President Donald Trump's proposed 2019 budget calls for a repeal and replace of the Affordable Care Act. It seems unlikely Congress will make such a move as early as next year, but it would leave millions of Americans who rely on the healthcare coverage in a difficult position.
People with diseases that are costly to treat are on edge as they wait to see what will happen.
'I don't know what I would have done'
Charmin Currie keeps pictures of her kids and grandkids displayed on a shelf in her new apartment. But in one of the frames, on the top shelf, there's a photo of former President Barack Obama.
Obama's landmark legislation the Affordable Care Act allowed Currie to get treatment she desperately needed when she got sick last year.
"I was diagnosed last year in February with lebolular carcinoma," Currie says. " It was stage one until I had the surgery. They took out five lymph nodes in my left arm and removed half of my left breast."
The diagnosis couldn't have come at a worse time. Currie had recently lost two brothers and was struggling to cope with the death of two of her sisters.
"It was just really stressfu to be honest with you," Charmin says. "I thought I was gonna die, that was a big part [that] just always stayed in my head. "It took all my energy and kinda just killed my spirit."
It's a typical reaction to getting a cancer diagnosis.
"A cancer diagnosis is devastating at many levels. It's not just the medical aspect that we look at," says Deanna Westley, the director of a program called Embrace at Ezkenazi Health. "We look at the emotional impact, the financial impact, the spiritual impact."
Westley helps people deal with the fallout of being diagnosed with a life threatening disease. Without health insurance and a support network, she says many people don't make it through diseases like cancer.
"The cancer is gone and without that insurance, I don't what I would have done or where I would be at this point."
That's why Currie is lucky.
Long before her diagnosis she realized she was eligible for HIP 2.0, Indiana's Medicaid expansion, so she signed up even though she wasn't sick.
She didn't know the decision would change her life.
"I don't know where I would be right now, I don't know if I would be healed," Currie says. "The cancer is gone [and] without that insurance, I don't what I would have done or where I would be at this point."
More Cancer Patients Have Insurance Post-ACA
Westley says simply having insurance might be the difference between ignoring a problem and going to the doctor for a diagnosis.
"So once the problem or the symptoms get so severe and they get to us it's usually pretty advanced which is sad," Westley says. "We've had women come here and their breast cancer is so bad it's literally growing out of their breast."
Aparna Soni is part of research team that has been combing through data since the Affordable Care Act was implemented.
"We found large improvements in insurance coverage among people with cancer. The uninsurance rate among the cancer patient population went down by about one third, more dramatic than expected," Soni says. "A lot of this was driven by states that chose to expand Medicaid."
According to Soni's research, about 6 percent of cancer patients had no insurance before the changes. But in states like Indiana where Medicaid was expanded, that dropped to just over 3.5 percent.
That might not seem like a lot, but it cut the number of people suffering from cancer without insurance by 33 percent. And that's important.
Because Currie had coverage, she didn't put off going to the doctor and ultimately getting her diagnosis. At the time she wasn't making enough money to cover the medical expenses and all the other, sometimes hidden, costs of a cancer diagnosis.
"They took care of mostly everything without me paying out of pocket," Currie says.
Uncertain Future
Currie still has coverage through the ACA, but she's worried about losing it.
The recent Republican tax bill will roll back the individual mandate starting in 2019. That means fewer people will be paying into the ACA and as a result, premiums will go up.
And the President also has taken several measures to weaken the law. Soni says that could mean fewer insured people among the most vulnerable populations.
"There is lot of uncertainty when it comes to the ACA," Soni says. "What our results imply is that if we were to reduce funding for Medicaid or remove protections for those with preexisting conditions, then we might see drops in insurance coverage amongs people with cancer."
Currie says she worries about losing coverage all the time.
"To be honest I don't what I would do if I didn't have insurance," she says. "I'd probably be a basket case all over again."
Indiana Attorney General Curtis Hill recently joined officials from 19 other state in attacking the Affordable Care Act in court. If successful, the lawsuit could mean the end of federal support for Indiana's Medicaid expansion.
Approximately 250,000 low income Hoosiers gained health coverage through the Healthy Indiana Plan.
