As Republican-led efforts to dismantle the Affordable Care Act [ACA] continue, living with a chronic illness has become increasingly difficult. While some may still have a solid health insurance plan through their employer, that plan is tied to employment and still includes deductibles.
What happens when an employment contract ends or a job is lost?
That is the situation Laura Wright faced, and what has inspired her to become an activist on the health care scene, pushing back on members of Congress who continue to vote to limit coverage and tear down the ACA.
“My job ended,” said Wright. “The question was then: How do I pay for health insurance?”
“My family had to check in. Not everybody has the ability to have a family check in and pay for the COBRA for you,” she explained. “So, if I had to start insurance again and I had a high-deductible again, starting over in the middle of the year means I need another $6,000 since the medication I need costs more than $5,000. So, usually I meet my deductible by one month of meds, and then I’m good to go for the year. But paying that twice a year is not doable.”
Trying To Afford A Chronic Illness
Wright, who is from Decorah, Iowa, has rheumatoid arthritis, which slowly deforms bone structures in joints, allowing scar tissue to build up. Even when treated, it can cause chronic pain, swelling and limited joint mobility. If left untreated, it can cause crippling, rendering joints virtually useless and locked.
Wright has battled this disease for years and constantly worries the health care she requires, which costs more and more over time, may eventually become unaffordable and unattainable.
“If I can’t get my medication, I’ll slowly become a cripple, and I can’t walk. And if I can’t walk, I can’t work,” she said.
Wright will meet with U.S. Rep. Abby Finkenauer next week. After she shared her story with Finkenhauer’s staff, they took her contact information to set up a meeting with the 1st District congresswoman. Wright recently tried to meet with Republican Sen. Joni Ernst, but that effort was not met with the same enthusiasm.
“The first, and biggest, letdown would be Joni Ernst voting three times to end the ACA,” Wright said. “So, that was at least my backup plan. COBRA only lasts a certain number of months. And I thought, you know what, I don’t know how long I’m unemployed, my family can help out, but at least the ACA will be there if we run out of money.”
Wright was not upset members of Congress wanted to make changes to the ACA, but that they would vote to undo policies leaving a void in coverage for those who rely on government care.
“The idea that she would do that without anything in its place, is astounding. It’s like the backup net for the backup net. So, that has to end,” Wright said.
Wright is not alone.
The uncertainty of Republican health care policy is a heavy burden on the minds of millions with pre-existing conditions and those who struggle to afford private care.
“I got a job in January that helped me through that, and I’ve been back on that plan and it’s going solid right now,” Wright said. “But the fear and the thought of not having it, or that not everyone has a family to support them like that, it’s just unconscionable, quite frankly.”
A Disease In Body And Government
Wright has pushed back against Ernst and other officials who attack the ACA without having an option in place to replace it. Just a few weeks ago, she traveled to Washington, D.C., for a hearing on prescription drug prices, speaking outside with people fighting for affordable insulin.
But when she returned to Iowa, Wright still was frustrated with the lack of options for people who lose their insurance, and the inadequate responses from federal legislators.
“Even with some of these bills that are about transparency; what does this capitalist system look like?” she questioned. “I’m not asking for something free, although that would be great, too. I’m not asking for something free, but is has to be reasonable. If someone loses their insurance in a year and they have to start all over again, they should not be looking at $12,000 by paying a deductible two times.”
For those who do not have a chronic illness, Wright said, it can be difficult to understand how challenging it is to receive quality health care coverage.
“I think people, in general, underestimate the effect that chronic illness has on you,” she said. “How difficult it is to find a specialty fund, find out how to get that medication, and jump through different hoops that other people don’t even see because chronic illness makes you use the health care system in a different way.”
COBRA has taken heat for being too expensive for fallback health insurance. This page, where a health insurance expert answers frequently asked questions about COBRA, gives a look inside that struggle.
Question five asks what COBRA covers. The expert responds that it covers everything your previous health insurance plan would have covered, and that, “the beauty about this plan is that nothing about your policy changes except the price.”
It’s important to note that the price doesn’t go down. Rather, this emergency health care plan actually raises prices further than what one paid through their employer. Having a chronic illness that limits ability to work, and having to sign up for COBRA can quickly lead to a situation that is financially draining.
“It’s a long game to be played every day to make sure that you’re going to be healthy in 10 years,” Wright said. “I wish that my legislators understood that and valued it more than they value the capitalism.”
The response to these problems from lawmakers is inconsistent, Wright said. Some take the time to listen and, at least, seem like they care. Others don’t even offer that much.
“Just the fact that Abby Finkenhauer had me back to hear my story personally, not just her staff, that says a lot,” Wright said. “I wish that Joni Ernst would do that same, but that’s clearly not something that is a high priority for them.”
By Josh Cook