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For This Family of Teen Leukemia Survivor, Vote to Repeal Obamacare Is Personal: ‘We Started Getting Really Scared’

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Erin Potter (far right) with sisters Mary (middle) and Annie in 2012.
Courtesy Jeni Potter.

In 2007 when Erin Potter was three, she was diagnosed with leukemia. The treatments were so costly that Erin faced the possibility of losing her health insurance, due to coming close to meeting a lifetime cap on coverage that was routine back then.

But when the Affordable Care Act (also known as Obamacare) passed in 2010, caps on lifetime coverage and the ability to exclude people with pre-existing conditions were banned.

So when Erin’s leukemia returned in February of 2011, and she relapsed again in March 2012, Erin could get her life-saving (and extremely costly)  treatments. This included bone marrow transplants, chemotherapy and radiation,  which went millions of dollars beyond her original lifetime cap of $1 million.

Erin Potter, with an assist from her sister Annie, in 2011.
Jeni Potter

“That was crucial,” says her father, Kevin, who works in sales and is a member of the city council in Kirtland, Ohio.

Now, Erin’s parents are fearful their now 13-year-old daughter soon won’t be able to get future treatments, because Republicans in Congress voted Thursday to repeal Obamacare and replace it with provisions that could cap coverage for people even if they get health insurance. It also allows, once again, for insurers to discriminate against people with a vast array of pre-existing conditions—from cancer to depression to pregnancy.

Thursday’s House vote “came up on my phone as an alert and I got sick to my stomach and I have been sick to my stomach ever since,” says Kevin, 39. “My daughter is tagged once again as someone who is not insurable. She won’t be able to have health insurance.”

Erin, who has been healthy since her last relapse in 2012,  just wants to enjoy seventh grade, playing soccer and developing her love of acting.

As the House vote loomed last night,  “Erin looked at us and said, ‘Am I going to have coverage?'” says her mother, Jeni, 37, a former elementary school teacher who now works full-time in a hospital Emergency Room as she completes her nursing degree.  “She wants to feel safe.”

“This just doesn’t seem right,” says Jeni, “She’s fought her entire life to live.”

The family, who gets their health insurance through Kevin’s work, has talked about moving to Toronto, Canada, because the care there does not exclude pre-existing conditions or lifetime caps.

Says Jeni:  “We started getting really scared. We don’t want to go anywhere and we feel we shouldn’t have to leave.”

But, as Kevin says:  “My child’s life and health comes first.”

“There is no basis behind (the vote),” he says. “This should not be a partisan issue. That is why I am so proud of of my congressman, Dave Joyce (one of 20 Republicans who voted no). He rose above the silliness.”

Jeni’s reaction to Thursday’s vote “is utter disbelief.”

“I can not believe anyone can stand there and say this is the best for anybody,” she says. “It won’t take care of people like Erin and there are a lot of kids and adults out there who have pre-existing conditions and you are kicking them out when you vote for this.”

The bill would allow insurers to charge people significantly more if someone has a pre-existing condition including heart disease, cancer, diabetes or arthritis – possibly requiring someone to pay thousands of dollars extra every year to be insured.

It will cut $800 billion in spending on Medicaid, leaving an estimated 14 million fewer people covered by that program, “even as it delivers an enormous tax cut to the rich,” according to The Washington Post .

An estimated 24 million people will lost their health insurance coverage by 2026, according to the non-partisan Congressional Budget Office.

Jeni, Erin’s mom, estimates the total cost of her daughter’s care has been over $5 million.

When Erin was first diagnosed, she was covered by a policy through Jeni’s work as an elementary school teacher. With a limit of $1 million for treatment, Jeni says she doesn’t know what they would have done if caps were still in place when Erin relapsed in 2011.

She needed a bone-marrow transplant then, and another in 2012. Each, says Jeni, cost $250,000.

After Erin’s second transplant, she developed a side effect known as Chronic Graft Versus Host Disease (GvHD), a chronic condition that may occur after a transplant. To combat that, Erin required twice-weekly treatments that cost $20,000 a week.

“The chances of GvHD flaring up again are pretty high,” says Jeni.  “Lots of things can trigger it and cause her to need that therapy. She will easily hit a lifetime cap and if her treatment is up, then what do we do?”

Erin Potter (far left) and her sisters, Christmas 2016.
Jeni Potter

The family is hopeful the senate will reject this bill. Erin’s 17-year-old sister, Annie, has been calling, emailing and contacting her congressmen and senators about Erin’s healthcare coverage.

“Her sister has fought through three battles of leukemia,” says Jeni, “so why does she have to battle for proper health care coverage.”

In the meantime, the family has looked online for houses to rent in Canada and marked the ones they like. “It made Erin feel better,” says Jeni, “to know we have a plan B if we need it.”