When Leah Nolden was diagnosed with Lupus in 2010, she had employer-based health insurance and was able to get treatment. However, she opted to move back to the metro-east from New York City and had to use COBRA to continue her health coverage.
When that expired, and before the Affordable Care Act took full effect, she had a hard time getting health insurance and thought she would have to be put into a high-risk pool at one point, she said.
After the ACA took full effect, Nolden, of Swansea, was able to get a health insurance plan and see the specialists needed to treat her condition.
Nolden shared her story on Thursday during a discussion at Centreville Health Center led U.S. Sen. Dick Durbin, D-Springfield. The discussion included representatives from the Illinois Health and Hospital Association, the Southern Illinois Healthcare Foundation, the Hospital Sisters Health System Group, Living Independently Now Center, and the Gateway Foundation.
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There has been a Republican-led effort to repeal and replace the ACA, commonly referred to as Obamacare. However, in March the GOP House leadership pulled the proposed American Health Care Act before a vote.
But there are negotiations among congressional Republicans to try to revive the repeal-and-replace efforts.
“My fear is if it is repealed and replaced (the ACA), I won’t have the access like I have now,” Nolden said. “If they do keep in the law pre-existing condition have to be covered, how much is it going to cost me. Will it be too much where I’m going to say I’m not going to be able to do this? Am I still going to be able to afford the medicines I have to use?”
Durbin said during the discussion that he wants to repair the ACA, not repeal it. He said he has spoken with Republican senators about possible changes.
“There are things they want to do where I need to be persuaded. There are things I want to do where they need to be persuaded,” Durbin said after Thursday’s event. “That’s how legislation works.”
Durbin said there are parts of the health care system that need to be addressed.
“I think we need to do something where the cost of pharmaceuticals doesn’t keep going through the roof. Insurance companies can’t afford it, people can’t afford it. And the pharmaceutical companies are not held accountable for raising their prices. They just raise them to the limits,” Durbin said. “Secondly we need a Medicare type program offered in every insurance exchange. A not-for-profit program, based on Medicare that people could choose as an option if they wish.”
Durbin spoke about the importance of plans covering mental illness, addiction, maternity, and efforts to remove those requirements could hurt in the long run.
“That’s a good cheap health insurance plan, until you need it. Then it’s worthless. Then it’s no bargain,” Durbin said.
“I think this whole area of behavioral health, mental illness, addiction, is one that is dramatically underserved in America, and in our state,” Durbin said. “We need to provide more services for people who are struggling with these problems, because it could affect every single family.”
Among those to participate in the discussion was Dr. Loren Hughes, president of the HSHS Medical Group.
He said if the Medicaid expansion went away, it would mean a half-a-million-dollar loss for each of the medical group’s small hospitals.
He said before the ACA, patients without insurance would come in and apologize for coming in without a way to pay.
“Once the act came through, a lot of those same patients would come back in, almost giddy with joy, they didn’t feel like they were such a burden on the hospital system and society in general,” Hughes said.
Jeremy Flynn of the Illinois Health and Hospital Association, said more than 1 million people in the state received coverage on the ACA either through the Medicaid expansion or through the exchange.
Flynn said there’s also an economic impact of the ACA, 10 percent of jobs in Illinois is in health care.
“Those are good, high-paying jobs,” Flynn said.
If the Medicaid component, which accounts for 650,000 people, went away, it could mean $3.2 billion the state could lose. It would lead to a drop in $7.5 billion and $8.5 billion in economic activity and a loss of 55,000 to 66,000 jobs state wide, Flynn said.
Dr. Randy Jung, a psychiatrist for Gateway Foundation, which runs alcohol and drug treatment centers, said there are a limited amount of beds available.
“If we were to lose more insurance, it would make it much harder to deliver care to that underserved population, and the same is true for mental health,” Jung said.
Lynn Jarman, executive director of the Living Independently Now Center, said about one in five people under the age of 55 have a disability.
“We’re getting close to this being a civil rights issue, because the people who are going to be the most harmed by this are going to be people with disabilities who are low income, people of color over represented here, and poor people are going to be over represented here,” Jarman said. “If you have the capacity to have a job and have insurance, you have no idea what the other side is like unless you have a family member who is negatively impacted by this.”