Julienne Edwards was 26, five days away from taking the California bar exam and 14 months away from her wedding, when she felt a twinge in her stomach. The throbbing grew sharper, like a knife puncturing her gut, so Edwards went to the hospital to get help.
It was the beginning of a nightmare.
Edwards, who was otherwise healthy, was diagnosed with stage 4 colon cancer. Within four days of her hospital visit, she was on an operating table for emergency surgery to remove a tumor blocking her lower intestines and part of her colon. The surgeons also discovered the cancer had spread to her ovaries, so they removed them too. She left the hospital that day unable to have children with her own eggs.
Instead of starting her family and moving to LA for the dream job she had lined up at an agency that represents film composers, she found herself writing her will. She and her fiancé fast-tracked their wedding date by a year, aware that their time together might be cut short.
“Cancer has a way of putting your priorities through the spin cycle,” Edwards said from her home in Baltimore, where she’s living to be close to family and her doctors at Johns Hopkins.
The way cancer interrupted Edwards’s plans is more the rule than the exception. A diagnosis often means a complete life upheaval and, in America, stratospheric health care costs, compounded by employment pauses or even job losses.
The Affordable Care Act provided some much-needed inoculation from the financial stress and hardship. Many provisions in the 1,300-page law seemed to be designed for cancer patients like Edwards. She was able to stay on her parents’ insurance plan at first and then purchase affordable coverage on the individual marketplace, which covered the cost of her treatment.
But many of these provisions are now on the chopping block under Republican health reform plans. The 1.6 million people who will be diagnosed with cancer in America this year, as well as the additional 15.5 million who have a history of the disease, are in particular jeopardy: They’re uncertain whether they’ll be able to get insurance or afford their medical bills if the law is dismantled.
Cancer is hugely expensive to treat. Obamacare provided some protection for patients against those costs.
Cancer bills have been a leading cause of personal bankruptcy in the US, and a third of survivors report ongoing cancer-related financial problems — a common reason many skipped health care they may have needed. According to a 2013 study in the American Journal of Clinical Oncology, from 2008 to 2010 the annual economic burden of the illness among recently diagnosed cancer survivors was more than $16,000 per person.
The research also suggests that up to 85 percent of cancer patients stop working while getting treatment, with absences that range from 45 days to six months.
Edwards experienced that disruption. She couldn’t go to California to take the job she’d been offered because of her surgery, and the demands of her treatment delayed her bar exam, and left her unable to work full time.
Since her diagnosis two years ago, she’s gone through one course of chemotherapy, and has cobbled together part-time work, even managing to pass the Maryland bar in July. But in November, she learned that the cancer had come back.
Now she’s waiting to find out what her next treatment options will be, with a lot of time to think about the future. And her mind often wanders to worrying about one thing: the cost of her medical care.
For now, a number of Obamacare provisions have protected her from additional financial hardship.
Because Edwards was 26 when she learned she had cancer, her surgery and initial treatments were covered under the Affordable Care Act’s dependent coverage provision, which allows young people to stay on their parents’ insurance plans until they’re 26. (Trump has said he favors this rule, and Republican replacement plans do too.)
After she aged off her parents’ plan last January, she was able to take advantage of the law again to buy an insurance plan at $450 per month from the ACA marketplace. This is because of another Obamacare provision called guaranteed issue, which says people with preexisting conditions like cancer can’t be denied coverage.
The law required insurance companies to remove lifetime caps on spending, which means that people like Edwards can get the treatments they need throughout their lives without hitting a cost ceiling. Her chemotherapy was considered an “essential health benefit” under the law, so she doesn’t have copays for it.
The ACA also prevented insurance companies from charging different premiums based on a history of cancer (they’re now set based on age ranges), so that helped make Edwards’s insurance more affordable.
Obamacare isn’t perfect: Edwards still has hefty $350 copays every time she needs a CT scan, and some of her pharmaceuticals aren’t covered.
But prior to the ACA, cancer patients were virtually uninsurable if they had to buy plans on the individual market.
“Millions of cancer patients found themselves unable to purchase insurance because of their preexisting condition,” said J. Leonard Lichtenfeld, the deputy chief medical officer of the American Cancer Society, in a recent testimony at the House of Representatives. “Even those who were able to obtain coverage often found that annual or lifetime limits severely curtailed their coverage, leaving them vulnerable to enormous costs.” Some patients had their insurance policies revoked after being diagnosed.
Had the ACA not been signed into law, Edwards might be uninsured and saddled with $200,000 in medical debt from 2015 alone, on top of the student debt she’s still carrying from law school. She’d also have to pay $48,000 for every course of chemotherapy. In other words, the cancer would not only challenge her health; it would cripple her financially.
How the Republican plans to dismantle Obamacare could make life tougher for cancer patients
It has long been a truism of American health care that a small group of patients cost the most money. The top 1 percent of health care spenders account for nearly a quarter of overall health care spending, and the top 20 percent are responsible for 82 percent of the total.
It is this 20 percent that are the most challenging group for any insurance coverage expansion, because they have bills that are well beyond the financial reach of most people — and the government needs to decide how much money it wants to provide as a safety net for them.
The ACA tried to address this group by essentially putting the young, old, sick, and healthy into the same risk pool through the individual mandate, which requires everybody to purchase coverage. In a country without universal health care, the law also mandated that insurance companies no longer discriminate against people who have fallen ill or who are living with a chronic disease (as cancer often is), and it made health insurance and some of the most costly cancer treatments accessible and affordable.
Republican health reform plans aim to strip away the individual mandate. They also have weaker protections for people with preexisting conditions, and would not require insurers to offer as generous benefit packages as the ACA — something that could hit patients with costly treatments and medications especially hard.
House Speaker Paul Ryan’s plan would maintain the ACA’s ban on lifetime caps — but Health and Human Services Secretary Tom Price’s plan would eliminate the provision. Under Price’s proposal, cancer patients would once again be subject to paying hundreds of thousands of dollars for their medical bills after hitting a spending limit.
If the Republicans go with Price’s plan, this will have life and death implications for cancer patients. “My worry is if [the Republicans] remove the lifetime caps again, I might be able to afford chemotherapy rounds one, two, and three,” Edwards said, “but when they get around to making that immunotherapy [that could eventually cure the cancer], I might not be able to afford it or the insurance won’t cover it.”
The trouble with “continuous coverage” and high-risk pools for cancer patients
Republicans (including Ryan, Price, and Senate Finance Chair Orrin Hatch) have also championed an idea called continuous coverage to get around the health law’s individual mandate. In sum, it would require insurance companies to not discriminate against patients based on their health status — so long as those patients have managed to maintain health insurance continuously, without a lapse.
The idea sounds okay in theory: If everybody maintains coverage all the time, the insurance pool is viable because you have sick people and healthy people in the system.
The reality is that many people with chronic diseases such as cancer may not be able to meet that requirement. Like Edwards, they’ve had to leave their jobs, or they have interruptions in their employment during cancer treatments. Breaks in employment could mean breaks in insurance, and according to the Republican health reform plans, those gaps could allow insurers to deny people coverage or charge them more — which is why groups such as the American Cancer Society oppose continuous coverage.
For those who fall through the cracks, both Price and Ryan favor reestablishing high-risk pools, state insurance programs for people with serious illnesses who can't get coverage on the marketplace. Obamacare killed high-risk pools, which were in place in 35 states plus Washington, DC, since the law banned denying people insurance based on a preexisting condition.
And they were no panacea for patients. Some state high-risk pools had long waiting lists that left people dying while they waited to get covered. They charged premiums that were up to 250 percent higher. And most charged high deductibles and denied people coverage for a preexisting condition for up to a year after enrollment.
High-risk pools also had coverage limits like annual and lifetime caps. In many cases, they essentially punished the people they were designed to help. “[The return of high-risk pools] is a walk into the twilight zone for people who are in need of coverage who fall into this gap,” said John McDonough, a Harvard professor and Obamacare expert. “A lot of people with cancer are going through one of the toughest experiences in their lives, and if Republicans get their way, it’ll get a lot tougher.”
Avik Roy, an ACA thinker and president of the Foundation for Research on Equal Opportunity think tank, pointed out that we’ll have to wait on the precise language in a new Republican bill to see how high-risk pools are structured, and whether they’ll be different from the old ones. He also noted that premiums have gone up under Obamacare, and Republicans could implement reforms that make health insurance even more affordable for cancer patients. “We just don’t know yet,” he added.
Right now the fate of the Affordable Care Act is very much an open question. The law has never been more popular. And it seems repealing the ACA and taking health insurance away from people is shaping up to be a much trickier proposition politically than Republicans bargained for.
Cancer patients like Edwards are waiting anxiously on the Republicans’ next moves. She has been carefully tracking the news and legislation on health reform and thinking about her plan B. If the law is dismantled and she loses her coverage, she’ll try to raise funds to pay for her medical bills.
“My entire family would start a Kickstarter before they let me go without treatment,” she says. “But it’s very strange that we are a society that lauds cancer survivors for their bravery and is more than happy to share in a Kickstarter for somebody’s medical care” but won’t support health insurance for all. “I can’t square it in my head.”