Donald Trump is eager to tell Ukraine. And I am ready to start doing that work — first on polio, then on everything else.
Listen, I’m not naive. I know that every indication so far has been that only one side is willing to compromise on anything. That gives us bargaining power! Or is it the other side that gets the bargaining power … ? Hang on, let me go look this up. This feels important to get right! Well, let me keep going with my argument, but I will come back and look this up. Don’t let me forget!
Where was I? Right: Having core values means that sometimes you have to stand up for them, even when it feels like an uphill battle. For instance, the belief that trans people deserve protection from those who would legislate them out of public spaces and eliminate their right to medical self-determination — a bottom line that I would never budge on, except to completely throw away that principle if I ever decide it’s politically expedient. Which I think I might just have done! Whoops!
But, hey, that’s what principles are: inconvenient. Except for my bedrock principle: that those who want the opposite of what I stand for and who refuse to work with me on any issue probably know something that I don’t, and I should listen to them. That I will never abandon.
When I see someone who wants to put polio back on the map, I just see one more opportunity for compromise. Why, if enough of us say, “You know what, in all that ranting about fluoride, I heard one word that made a kind of sense! Say more! I bet we can find common ground!” maybe the other side will stop believing what they believe and change their entire worldview! Isn’t that what happened to Scrooge? It’s not? Well, never mind.
If I just listen hard enough and agree to find common ground, I am certain the other party will be the one to change. That’s usually what makes people change: when you give up defending your position completely! Then they budge. I hope! That’s certainly what I’m counting on for the next four-plus years!
When I read the sentence “Unless enough people find the spine to oppose his appointment, Robert F. Kennedy Jr. will soon be in charge of the Department of Health and Human Services,” what I see is not a call to find some spine (impossible) and remind others of the stakes of not doing so. When has anyone found a congressional spine, except RFK Jr. while out on one of his weekly Hikes in Search of Surprising Things to Put Into His Freezer?
No, what that sentence means is: We need to start thinking of ways to compromise now! Compromise public health, compromise public safety, compromise all of our principles! Because that’s what the country needs: more things to be compromised.
Whooping cough is one of the diseases that had been virtually eliminated thanks to the development of effective vaccines. But with the rise in vaccine skepticism, whooping cough is on the rise. If RFK Jr. is confirmed as the nation’s Secretary of Health and human Services, we can expect the return of many once-vanquished diseases.
Whooping cough continues to surge in the United States, with reported cases soaring to more than 32,000 this year — nearly five times the 6,500 cases recorded during the same period last year — marking the highest levels in a decade. Health experts cite as main culprits for the increase waning vaccination rates and a loss of broad immunity tracing to coronavirus lockdown protocols.
The disease, caused by the bacterium Bordetella pertussis, is highly transmissible from person to person through the air. Because of their immature immune systems, infants younger than 1 year old are at highest risk of contracting whooping cough — also known as pertussis — and are at most significant risk of severe illness.
Vaccination rates with the DTaP shot — which protects against diphtheria, tetanus and pertussis — declined from March through September 2020 at the height of the coronavirus pandemic. But because people were following pandemic protocols such as masking and social distancing, cases did not soar. Some children who missed getting their shots during that period may never have received them, experts have said…
Health experts worry that the incoming administration could impede efforts to increase vaccination rates among vulnerable populations.
Robert F. Kennedy Jr., whom President-elect Donald Trump selected to lead HHS, will have significant influence over vaccine production and safety. Kennedy has been a longtime anti-vaccine activist, and many health experts express concerns that he could contribute to waning vaccination rates.
Although he has said he is not anti-vaccine, Kennedy has criticized the recommended list of childhood vaccines and promoted debunked claims about autism and vaccines.
In a recent issue of The New Yorker, physician Dhruv Khullar writes about what happened to the practice of medicine when private equity began buying up hospitals and group practices. The result of privatization of healthcare was not surprising: the desire for profit became more important that the drive to improve patients’ health. Private equity was very successful in squeezing handsome profits out of community hospitals, but all too often those hospitals went bankrupt, leaving the communities without a hospital. Dr. Khullar says we are now in “the Gilded Age” of medicine, where wealth and corporate power are in charge.
Dr. Khullar is a physician and associate professor of health policy and economics at Weill Cornell Medical College.
Dr. Khullar wrote:
In 2010, a private-equity firm called Cerberus Capital Management, which is named for the three-headed dog that is said to guard the underworld, bought six Catholic hospitals in Massachusetts and christened the chain Steward Health Care. The state’s attorney general blessed the deal on multiple conditions, including that, during a five-year review period, the hospitals stayed open and their workers stayed employed. A few months after the period ended, however, Steward started selling the land on which the hospitals stood. A $1.25-billion-dollar deal, in 2016, helped to finance more acquisitions. Many facilities, asked to pay rent on land they’d previously owned, struggled.
According to a recent report published by Massachusetts Senator Ed Markey’s office, which covers the period between 2017 and 2024, some Steward facilities had to forgo key investments in staffing, surgical equipment, elevator repairs, and even clean linens. Patients increasingly languished in emergency rooms; many left without receiving care; and mortality rates for common conditions climbed sharply. (Steward has argued that its death rates were better than expected, given the underlying health status of the patients it cared for.) A hospital in Florida developed a bat infestation, and another, in Texas, was cited for placing potentially suicidal patients in rooms with materials with which they could hang themselves. Employees at Steward’s Carney Hospital, in Massachusetts, began calling their workplace “Carnage” hospital. (Cerberus’s ownership ended in 2020, and the firm claims that the quality issues at Steward are “overwhelmingly related to the post-Cerberus ownership period.”)
In May, Steward filed for bankruptcy. It has closed two hospitals and plans to sell thirty-one others. Steward’s C.E.O., Ralph de la Torre, who in 2011 purchased a forty-million-dollar superyacht, was subpoenaed by a Senate committee but failed to show up; he was held in contempt of Congress and resigned from his position. (De la Torre, in turn, sued the committee for violating his right against self-incrimination.) Nonetheless, Cerberus realized a profit of seven hundred and ninety million dollars from its investment in Steward. Meanwhile, in some places in the U.S., private-equity firms now own more than half of all medical practices within certain specialties. “We are being picked clean by private equity,” a New Jersey-based radiologist said at a recent meeting of the American Medical Association. “There are people who don’t know where their next paycheck is even going to come from because their groups have been flipped so often.”
2024 was arguably the year that the mortal dangers of corporate medicine finally became undeniable and inescapable. A study published in JAMA found that, after hospitals were acquired by private-equity firms, Medicare patients were more likely to suffer falls and contract bloodstream infections; another study found that if private equity acquired a nursing home its residents became eleven per cent more likely to die. Although private-equity firms often argue that they infuse hospitals with capital, a recent analysis found that hospital assets tend to decrease after acquisition. Yet P.E. now oversees nearly a third of staffing in U.S. emergency departments and owns more than four hundred and fifty hospitals. In some of them, patients were “forced to sleep in hallways, and doctors who spoke out were threatened with termination,” according to Jonathan Jones, a former president of the American Academy of Emergency Medicine.
Erin Fuse Brown, a professor at the Brown University School of Public Health, told me that private-equity firms have learned that they “don’t have to make things better or make them more efficient. You can just change one small thing and make a ton more money.” They are hardly the only corporations to learn this lesson. Increasingly, health insurers, private hospitals, and even nonprofits are behaving as though they aim first to extract revenue, and only second to care for people. Patients often are viewed less as humans in need of care than consumers who generate profit.
In 1873, Mark Twain co-wrote the novel “The Gilded Age: A Tale of Today,” which satirized an era that was marked by inequality, greed, and moral decay but was painted in a veneer of abundance and progress. Industrialists made fortunes in oil, steel, and shipping even as millions suffered poverty and exploitation. Today, health care is where the money is. New technologies and treatments sustain the impression that patients have never been healthier, but corporations and conglomerates wield immense power at the expense of the people they’re meant to serve. Welcome to the Gilded Age of medicine.
In recent years, health-care corporations have embraced an approach that can only be described as gamification. In the U.S., all seniors over sixty-five are entitled to health insurance through Medicare, and, for several decades, private companies have offered plans through programs such as Medicare Advantage. The government pays insurance companies a fixed sum based partly on how sick those patients are. The sicker the patients, the bigger the potential payments. But who’s to say, really, how sick a patient is? Let the games begin.
This year, the health-news site STAT revealed that UnitedHealth, the country’s largest private insurer, had set up dashboards for practices to compete on how many conditions they could diagnose in patients. Doctors who completed the most appointments with seniors in Medicare Advantage were eligible for ten-thousand-dollar bonuses, and patients were offered seventy-five-dollar gift cards for getting checkups at which their medical histories could be recorded. At the height of the covid-19 pandemic, an e-mail sent to one practice told clinicians that documenting chronic illnesses was the “#1 priority.”
Insurance companies have even started to scour medical records for possible diagnoses, and to send nurses to patients’ homes to perform “health-risk assessments.” These strategies rack up so many additional diagnoses that, in 2023 alone, the federal government made $7.5 billion in “overpayments” to insurers, according to the U.S. Office of the Inspector General. Insurers are “pouring tremendous resources into developing the capacity to code patients in a way that nets more money from Medicare,” Donald Berwick, a former head of the Center for Medicare & Medicaid Services, told me. “That’s taxpayer money being siphoned away from people who need it.”
Berwick said that his own physician’s practice had recently been acquired by UnitedHealth. One day, he asked his doctor, “Anything different now?”
“Two things,” the doctor replied. “I have to see more patients each day. And my patients have new diagnoses that I didn’t put there.” Many patients with atrial fibrillation, for example, were now coded as having another condition known as “hypercoagulable state”—which was technically accurate, but didn’t change patients’ care in any way. It did, however, generate higher payments from Medicare. Ask not what your insurer can do for you—ask how much revenue you can generate for your insurer.
The insurance companies in Medicare Advantage tend to argue that they’re simply recording diagnoses, not making them up; that they offer vision and dental benefits that traditional Medicare doesn’t offer; and that they rein in unnecessary care, such as by requiring prior authorization for certain tests and procedures. But according to the Medicare Payment Advisory Commission, a nonpartisan agency that counsels Congress, private Medicare Advantage plans will cost the federal government eighty billion dollars more per year than if those patients had been in the traditional Medicare program. “You might as well flush most of that eighty billion dollars down the toilet,” Berwick told me.
On December 4th, after I drafted this piece, Brian Thompson, the C.E.O. of UnitedHealthcare, was fatally shot in midtown Manhattan. In the days that followed, the public response was not just one of shock but also of frustration and even rage against the health-insurance industry. Someone posted in a subreddit for nurses, “Honestly, I’m not wishing anyone harm, but when you’ve spent so much time and made so much money by increasing the suffering of the humanity around you, it’s hard for me to summon empathy that you died.” The comedian Bill Burr compared C.E.O.s like Thompson to gangsters. “It’s a dirty game,” he said. “Health care—dirty game.” I was saddened by the callousness of these comments. Thompson had become a symbol of a broken system; people who devalued his life, it seemed to me, were engaging in a version of the dehumanizing behavior that they found objectionable within the health-care industry.
Please open the link to finish reading the article.
Mercedes Schneider read a story last spring about a man who contracted polio in 1952 when he was six years, survived it, but spent the next 72 years dependent on an iron lung. Despite his limited ability to survive outside the machine, Paul Alexander finished college and law school, then practiced law. Before his death, he became a TikTok star.
When she read the story, it was interesting– but now it’s timely. After all, Trump has appointed a vaccine critic to run the Department of Health and Human services. Trump himself said in a national interview that he is skeptical about mandating vaccines for school children.
So Mercedes decided it was time to do some research about polio. Her post is engaging and brings back memories for those of us who were in school before the first vaccine was discovered and made available. We lived in terror of getting polio.
Alexander said:
In one video, Mr. Alexander detailed the emotional and mental challenges of living inside an iron lung.
“It’s lonely,” he said as the machine can be heard humming in the background. “Sometimes it’s desperate because I can’t touch someone, my hands don’t move, and no one touches me except in rare occasions, which I cherish.”
Chris McNaighton was an athlete in college and led an active life until tragedy struck: he was diagnosed with a painful, debilitating disease called ulcerative colitis. He was so disabled by its symptoms that he became housebound. After trying many treatments and doctors, he finally went to the Mayo Clinic, where a specialist prescribed a mix of drugs that were very expensive but saved his life.
Chris was covered by his parents’ insurance; they were both faculty members at Penn State. Chris enrolled at Penn State, so he was covered as a student as well.
UnitedHealth did not like paying the cost of Chris’s treatment. It was $2 million a year. It had Chris’s claims reviewed by doctors who denied them and said he could do with a lower dose, which would cost less. The doctor at Mayo responded that lower doses were ineffective.
Christopher McNaughton suffered from a crippling case of ulcerative colitis — an ailment that caused him to develop severe arthritis, debilitating diarrhea, numbing fatigue and life-threatening blood clots. His medical bills were running nearly $2 million a year.
United had flagged McNaughton’s case as a “high dollar account,” and the company was reviewing whether it needed to keep paying for the expensive cocktail of drugs crafted by a Mayo Clinic specialist that had brought McNaughton’s disease under control after he’d been through years of misery.
In the wake of the brutal murder of United Healthcare’s CEO, there has been an outpouring of stories about UnitedHealthcare’s strategy of denying claims to increase profits.
As a result, we have a very expensive healthcare system, in which people’s claims for coverage are frequently denied. Many people pay through the nose and don’t get the medical care they need because of their insurance companies.
His article is titled: “When Profits Kill: The Deadly Costs of Treating Healthcare as a Business.”
Hartmann wrote:
The recent assassination of the CEO of UnitedHealthcare — the health insurance company with, reportedly, the highest rate of claims rejections (and thus dead, wounded, and furious customers and their relations) — gives us a perfect window to understand the stupidity and danger of the Musk/Trump/Ramaswamy strategy of “cutting government” to “make it more efficient, run it like a corporation.”
Consider health care, which in almost every other developed country in the world is legally part of the commons — the infrastructure of the nation, like our roads, public schools, parks, police, military, libraries, and fire departments — owned by the people collectively and run for the sole purpose of meeting a basic human need.
The entire idea of government — dating all the way back to Gilgamesh and before — is to fulfill that singular purpose of meeting citizens’ needs and keeping the nation strong and healthy. That’s a very different mandate from that of a corporation, which is solely directed (some argue by law) to generate profits.
The Veterans’ Administration healthcare system, for example, is essentially socialist rather than capitalist. The VA owns the land and buildings, pays the salaries of everybody from the surgeons to the janitors, and makes most all decisions about care. Its primary purpose — just like that of the healthcare systems of every other democracy in the world — is to keep and make veterans healthy. Its operation is nearly identical to that of Britain’s beloved socialist National Health Service.
UnitedHealthcare similarly owns its own land and buildings, and its officers and employees behave in a way that’s aligned with the company’s primary purpose, but that purpose is to make a profit. Sure, it writes checks for healthcare that’s then delivered to people, but that’s just the way UnitedHealthcare makes money; writing checks and, most importantly, refusing to write checks.
Think about it. If UnitedHealthcare’s main goal was to keep people healthy, they wouldn’t be rejecting 32 percent of claims presented to them. Like the VA, when people needed help they’d make sure they got it.
Instead, they make damn sure their executives get millions of dollars every year (and investors get billions) because making a massive profit ($23 billion last year, and nearly every penny arguably came from saying “no” to somebody’s healthcare needs) is their real business.
On the other hand, if the VA’s goal was to make or save money by “being run efficiently like a company,” they’d be refusing service to a lot more veterans (which it appears is on the horizon).
This is the essential difference between government and business, between meeting human needs (social) and reaching capitalism’s goal (profit).
It’s why its deeply idiotic to say, as Republicans have been doing since the Reagan Revolution, that “government should be run like a business.” That’s nearly as crackbrained a suggestion as saying that fire departments should make a profit (a doltish notion promoted by some Libertarians). Government should be run like a government, and companies should be run like companies.
Given how obvious this is with even a little bit of thought, where did this imbecilic idea that government should run like a business come from?
Turns out, it’s been driven for most of the past century by morbidly rich businessmen (almost entirely men) who don’t want to pay their taxes. As Jeff Tiedrich notes:
“The scariest sentence in the English language is: ‘I’m a billionaire, and I’m here to help.’”
Rightwing billionaires who don’t want to pay their fair share of the costs of society set up think tanks, policy centers, and built media operations to promote their idea that the commons are really there for them to plunder under the rubric of privatization and efficiency.
They’ve had considerable success. Slightly more than half of Medicare is now privatized, multiple Republican-controlled states are in the process of privatizing their public school systems, and the billionaire-funded Project 2025 and the incoming Trump administration have big plans for privatizing other essential government services.
The area where their success is most visible, though, is the American healthcare system. Because the desire of rightwing billionaires not to pay taxes have prevailed ever since Harry Truman first proposed single-payer healthcare like most of the rest of the world has, Americans spend significantly more on healthcare than other developed countries.
In 2022, citizens of the United States spent an estimated $12,742 per person on healthcare, the highest among wealthy nations. This is nearly twice the average of $6,850 per person for other wealthy OECD countries.
Over the next decade, it is estimated that America will spend between $55 and $60 trillion on healthcare if nothing changes and we continue to cut giant corporations in for a large slice of our healthcare money.
On the other hand, Senator Bernie Sanders’ single-payer Medicare For All plan would only cost $32 billion over the next 10 years. And it would cover everybody in America, every man woman and child, in every medical aspect including vision, dental, psychological, and hearing.
If we keep our current system, the difference between it and the savings from a single-payer system will end up in the pockets, in large part, of massive insurance giants and their executives and investors. And as campaign contributions for bought off Republicans. This isn’t rocket science.
And you’d think that giving all those extra billions to companies like UnitedHealthcare would result in America having great health outcomes. But, no.
Despite insanely higher spending, the U.S. has a lower life expectancy at birth, higher rates of chronic diseases, higher rates of avoidable or treatable deaths, and higher maternal and infant mortality rates than any of our peer nations.
Compared to single-payer nations like Canada, the U.S. also has a higher incidence of chronic health conditions, Americans see doctors less often and have fewer hospital stays, and the U.S. has fewer hospital beds and physicians per person.
No other country in the world allows a predatory for-profit industry like this to exist as a primary way of providing healthcare. Every other advanced democracy considers healthcare a right of citizenship, rather than an opportunity for a handful of industry executives to hoard a fortune, buy Swiss chalets, and fly around on private jets.
This is one of the most widely shared graphics on social media over the past few days in posts having to do with Thompson’s murder…
Sure, there are lots of health insurance companies in other developed countries, but instead of offering basic healthcare (which is provided by the government) mostly wealthy people subscribe to them to pay for premium services like private hospital rooms, international air ambulance services, and cosmetic surgery.
Essentially, UnitedHealthcare’s CEO Brian Thompson made decisions that killed Americans for a living, in exchange for $10 million a year. He and his peers in the industry are probably paid as much as they are because there is an actual shortage of people with business training who are willing to oversee decisions that cause or allow others to die in exchange for millions in annual compensation.
That Americans are well aware of this obscenity explains the gleeful response to his murder that’s spread across social media, including the refusal of online sleuths to participate in finding his killer.
It shouldn’t need be said that vigilantism is no way to respond to toxic individuals and companies that cause Americans to die unnecessarily. Hopefully, Thompson’s murder will spark a conversation about the role of government and the commons — and the very real need to end the corrupt privatization of our healthcare system (including the Medicare Advantage scam) that has harmed so many of us and killed or injured so many of the people we love.
For five days, the public was obsessed with the search for the man who murdered the CEO of United Healthcare. For a while, he seemed to be a mastermind, evading the surveillance state that so closely monitored his movements. But then he was caught while eating breakfast at a McDonald’s in Altoona, PA.
There is no excuse for murder. None, unless you are acting in self-defense, which Luigi Mangione was not. He has ended the life of Brian Thompson, the CEO of UHC, and simultaneously destroyed his own life. He is likely to spend the rest of his life in prison. Couldn’t he have thrown a bucket of red paint in protest? Or a cream pie?
The health insurance industry in this country is a mess. Most insurance companies operate for profit, and their actions seem to based on the prospect of profit, not the well-being of their customers. The industry makes obscene profits, based on its frequent denials of reimbursement.
This post was written by Qasid Rashid. When he learned that his child had a deadly disease, he sought help from his insurance company but was repeatedly denied any help. Read the story. It shows how repellent privatized for-profit insurance is. The insurance company was willing to let the child die rather than pay the cost of her desperately needed treatment.
He and his wife wrote:
This article is a deeply personal and vulnerable piece about our daughter Hannah Noor. It is primarily written by my wife Ayesha Noor. We are sharing this not because our daughter’s story is special, but sadly, because her story is all too common. Every year thousands of children and adults suffer incomprehensible pain, suffering, and even death. They suffer not because we lack the means to treat them, but because exploitative insurance companies, incompetent bureaucrats, and apathetic politicians deny them access to the life saving care they need. In light of recent events [See: America’s Violent Health System], we are sharing this story to bear witness to the preventable suffering of so many, the deadly violence imposed upon them, and to give hope that even in the darkest of times things can get better if we demand it. Let’s Address This.
Hannah Noor (Pictured Right) at 5 hours old.
A Scream in the Dark
It was just after her sixth birthday in 2021 when our daughter screamed from her bed in the middle of the night. We rushed to her room to find she had thrown up all over her bed. We cleaned her up, changed her sheets, and blamed the incident on the Oreos she’d eaten after dinner. The next day she complained of a stomach ache and rushed to the bathroom, experiencing diarrhea. Like most parents, we dismissed it as a passing bug—kids get diarrhea now and then. But something felt different this time, even though it was her first experience.
When it happened again just a short time later, the stomach pain was more severe. She screamed, cried, and rushed to the bathroom, but this time there was blood—so much blood. It terrified us. Before we could even make it to urgent care, she had another episode with even more bleeding. We hurried her in, only to be told by the nurse practitioner to “keep her hydrated” and that it was probably a stomach virus. But again, something in our gut told us otherwise.
This was just before Thanksgiving 2021, and I convinced myself she’d recover over the break and be able to return to school. She loved school, as most kindergarteners do. But the bleeding continued. The pain worsened. More urgent care and pediatrician visits followed, but answers did not. By now, our once energetic and chatty daughter was pale, frightened, and visibly losing weight.
Navigating Through the Dark
We reached out to a close friend who happened to be a pediatric gastroenterologist. His questions and careful listening indicated it was not a simple virus, but he didn’t say much directly. He urged us to connect with the GI team at Children’s National Hospital in Washington D.C. Unfortunately, we were met with insurance hurdles and skepticism from her pediatrician. Weeks passed, and her condition deteriorated until, thanks to our friend’s intervention, we finally secured an appointment with a pediatric GI doctor in December.
Hannah Noor, now frail and scared, was put on iron supplements, and an colonoscopy was scheduled for January. She now weighed just 30 pounds—skin and bones, and we feared the worst. Her fear of eating, going to the bathroom, or even moving too much consumed her days. Our winter break became a period of sleepless nights, endless tears, and prayers. We felt like prisoners trying to navigate through treacherous terrain while blindfolded and shackled.
The preparation for the scope was grueling—a 24-hour liquid diet. To make matters worse, a severe snowstorm in early January 2022 left us without power for three days. Despite the chaos, we made it to the hospital. As I held her tiny hand, she bravely went under anesthesia. Hours later, the doctors confirmed what we feared: Hannah had ulcers all over her colon.
Inflammatory Bowel Disease (IBD) was the diagnosis—a chronic, lifelong condition that would require extensive management. Even as the doctor explained, I couldn’t fully grasp the gravity of it. I naively asked, “How long will she need the medication?” The doctor replied—“Do you understand what it means to have IBD? This is for life.”
It shattered me. My world crumbled.
Steroids, with their array of side effects, initially helped stabilize her condition, and she was subsequently started on mesalamine. However, managing IBD is never straightforward. Moving homes and finding a new doctor compatible with our insurance became an uphill battle. Procuring mesalamine was a nightmare, as our insurance kept on requiring prior-authorization—a term we’d never even heard before. Evidently, even though our doctor had prescribed a specific medication to save our daughter’s life, the insurance company required their non-medically trained admins to agree that our board certified physician knew what she was doing in prescribing the medication she prescribed. Spoiler: They disagreed and repeatedly denied the critical medication our daughter needed.
Making matters worse, moving meant we were in between doctors. Desperate to try anything to improve Hannah’s quality of life, we spent hours consulting with a nutritionist to see if dietary changes could make a difference. We invested extensive time and resources into a gluten-free diet, but it did not help at all; in fact, it made her averse to eating. We also tried the FODMAP diet, which was recommended during a flare, but it added to the confusion of what she should or shouldn’t eat. Every day became a battle over something as simple as food—one filled with uncertainty and frustration. Despite our efforts, Hannah’s condition remained unpredictable, with debilitating flares continuing to disrupt her life. By late 2023, we had pursued every imaginable route to find a way to protect our daughter’s health and life, and yet felt exhausted and at a dead end.
It was clear that only one option remained—she needed a quickly advancing form of therapy known as biological treatment. This would be a direct IV infusion of medication to stabilize the IBD, every six to eight weeks, forever.
A Dark Dead End
We were at the end of the road. If we couldn’t access biologic treatment, there was nowhere left to go. But what we hoped would finally bring us closure and healing, resulted in yet another emotional roller coaster and painful circus—our insurance corporation blocked us. Turns out, insurance corporations block more than 51% of patients whose doctors prescribe them biologic treatment to save their lives.
The recommended biologic promised not a cure, but a chance at living a healthy life. Our insurance rejected us outright reasoning that we hadn’t tried other medications first—a policy called “step therapy.” Despite our daughter’s life threatening condition, they wanted us to try every other variation of every other possible medication—knowing full well they would likely fail just as much and make our daughter suffer, vomit, bleed, and lose weight. But that did not matter to them, because that was the preferable path to ensure they “maximized shareholder value.”
Our doctor stepped in and conducted a peer-to-peer direct meeting with the insurance company to show all the data, blood tests, and medical reports to prove that our daughter needed biologics to live. To show without a shadow of a doubt that the yet untried medications they demanded we try were not substantively different than the plethora of medications we had tried and had not worked. Yet, that meeting also went in vain. The insurance company still refused to approve our claim. And Hannah Noor’s condition worsened. She was pale, swollen from steroids, in pain, losing weight, and back to missing school.
We finally contemplated paying for the biologic treatment out of pocket. We knew it would only require six doses a year. How much could one dose be, after all? We checked and our hearts sank once more. Each dosage cost and administration would run into the tens of thousands of dollars. A year’s supply to keep our daughter alive would run into the hundreds of thousands. We certainly did not have that kind of money. We were cornered and desperate.
We contemplated what any parents might. Do we sell the house and cars and move into a small apartment? Do we set up a GoFundMe? Do we borrow money from family and friends? Do we take out a second mortgage?
Do we file for medical bankruptcy, as 500,000 Americans do annually?
But we soon learned another sinister result of hyper-privatization of health insurance—even if we had the excessive means to pay the hundreds of thousands of dollars out of pocket, the hospital would not accept the funds. Why? The industry is such that not only do insurance companies deny 51% of claims, they have enacted policies forbidding people from paying for the critical medication they need out of pocket, lest the insurance company lose control and revenue. “Either you pay us, or you pay no one,” is a line you’d expect out of a mafia handbook—not out of a health provider. This is not health insurance, this is health exploitation.
A Spark of Light in the Darkness
In that moment of confusion we happened to run into to a fellow parent who, now is a great friend, and learned her children shared a similar medical struggle. She suggested calling the biologic manufacturers directly and applying for their patient assistance program. An idea that seems so obvious now, but something we did not even know was a possibility then.
The application process was tedious, and even then, it was initially rejected. But after weeks of back-and-forth, countless phone calls, and sleepless nights, a miracle happened—we finally secured approval. We let out a cathartic sigh of relief after more than two years of suffocation. And to be sure, the approval was not through our insurance company, who never even bothered to offer such an option, likely because it would cost them money. Rather, the approval was from the drug manufacturer directly. To this day our health insurance company has refused to budge on their cruel and calloused “maximizing shareholder value” decision to deny our daughter the medicine she needs to live.
On March 6, 2024—more than two months after the doctor first prescribed it, a period in which our daughter suffered horrific and unimaginable pain, bleeding, and vomiting—Hannah Noor received her first infusion at Comer Children’s Hospital in Chicago. And since then, everything has changed. Her spark of light returned. Our daughter was back.
The Light We Create
A process that should have only taken 30-60 days from the night we heard that scream in the dark, took us on a 28 month torturous journey to finally see light again. Hannah Noor’s journey since starting biologic treatment has been a blessing. She’s eating, playing, drawing, and even learning karate (currently a Yellow Belt). The last three years of her life had been a torture for her, but now she is finally thriving as any 9-year-old girl should. Though the fear of flares always looms, we refuse to let it dictate our lives. Herbal and homeopathic treatments complement her medical regimen, and her strength inspires us daily.
As for our insurance company? Those corporate leeches also denied covering the hospital costs as well. Fortunately, despite that high price tag still running into the thousands, we tightened our belts and found a way to pay for that out of pocket, and continue to pay for that out of pocket. (We were shocked there wasn’t some additional insurance rule preventing us from paying our hospital directly). Despite us paying our insurance premiums every single month without exception, our insurance company has not covered a single penny of our daughter’s critical healthcare needs. The care she needs to live. But at least they’re maximizing shareholder value.
This story isn’t just about one child’s struggle with IBD; it’s about the systemic barriers hundreds of millions of families face every single day. From insurance denials to inaccessible care, to step therapy nonsense, to prior authorization red tape, the system fails the most vulnerable. What if we didn’t speak English? What if we couldn’t afford out-of-pocket costs for tests and treatments? What if one of our close friends didn’t just happen to be a national expert on this particular rare disease, and couldn’t leverage his relationships to get us access to a world leading expert? What if we didn’t have a network of supportive friends to recommend new ways to acquire this life saving medicine?
A Brighter Future Is Possible
We named our daughter Hannah Noor because Hannah was the mother of Mary Mother of Jesus, and Noor means light. We couldn’t think of a more beautiful name for our only daughter, and she has lived up to it every day of her life.
In these darkest of times, she is the Light of our eyes.
Hannah Noor (now 9) at a recent family vacation in Lahore, Pakistan. Here she is giggling at a cat that wandered over to say meow, which Hannah Noor reminded us means “hello” in cat language.
Hannah Noor’s story highlights a flawed and cruel system that places profits over people. Yet it also underscores the power of advocacy, persistence, and community. To every parent navigating the complexities of chronic illness: stay strong, fight relentlessly for your child, and lean on the resources available, like the Crohn’s and Colitis Foundation, and do not underestimate support groups on Facebook. If I can be of any support, do not hesitate to reach out at ayesha [dot] noor @ gmail.com.
Hannah Noor is living proof that even in the darkest moments, there is hope. She teaches us daily to believe in miracles—and to fight for them when necessary. It is also a reminder that our for profit exploitative health insurance system will always only serve the wealthy elites, the stock market, and whatever private investor who decides to buy and sell these corporations. They will not serve the people. Not our beautiful baby girl, nor the nearly 70,000 Americans who die annually due to lack of care, nor the 500,000 Americans who are forced to file for medical bankruptcy every single year. It is by the sheer grace of the Almighty that we still have our wonderful Light with us today. But for so many parents and families, the end result is not so fortunate.
Perhaps the most frustrating part about all of this is that the medication to save our child’s life existed all along. But because some calloused business person decided her life wasn’t profitable enough and worth saving, it was an acceptable cost to reject her claim and let her die.
It is our responsibility to demand better, not just for our daughter, but for all the daughters, sons, and children out there. We do not suffer from a lack of resources, but from an excess of greed. We can ensure high quality, accessible, and affordable healthcare for all people in this country—but we cannot ensure the satiation of greed for the billionaire corporations, corrupt politicians, and elitists who care more about shareholder value than the survival of innocent children. We have to choose one side. And we choose the children of this great country—we hope you do too.
For years, the City of New York has tried to force its public service retirees to give up their Medicare and move to a private Medicare Advantage plan. Many retirees understood that MA means privatization. Any serious medical needs required prior approval by the insurance company; it also meant that the insurance company could decline to pay. Retirees were furious, but it seemed hopeless, especially when a few powerful unions, including the United Federation of teachers, supported the city’s plan.
Marianne Pizzitola, who retired as an Emergency Medical Technician for the Fire Department, organized resistance to the plan. She found other retirees who were opposed to giving up Medicare and educated others about the downside of making the change. Marianne created an organization called the NYC Organization of Retired Public Service Workers.
The organization lobbied elected officials, litigated, and kept up the pressure.
Today, they won! They stood up the government of the City of New York, against overwhelming odds. And they won!
Brad Lander, the Comptroller of the City of New York sent out this letter this evening:
Dear New Yorkers,
Massive news for New York City retirees: Today the New York Court of Appeals rejected shifting retirees to a Medicare Advantage plan.
Today’s ruling is the final win for the 250,000 some retirees fighting to keep the health care they worked for and were promised! Seniors will continue to have access to all providers who accept Medicare, a victory for our public sector retirees.
The City’s Medicare Advantage plan would have constrained our retirees to a smaller network with more restrictive requirements on care. Many public servants entered the municipal workforce with the promise of middle-class wages, pensions, and a retirement plan. The shift to anything less than that full promise was a hard pill to swallow.
When the Medicare Advantage contract was submitted to my office last year, we declined to register it, knowing that litigation raised doubts about the City’s authority to enter into the contract. As a matter of public policy, beyond the scope of our office’s specific Charter responsibility for contract registration, I was seriously concerned about the privatization of Medicare plans, overbilling by insurance companies, and barriers to care under Medicare Advantage.
It is vital that all our seniors—and all New Yorkers—get quality health coverage as a basic human right. At the same time, given the growing costs of health care for both retirees and active employees, we cannot ignore that there are real cost questions facing the City when it comes to health care.
Diane Ravitch's blog 