BY CLARE HOWARD

Amber Pawula-Marcin speaks in a quiet voice, with a gentle smile, but her story roars out against the mantra “repeal and replace.”

She has watched, listened and read as Congress spent millions of dollars on largely symbolic votes to repeal the Affordable Care Act while President Barack Obama was in the White House.

Now, that safety net is gone. Both President Donald Trump and the Republican majority in Congress want to repeal a program that has reduced the number of uninsured Americans to record low numbers.

Pawula-Marcin has a compelling reason to retain the program: her son Edward, 6.

Pawula-Marcin is the daughter of Peoria Chef John Pawula, owner first of the Strawberry Patch in Princeton, then Stephanie’s and Chef John’s Wine Bar & Grill in Peoria. He was Peoria’s most renowned chef, cooking for top executives at Caterpillar, international travelers and state and national politicians.

While he and his wife ran Stephanie’s restaurant, Pawula, then 41, was diagnosed with a rare form of muscular dystrophy called Kennedy Disease. He died when he was 54.

The disease is genetic, linked to the x-chromosome. While women can carry the link, Kennedy Disease is usually diagnosed in men, ages 40 to 60. There is no cure and the disease slowly progresses. It is closely related to amyotrophic lateral sclerosis, also called Lou Gehrig’s Disease.

Because John Pawula and his wife Sue were self-employed, they had to find and pay for their own individual health insurance plan.

Amber Pawula-Marcin said, “The premiums just went up and up and up. I went to college when I was 18, and my parents put me in the university health insurance plan. By that point, they were unable to change their plan” because of the pre-existing condition.

She said, “Because this is an x-linked chromosomal disease, girls can carry the gene. It was initially thought both parents had to be carriers.”

Later, by the time she learned it could be just one parent, she was pregnant.

“I was 16 to 18 weeks and I got the results and knew he had the gene,” she said. “And we knew that if it’s a boy, he will develop Kennedy Disease. We would not know when but we knew a boy would develop it.”

The typical onset is in the 40s. Although there is no cure, “crispr” gene editing offers some hope.

“He inherited this. My fear is he won’t be able to get insurance. This will be used against him,” Pawula-Marcin said, talking about her son. “Will he be able to change jobs, or will he be stuck in one job and have no options? That’s discriminatory for anyone with a pre-existing condition. They have no guarantee of basic health coverage.”

The Affordable Care Act prevents anyone from being turned down for health insurance because of a pre-existing condition.

Another benefit of the Affordable Care Act is that children can remain on their parents’ plan up to age 26 as long as they are in school. There is no lifetime maximum benefit payment.

She would like everyone to avoid the struggle her parents faced. Her father was finally able to get disability through the state. He couldn’t drive and had a motorized wheel chair but still operated Chef John’s restaurant.  As his muscles weakened, he developed aspiration pneumonia and went into cardiac arrest. He died in the hospital after three weeks in a coma in the ICU.

Politicians calling for repeal of the ACA are suggesting people with pre-existing conditions be placed in a “high risk group,” but the premium for those people would be prohibitively high.

The Affordable Care Act with its mandate that everyone buy health insurance was developed because Congress was not ready to adopt universal health coverage, a system in place in many developed nations that have better medical care and treatment outcomes than the United States.

“Measured by a social justice standard, everyone needs basic insurance,” Pawula-Marcin said.

She is currently in graduate school and hopes to eventually start a business in Peoria combining her training and experience as a chef, her knowledge of health insurance and her training in nutrition to help people practice preventive care.

“We know preventive care saves money. I want to work with people at risk to help them lower the cost of their health care and give them a better quality of life,” she said.

She objects to the notion that health insurance is a business and should be run like one.

“You can’t shop around when you have a health emergency. The guy in Springfield in the emergency room can’t research what Peoria hospitals charge for bypass surgery,” she said. “Consumer business models don’t work for health care when you’re dealing with life and death.”

Pawula-Marcin is working with Katie Jones, an organizer of Peoria Healthcare Coalition, a new group advocating for health insurance solutions.

Jones, who once worked with Sen. Paul Simon, is soliciting real-life stories to illustrate how the ACA has helped people and how its repeal could be devastating.

Jones has her own story of struggle as a single mother, no group health insurance plan and a child who needed extensive testing and treatment for allergies.  She was able to clearly see “health savings accounts” are of little value. She calls that approach a scam that really punishes the poor rather than providing a solution.

Her group will host a conference in Peoria in May to explain support for the ACA.

“There is too much dangerous rhetoric. We don’t want more smoke and mirrors. We want real solutions and health insurance for all,” she said.

“Too many members of Congress are voting against the interests of their constituents. Some experts are predicting a collapse of the health care system in this country if the ACA is repealed without replacement. We have got to proceed responsibly.”

Jones said repealing the ACA with no comparable replacement would risk jobs and harm the local economy. She estimates repeal could result in a loss of 3,000 jobs in the 18th Congressional District. Repeal could mean a loss of $414 million in local economic activity.

Medicaid expansion under the ACA brought in $3.4 billion additional federal dollars to Illinois. The ACA has expanded insurance coverage to 24,800 individuals in the 18th Congressional District, decreasing the uninsured population by 51 percent, she said.

Her approach is to inform the community, build coalitions and force Congress to listen to people who need the Affordable Care Act. You can share your story with her by writing to her at katiejoneslcsw@gmail.com.