(CNN) — Valerie Daniel is nervous about the GOP health care bills making their way through Congress.
The 33-year-old Georgia resident doesn’t currently get her health insurance through the exchanges, although she has in the past, nor is she on Medicaid. Both could be impacted by the Republican legislation proposed as a replacement to Obamacare.
Still, she is watching that legislation closely because she, like 117 million Americans, has a chronic condition. It has no cure and requires expensive care. She worries about whether her husband’s job will still come with benefits and whether they’ll be able to avoid penalties by maintaining consistent coverage.
To Daniel, the health care debate is not political, it’s personal.
Daniel has Crohn’s disease, which is inflammation of her GI tract. Sometimes she feels fine and can go about her day as if she is well. Other times, the condition leaves her in such pain and with so little energy, she is confined to bed for days at a time. She’s had bouts when she can’t swallow. Sometimes her body rejects all food. Once, when she was in college, she spent an entire weekend on the bathroom floor, too sick to eat, drink or move, she said.
It’s been rough, particularly since she is a busy mother with two young children who demand a lot of her time.
“It’s been really hard, especially this year, on my kids,” Daniel said. “They can’t comprehend what’s really going on with me. They just know that I’m sick. Thankfully, they’re really great kids, and I have a lot of friends and a lot of family who have volunteered to help.”
She said the help comes in handy when she gets her treatments. Her doctors have had her try nearly every medication that’s out there. She’s also had to have surgery to remove part of her colon. None of it worked permanently, so her doctors put her on Remicade. The drug comes in the form of an infusion that she must get at a hospital that’s a 40-minute drive away. She gets it every few weeks. Without insurance, the drug would cost about $20,000 a year.
The good news is, it seems to be working.
“This type of medicine is a lifetime commitment,” she said. That means she can’t afford to go without insurance if she wants to stay well.
Her husband, Justin, rarely gets sick, she said, so he might be able to get away without insurance, but her daughter may also have an autoimmune disease, so the family has to keep its coverage, which they get through his work.
The absolute need for insurance is something that keeps Daniel focused on what is going on with the GOP health care bill.
“What are they going to do for people like me who have chronic illness?” she asked. “There is a little bit of nervousness here.”
The current GOP bill does not bring health care back to the way it was before Obamacare.
Before the Affordable Care Act, if you shopped for a plan on the individual market, companies often wouldn’t sell a plan to someone who had a chronic or pre-existing condition. There were also lifetime caps on how much a company would spend on your care. With an expensive drug like Remicade, Daniel could have easily maxed out a policy in the old system.
Obamacare eliminated lifetime caps and made it so insurance companies couldn’t discriminate against you if you had a pre-existing condition. The current bills do not change either issue, but the bills do incentivize people to have continuous coverage. And large employers would no longer be required to offer affordable insurance to their employees, like they do now.
That means if the bills become law and her husband’s company decides to drop its benefits, Daniel could lose her insurance. And although the family has done everything in its power to keep coverage, she said, she could easily see when there could be a gap.
That nearly happened a few years ago, when her husband lost his job. For the three months he was out of work, the family went on COBRA, which is not subsidized. It cost $900 a month. It was such a steep expense, Daniel said, they had to ask family members to help them cover their bills. Without generous family, they could have taken their chances and skipped insurance coverage to keep afloat financially.
But skipping coverage would be an even tougher decision if they faced another job loss. With the proposed GOP health care plan in place, they could face a 30% penalty if they bought a plan on the individual market for the rest of that year.
Daniel said she hopes, whatever Obamacare replacement goes into law, that she and others with chronic conditions will be OK. Until then, she’ll be thinking constantly about what could happen to her insurance.
“I’m nervous not knowing the future,” Daniel said. “You never know how much you’re going to end up with that you’re responsible for. You never know how bad it’s going to get.”