When Insurance Rejects Life Saving Care

A deeply personal and vulnerable story about our daughter, the power of resilience, and the desperate need for change

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.