Money Bag/ by Julianna Paradisi/ all rights reserved

Costly Care

I was an oncology infusion nurse in a hospital-based ambulatory center for a number of years, many of them before the Affordable Care Act (ACA) was signed into law in 2010. Besides administering chemotherapy and blood products, I infused medications to patients with sickle cell anemia as well as chronic autoimmune disorders such as rheumatoid arthritis, lupus, and Crohn’s disease.

The common denominator among these diseases is the high cost of the medications used to treat them, at the time ranging from $3,000 to $10,000 per treatment. I know, because patients told me, their nurse.

I also know because uninsured patients were required to fill out paperwork declaring their lack of income, prior to receiving authorization for charitable treatment. If they were sick enough, they were admitted to the hospital for initial treatment, at more expense than outpatient infusion, until the paperwork was completed and approved.

These were particularly difficult times to be an infusion nurse.

Some patients lost their jobs during cancer treatment, because the cost of their cancer care increased their employer’s insurance coverage risk pool rates.

Other patients worked night shift before arriving, sleepless, for chemotherapy as soon as we opened in the morning. They couldn’t afford to lose their health care benefits, nor their income while getting treatment.

There was a homeless man receiving chemotherapy through charitable care, which did not cover the antiemetic ondansetron (Zofran). He was provided with prochlorperazine (Compazine) instead, until I took issue over it with our manager, who somehow fixed the situation for the patient, and for others like him who followed.

Prior Authorization and the Myth of Death Panels

One of many unscrupulous arguments used against the ACA in the years leading up to its passage was the notion that the the law empowered “death panels,” which would decide who can have what treatment. This was a myth designed to prey on Americans’ fears, a deliberate misinterpretation of a proposed ACA provision that would have reimbursed physicians for time spent talking to patients about their end-of-life preferences.

But the myth reflected a reality that existed before and after passage of the ACA. Such a scenario, in which decisions are made about who receives what care, has long existed. It’s called “preauthorization.” In the outpatient setting, insurance carriers have always decided what treatments and procedures they will cover, regardless of what a physician orders. The closest thing to a death panel I witnessed in my clinical work was cancer patients deciding for themselves to forego another round of chemotherapy or an off-label procedure because the out-of-pocket costs would deplete their savings, robbing their surviving family of college tuition or financial stability.

Speaking from Experience

These patient scenarios were particularly poignant for me because I am a breast cancer survivor. I was 40 years old and a single mom when I was diagnosed. Since I had a healthy lifestyle and no family history of cancer, a nurse coworker quipped, “I’m going to eat, drink, and be merry, because being a vegetarian and a runner didn’t do you much good.” She rightly pointed out that youth and a healthy lifestyle aren’t much of an insurance plan.
Although I had insurance through my employer, a 20 percent copay on treatment costing tens of thousands of dollars is still a lot of money on a single income with a mortgage to pay. In comparison to some of my patients, however, I was lucky.

Patients with Preexisting Conditions: Return to the Bad Old Days?

Breast cancer continued to cast shade on my life as a preexisting condition until the Affordable Care Act was signed into law. Suddenly, along with millions of other Americans, I was free to change jobs without losing health insurance coverage. Insurance benefits started after 30 days of employment, instead of in six months. There were no lifetime caps on treatment, if the breast cancer returned. Many of these patient protections may go away if the ACA is repealed, despite promises to the contrary.

I concede that the Affordable Care Act is poorly named, inadvertently contributing to its being in the crosshairs of the new administration. (Allowing the nickname Obamacare to become acceptable usage didn’t help its case either.) The law’s also confusing to fully understand: some states have their own insurance marketplace and some utilize the federal government’s website. Some have adopted the ACA’s expansion of Medicaid eligibility; others have chosen not to do so. And there are countless other provisions affecting access to care or designed to improve quality of care.

Part of my current role as an oncology nurse navigator is referring uninsured patients to appropriate resources. Sometimes, patients purchasing insurance find the ACA is affordable, because after paying the initial premium, they have no further deductibles. Compare this to many employer-provided policies requiring out of pocket maximums around $5,000 for a family, and the ACA is a very good deal. But I’ve also received reports of ACA monthly family rates of over $500 a month, with large out-of-pocket deductibles. The ACA is affordable for people of lower income levels, but not always so much for middle class families above a certain income.

Problems also arise when insurers pull out of the marketplace, suddenly leaving their customers, my patients, without coverage. Getting them signed up with another insurer sometimes means they have to change doctors, a cause of dissatisfaction for any patient, but particularly distressing to those in the midst of cancer treatment.

It’s Complicated, In Other Words

But despite its drawbacks, most patients I know receiving treatment through ACA coverage are happy with it. They see the billing statements, and realize how very expensive cancer treatment is in the United States.

So I view the ACA as a very good start. It laid the foundation by declaring that health care is a human right, at least for our citizens. It has shed a great deal more light on the high (and rising) cost of American health care, as well as on issues of health care quality. It has provided health care for 20 million previously uninsured men, women, and children. Like all good ideas, its implementation has raised questions, and exposed problems. It is a cornerstone, a work in progress, one that I hope Americans will choose to shape and influence for generations to come.