It lurked in the back corner, the deep blues and verdant greens of its leafy pattern still gorgeous despite the fluorescent lights overhead. Even from 30 feet away, I knew it was a prize – a Diane von Furstenberg wrap dress in the ultra mark-down section of Loehmann’s, the legendary New York discount store.
I sped toward it, my gaze focused on the red price sticker – $39.99. Original price: $398. And it was exactly my size. My cortisol surged.
The granddaughter of Depression-era farmers and daughter of a librarian and a minister richer in heart than money, I was raised to save always and pay full price never.
I squeezed multiple jobs in between my full load of graduate school classes, scraping together $1200 a month for my essentials. I paid my tuition with savings from my prior years teaching public school. I allowed a small amount per month for treats – a fancy coffee, a meal out, a trip to bargain shopper’s mecca.
I snatched up my treasure and beelined for the crowded dressing room, anticipating a perfect fit.
Yet it hugged my middle too snugly, leaving an awkward gap in the skirt. I shrugged it off, figuring I was gassy from my green and grainy lunch. No bloating would ruin this bounty. I rode the subway home giddy, clutching the receipt documenting my 90-percent-off deal.
But each time I took the dress out of the closet, it fit less and less. I wouldn’t know it for months, but my growing belly was not from too much fiber. A rare malignant tumor was expanding it slowly.
As a twenty-five-year-old vegetarian with normal annual physicals, an active lifestyle and grandparents who stayed healthy into their 90s, I had assumed any medical problems were decades away.
Suddenly I found myself frantically calling the hotline of my bare-bones student health insurance to find an in-network surgeon. If my tumor wasn’t treated promptly, I wouldn’t survive until graduation.
I found a surgeon near me that took my plan and was lucky to get a prompt appointment. He reviewed my scan, pressed on my belly and did not mince words.
“There’s a more than 50 percent chance you’ll die on the operating table if I do your surgery,” he warned.
“For a tumor this large, you need a surgeon who is very specialized, and more experienced than I am,” he admitted. “I’ll refer you over to Memorial Sloan Kettering Cancer Center.”
I was lucky to live just a short subway ride from Sloan-Kettering, among the best cancer hospitals in the world. But it was outside my limited insurance network.
With a rare diagnosis like mine – liposarcoma – your choices of care become scant. Most doctors don’t have the training and experience to treat such unusual diseases; such expertise exists only at a few specialized hospitals. Their care is top-notch, but expensive.
Thanks to a strong research mission, power to bargain with insurance companies, and charitable funds, such hospitals can take patients like me who, despite having insurance, wouldn’t be able to afford their care.
I deferred thoughts of finances and focused on my treating my tumor. A long surgery cut it out with little complication. After a week of excellent hospital care, I returned to my tiny apartment to heal.
The bills started coming while I was still eating pureed foods and popping Percocets. My insurance covered much less than anticipated, using tangles of limitations, copayments and technicalities to avoid paying for my life-saving care.
I still owed tens of thousands of dollars – more than I made in a year. Panicked, I called the social worker I’d met at Sloan-Kettering. She assured me the hospital had a special fund to help.
Fueled by hope, I trudged to the hospital’s financial aid office, trying to ignore the sharp pangs from my foot-long abdominal incision as I lugged several pounds of paperwork. The application required documentation of five years of bank statements, proof of income and tax returns.
Months and more inches of paperwork later, I was approved. The hospital wrote off most of my uncovered bills and allowed me to make small manageable payments on the rest. Only the luck of charity kept me from bankruptcy.
I finished my master’s degree, worked that summer to pay the copayments on my every-3-month scans and checkups and started medical school that fall.
My story is not unique. Now, as a pediatrician working in the emergency department, I see people struck with unexpected illness or accident every day. They are completely healthy until they’re not. My patients wake up expecting a normal Tuesday, only to find themselves hit by a car, seizing, raped, breaking a leg or needing prompt surgery for a ruptured appendix.
As humans, we all will need medical care – when we’re born, when we die, and likely many moments in between.
We can manage our health by eating more vegetables and less junk, lacing up our sneakers for a daily jog, getting our vaccines, wearing our seatbelts or quitting smoking. But beyond these attempts, we have little control over how or when we become ill. We have even less control over what our treatments will cost.
Paying for medical treatment is not like life’s other consumer purchases. You can generally decide between Aldi’s or Whole Foods, Gap or Gucci, Ford or Lexus, Walmart or Neiman Marcus. The same choice rarely exists in medicine.
We can’t control whether our broken arm will require a simple cast or rods and pins placed during a grueling orthopedic surgery. Whether our new baby will be born perfectly healthy or with a congenital heart defect. Whether we will die suddenly at home with only a funeral bill, or if our death will come after days of expensive, heroic efforts in the intensive care unit.
The costs of a life-saving treatments – the procedure to treat your aneurysm, the surgery for your ectopic pregnancy, your premature baby’s weeks in the neonatal intensive care unit, the chemotherapy to cure your cancer – routinely exceed what 99 percent of people could ever afford. There is rarely a chance to bargain shop. Often the only discount option is forgoing care, leaving you disabled or dead, or becoming enslaved to a lifetime of debt.
There are effective ways to reduce healthcare costs – prioritizing primary and preventative care, shifting funds from administration to clinical care, reducing physician malpractice costs, incentivizing physicians to practice in high-need areas and using collective power to negotiate lower prices with device and drug manufacturers.
But leaving people without reliable access to care – whether through exorbitant premiums and deductibles, insurance that covers only catastrophic illnesses and not preventative care, exclusions for pre-existing conditions, limitations on essential benefits or drastic cuts in Medicaid and Medicare – will only increase costs.
When healthcare is made inaccessible or unaffordable, it’s not just the afflicted individual who suffers. Families lose their homes, businesses lose workers, charitable funds are drained, the next great inventor never survives childhood, children are left motherless too early, contagious infections like HIV and tuberculosis spread and kill more people than necessary.
Since we will all need to use health care, though in unpredictable amounts and with variable costs, and our own health will impact those around us, it makes sense to all contribute to a system that is there for each of us when we need it. Affordable accessible insurance for everyone, whether through Medicare-for-All or regulated ACA-style insurance exchanges, would help people remain healthy and productive citizens.
Several cancer recurrences have left my body scarred, but the protections of the Affordable Care Act, brief help from Medicaid and consistent employer-based insurance have allowed me to afford the care I’ve needed to stay alive. I am still around to pay taxes, donate regularly to cancer research organizations, continue practicing medicine in a place where I can treat children regardless of their family’s income and parent my daughter.
I held on to that bargain dress for years, but recently, with an abdomen that’s survived a C-section and three surgeries, I sold it on eBay, making room in my closet for more flattering silhouettes and earning me enough for a few co-payments.
Ways to Act