The Affordable Care Act is still law. Signing up for health insurance is still hard

The call from the emergency department came in just as my urology clinic was winding down. “I’ve got a young guy here with a testicular mass; it doesn’t look good,” said the physician on the other end of the line.

I walked down to the department’s overflow section and found Jason sitting up on a gurney. On the chair next to him hung the freshly pressed shirt he had exchanged for the standard-issue green and beige hospital gown. Jason was worried — over the last nine months, his left testicle had been getting progressively larger, and today it was causing him severe pain. I examined him and said we would need to run some more tests and imaging studies; I was worried, too.

I asked Jason why he hadn’t gone to see a doctor sooner. “I wanted to,” he told me, “but I don’t have insurance.” He worked in small restaurants that did not offer health insurance benefits. He had tried to sign up over the past year and a half but never finished the process. Because he was working two jobs, his shifts overlapped with the hours the health exchange enrollment centers were open. When he was able to get there, the lines to sign up for insurance were often too long. Then, when he finally finished filling out his paperwork, he unexpectedly had to move. But changing his address required more waiting in line.

Jason was healthy, young, and motivated, not unlike most uninsured adults in the U.S. As it turns out, most of America’s uninsured come from low-income families with at least one working adult. In fact, this age group has historically been the least likely to have health care coverage. Before the Affordable Care Act, 37 percent of people between the ages of 19 and 25 and 25 percent of those aged 26 to 35 did not have health insurance. Since it became law, an estimated 2.6 million young people gained insurance, though the exact impact of the legislation on these age groups remains difficult to quantify.

Jason told me he had been hesitant to even inquire about getting covered because he thought that health insurance was too expensive. His mother and younger siblings depended on his income, and he needed to make sure that buying insurance would not harm the family. Had he heard about subsidies for health insurance, I asked? He hadn’t. Like most Americans, Jason didn’t know that 43 percent of uninsured non-elderly adults qualified for financial assistance for health care coverage. Information about health insurance was difficult to track down, he said.

The Affordable Care Act is still law, and will be until Congress agrees on something to replace it. Yet many Americans report increasing difficulty locating ACA-related material, an issue made worse by the fact that some information about the ACA has been removed from government websites.

That only compounds the public’s confusion about health insurance. A recent poll revealed that 35 percent of Americans were not aware that the Affordable Care Act and Obamacare are one and the same thing, while 45 percent did not know that repealing Obamacare would also mean repealing the ACA.

By the middle of the night, Jason’s test results confirmed my worst suspicion. His blood tests showed elevated cancer markers, and imaging revealed that the cancer had possibly spread from his testicle to other organs. There is an old adage in urology — “never let the sun set on a testis mass.” So that morning I took Jason to the operating room. Microscopic examination of the tumor I removed confirmed testicular cancer.

On the cancer spectrum, testicular tumors tend to have better prognoses than most other cancers. The five-year survival for all testicular cancers is above 95 percent; even when the disease has spread beyond the testicle, survival is as high as 75 percent. In other words, Jason’s disease was fatal if left untreated but very curable with standard chemotherapy.

A social worker immediately began to work with Jason to apply for emergency Medicaid to cover his treatment. An oncologist scheduled him to start the necessary treatments. And a letter was sent to the hospital president asking to approve Jason’s treatment despite his lack of insurance — a request that was granted within minutes.

Many hospitals, driven by their mission statements and nonprofit status, choose to treat uninsured patients. But that comes at a cost. For decades, hospitals have been struggling to manage the burden of treating patients without compensation. The ACA was starting to reverse that trend. A 2014 report in the Journal of the American Medical Association revealed that hospitals in states that participated in ACA-aided Medicaid expansion were finally beginning to climb out of deep financial holes.

Most hospitals operate on margins well below 10 percent (compared to Apple’s 28 percent). That provides money to reinvest in technology, to update facilities, and to simply stay open. By helping these hospitals stay afloat, Medicaid expansion and increased insurance access was protecting not only individuals needing treatment but entire hospital systems and the communities they serve.

It’s unclear how long the ACA will last, given the GOP’s determination to see it repealed. But what would its replacement look like? The Congressional Budget Office has just released its assessment of the Republican’s American Health Care Act, which recently squeaked through the House of Representatives. The CBO estimates that 14 million fewer people would be insured by next year, and 23 million fewer people would be insured by 2026 if this bill became law. At the same time, those with preexisting conditions would be subject to a 30 percent surcharge if they were to lose their coverage for 63 days or more. Because coverage can often be unpredictable, lapses in coverage are not rare: Almost a third of those under 65 experienced a lapse of coverage of one month or longer in 2013. In other words, insurance can easily become unaffordable for America’s most vulnerable: those with a complex medical history, who have a temporary loss of employment, or who do not have the financial safety net to get them through tough times.

Repealing the ACA without replacing it would be devastating as well, leading to a loss of insurance for 23 million Americans. It is equally worrisome for hospitals. The American Hospital Association has warned that repealing the ACA could cost hospitals $165 billion by the middle of the next decade, throwing an already fragile hospital system into chaos. The domino effects would mean that even insured patients might find their access to care effectively disappear as their local hospitals are forced to shut their doors.

The ACA, of course, isn’t perfect. More work remains to be done for people like Jason who, for various reasons, have not been able to sign up for insurance. For those nearly 30 million Americans, a lack of insurance is not a statistic but a reality. It represents a lack of check-ups, unfilled prescriptions, and missed diagnoses. For some it is intense financial anxiety layered on top of learning that they have cancer or other diseases.

Regardless of party affiliation or stance on the ACA, now is the time for transparency and increased access to information about health care and health insurance. Politicians should be clear about the effects their decisions may have on all of us. And we should hold them accountable for their decisions.

Daniel Marchalik, MD, is a urologist at MedStar Washington Hospital Center. He writes a monthly humanities column for the Lancet and directs the Literature and Medicine Track at the Georgetown University School of Medicine. All views expressed are his own and do not represent those of MedStar Health.