Editor's Note: This story has been updated with the passage of the American Health Care Act in the House.
CLEVELAND — Erin Potter doesn’t remember much of those early years when she was sick with leukemia for the first time. She was 3 years old when she was first diagnosed, though she does remember being in the hospital a lot, sometimes for months.
She’s 13 years old now, rambunctious when around her three sisters and parents in their old suburban house, but not really comfortable with being the center of attention. When asked about her 10 years fighting leukemia, Erin usually shrugs and says that’s the way it is, but she does have an ironic sense of humor.
“My mom one time told me that some of the country thinks she gave birth to an uninsurable baby,” she says with a wink and smile.
Erin’s life story is the story of Obamacare.
Before the Affordable Care Act was passed in 2010, she faced having her health care cut off because of a lifetime cap on the amount of treatment she could receive in her family’s insurance policy. After Obamacare, caps on coverage or charging people with pre-existing conditions more money was outlawed. Erin might have a difficult time getting treatment for her leukemia because House Republicans passed the American Health Care Act on Thursday, which will allow for caps on coverage and discrimination against pre-exiting conditions again.
Erin’s parents, Kevin and Jeni, were in their late twenties when their daughter was diagnosed with leukemia. After the shock of the diagnosis wore off slightly, they started looking at their health insurance to find out what was covered and what wasn’t. They had taken out a policy through Jeni’s work as an elementary school teacher in a public school district, with a $1 million lifetime cap for any individual covered.
Erin’s first treatment cost more than $250,000, due mostly to a long hospital stay.
Guidance people warned that any further complications from her illness could easily drive them over the cap. Bone-marrow transplants can easily hit $500,000, they were told, and some weekly injections to get the blood levels more normal can cost $20,000 a week over nine months. Not to mention the cost of more hospital stays.
“We knew we were covered for the time being, but Kevin and I started talking about what we should do if we hit the cap,” Jeni says. “The children’s hospital said we could get charity care if we quit our jobs and sold our house. We talked about possibly getting a divorce with me getting custody of the children and maybe getting Medicaid. We even looked into moving to Toronto, Canada, because their coverage did not have pre-existing conditions or lifetime caps.”
Both Jeni and Kevin were employed, homeowners, good parents, with insurance. Before Obamacare, even that wasn’t enough. It came just in time.
In 2011, Erin needed a bone-marrow transplant, and then another one in 2012. Her body rejected the second transplant somewhat when her immune system attacked the marrow transplant cells. (That’s where the $20,000-per-week injections come in.)
Erin is better these days, having re-learned how to walk better after her first rejection, and her body adjusting to new stem cells produced in her bones. The Potters figure the total cost of 10 years of treatment for their daughter has cost about $5 million.
Rick Lofgren, president of the Children’s Organ Transplant Association since 1986, remembers what his organization was like before Obamacare.
“Instead of including these people in coverage they could pay for, we made them almost go begging so their kids could get life-saving treatment,” Lofgren says. “It’s a big difference. Used to be we’d have to raise $500,000 to save a kid’s life due to these insurance caps. Now we might have to help them because they have a $10,000 deductible on their plan they are having trouble with. Big difference.”
A 2009 study by Price Waterhouse Cooper found that 55 percent of individuals (or 91 million people) in the U.S. with employer provided health care had lifetime cap limits (between $1 and $5 million) in the plans. A 2012 study by the Department of Health and Human Services found that Obamacare eliminated caps for 105 million people.
As more Americans lost insurance through their jobs, caps were snuck into plans. In 1979, 97 percent of the employed people in the United States got their coverage from their employer. By 2011, that number had dropped to 59.5 percent. What this meant was that more and more people were buying insurance individually, and insurance companies were trying to save money in payouts by hiding caps in the coverage. Eventually, these caps even became standard in employer sponsored health care like Jeni Potter had through her school district.
The Potter family actually met President Obama in Ohio during his 2012 campaign, and he mentioned their story during his victory speech in Chicago, on Nov. 7, 2012.
“And I saw just the other day, in Mentor, Ohio, where a father told the story of his 8-year-old daughter, whose long battle with leukemia nearly cost their family everything had it not been for health care reform passing just a few months before the insurance company was about to stop paying for her care,” Obama said.
Five years later, it’s not a complete happy ending. As Congress contemplates the repeal and replace of the Affordable Care Act, one change under consideration is to allow states to set their rules for health insurance companies. It means states might be able to allow the insurance companies to re-instate their caps, either lifetime or annually. For example, a bill considered in March would have likely limited people with pre-existing conditions to $75,000 worth of coverage annually, according to health care expert Timothy Jost.
Part of the AHCA lets states get waivers on health care standards if by doing so, they “advance another benefit to the public interest in the state.”
“The most plausible scenario for the changes to pre-existing conditions and lifetime caps to take place is if each state sets their own benefit requirements,” says Matthew Fiedler of the Brookings Institution. “That could include those changes, but it might be difficult to do with some employers having employees in different states and not having federal standards. But the House of Representatives might find a way to make lifetime caps more easily to get into polices to appease the conservatives on this.”
Jeni is livid that her family might be facing this again.
“My husband and I both work hard and raise our children well, and have always tried to be a positive influence in our community and for the economy,” she says. “People are always complaining about other people needing help, but in this case, we didn’t need that help. We pay our health care bills, and now they are thinking about denying the coverage for our daughter.”
Kevin and Jeni are preparing for the worst. Jeni has left the teaching profession and is taking classes in nursing care. Kevin decided to run for Kirtland City Council in 2015 and won. They have separated Erin’s health care coverage from the rest of the family (parents; Annie, 17; Mary, 6; Mae, 2) so they’ll perhaps deal with any challenges they might have to make under that plan by itself.
“If they put the pre-existing conditions or caps back in, we could be treated as if Congress and the president have decided we don’t count.”