When You Can’t Afford the Care You Need

In poverty and other misfortunes of life, true friends are a sure refuge. ~ Aristotle

Today, the term “terminal illness” is something of a misnomer for many once fatal illnesses. While it’s true that many people with life-limiting illnesses like cancer and heart disease are what might be called “terminally ill” (that is, unlikely to survive more than a few months), far more — millions, in fact — are living with a diagnosis that would have meant quick and certain death even 20 years ago. What’s more, new medicines and technologies that can extend the lives of those who are seriously ill are being developed all the time.

Yet, despite the great promise of pharmaceuticals and technology, there is another, darker side to this progress that most of us rarely see. That is: Millions of Americans who might benefit from these innovations can’t afford the care that might extend their lives.

Take John, for example, who has multiple myeloma, a chronic, incurable form of blood cancer. Most people with multiple myeloma relapse “on therapy” within the first 24 months. John made it past the two year benchmark, but after 30 months of therapy, his blood work showed his cancer had returned. Still, there was a bright light on the horizon. A new drug named Darzalex (daratumumab) combined with the thalidomide derivative Revlimid ((lenalidomide) had shown great promise in inducing a second remission in people with multiple myeloma. John, who was still working and had employer-sponsored health insurance, began the treatment — a weekly infusion of Darzalex for four weeks and a daily dose of Revlimid — and made an appointment to be seen by his oncologist in one month.

John responded well to the new therapy. Unfortunately, he also experienced an exacerbation of his peripheral neuropathy — an extremely painful condition brought on by his previous chemotherapy. He struggled to continue working, but when the pain in his feet was so bad he could no longer walk, he had no choice but to stop working and apply for Social Security Disability.

And that’s when the real nightmare began.

No Real Safety Net

Most of us have heard of COBRA, an acronym for the Consolidated Omnibus Budget Reconciliation Act of 1985, a law that gives employees the right to pay premiums for and keep their employer-sponsored health insurance when they lose benefits due to disability. Once upon a time, it was a lifesaver for people who had a serious illness and could no longer work — an affordable stopgap that provided ongoing insurance coverage while they waited for Social Security and Medicare to kick in. But today, it is a false promise — a “safety net” that the average worker simply can’t afford.

Case in point: John had a very generous employer-sponsored health plan. His monthly contribution was $250 plus another $400 for his spouse. His employer paid a $700 monthly premium for John’s insurance coverage, bringing the total monthly premium for John alone to $950. So even after dropping his wife’s coverage, John’s COBRA premium would be nearly $1,000 per month — completely unaffordable at a time when his co-pays and other medical expenses were reaching an all time high.

So John looked into buying insurance coverage on Healthcare.gov., the insurance marketplace created by the Affordable Care Act. It was significantly cheaper — about $550 per month. But that was the premium for a Bronze plan, which came with an annual deductible of about $6,000 a year. And though John would meet the deductible quickly, he had no idea how he would come up with it all at once given his mounting medical bills.

Meanwhile, John learned that, without insurance, the price of each of his Darzalex infusions would be almost $6,000, and the monthly cost of Revlimid would be $28,000. Their savings already wiped out, John and his wife were caught between the proverbial rock and a hard place. So they signed up for the high deductible Bronze health plan and looked to friends and family to help them make ends meet. For two hardworking, proud, independent people in their 60s, this was almost as devastating as the cancer diagnosis itself.

An All Too Common Plight

Nor is John’s case unusual. In a report from August 2018, Forbes revealed that over 250,000 American families are turning to the crowdfunding site GoFundMe each year in order to defray the cost of their medical care. And thanks to the generosity of strangers, those funding campaigns raise over $650 million every year for people like John and his wife. But even that isn’t enough to help every person in need or to prevent the financial devastation high medical costs can bring. About 25 percent of people who declare bankruptcy in the U.S. do so, at least in part, because of medical bills. And many people who die from chronic diseases do so leaving an enormous legacy of unpaid debt.

For now, John and his wife are “doing OK,” he says. His cancer is in remission, and now that he has met his health insurance deductible, his medical costs are more manageable than they were before. And in a month or so he hopes to get word that he has qualified for Social Security Disability, which will make him automatically eligible for Medicare.

“But I still worry,” John says. “What happens when this therapy stops working, and they offer me an even higher-priced drug? Even if Medicare pays for it, I still have to cover 20 percent. And 20 percent of several hundred thousand dollars…..well that’s just not in the cards for me.”

“I guess everyone has to die eventually,” he adds. “But it seems pretty damn unfair that I could die, not because there’s nothing more they can do, but because I can’t afford the care that might help me live.”

I totally agree. 

About Kathleen

Each month Kathleen Clohessy, R.N., offers a new perspective on living with a terminal illness. Kathleen comes to SevenPonds with 25 years experience as a registered nurse caring for families and children facing life-threatening illness. She began her career in the Pediatric Intensive Care Unit at Nassau County Medical Center in New York. After relocating to California, she spent 15 years as an R.N. and Assistant Nurse Manager at the Pediatric Oncology & Bone Marrow Transplant Unit at Lucille Salter Packard Children’s Hospital at Stanford. She uses her knowledge and expertise to enlighten our readers about the challenges associated with chronic illness and its effects on family relationships.