Emma Widmar, shown with her dog Zander, has relied on Medicaid while managing complex health problems that she has had since she was 12. (Photo courtesy of Emma Widmar)

At the age of 26, Emma Widmar has been chronically ill for more than half her lifetime.

Widmar was 12 when her symptoms first showed up — severe allergies to food, hormones and her environment. At the age of 18 she qualified for Social Security disability payments as well as for Medicaid. The combined federal-state health insurance program pays for her ongoing medical care, frequent emergency room visits and necessary home care.

“I equate Medicaid to a lifeline,” Widmar says. “Some people might think that’s an exaggeration, but it isn’t. It ensures all my needs are met.”

With the enactment on July 4 of the mega-bill extending the tax cuts passed during President Donald Trump’s first term along with deep cuts in Medicaid and other safety net programs, Widmar is uncertain how her life might change.

After she graduated from Gateway Technical College, Widmar worked for four years for the Racine County Eye, an online journalism outlet. A case of respiratory syncytial virus — RSV — in January 2024 brought on severe neuropathy and hampered her breathing, forcing her to give up a job she had loved.

“I lost my ability to walk,” Widmar says. “It really wreaked havoc on my body and I couldn’t keep up.”

As complex as her health problems are, they’ve also become deeply familiar to her. 

 “It has been my life, and I simply can’t ignore it,” Widmar says. “It’s just the way that it is.”

While she and her family along with many others hope that science will one day unlock treatments for intractable illnesses such as hers, “these are chronic, lifelong conditions that right now there’s no cure for,” she says. For now, “it’s about finding the best quality of life for myself.”

Widmar lives with her parents in Mount Pleasant. Her mother is a primary caregiver.

Wisconsin’s home- and community-based care Medicaid waiver covers the cost of medications “that allow me to function,” she says.

 It also makes it possible for her to have additional home and personal caregivers. With Medicaid “those caretakers can be compensated,” Widmar says. “It ensures that I always have eyes on me and that I’m getting what I need.”

Her chronic food allergies require a special diet, with food that is more expensive than the typical grocery store purchase. Widmar’s disability has qualified her for benefits under the Supplemental Nutrition Assistance Program — SNAP, known as FoodShare in Wisconsin.

“Health care and food assistance are not just line items in a budget — they are a matter of life and death for American families,” said Sondra Goldschein, executive director of Family Friendly Economy, which campaigned against the mega-bill and shared the stories of people affected by it, including Widmar.

The bill passed despite widespread popular opposition. Widmar says she wants to encourage people “to continue voicing their opinions to policymakers, lawmakers and politicians,” not give up in resignation. “We are the ones that employ the government,” she says. “They work for us and we have to remind them of that.”

Widmar suspects most people wouldn’t consider her a typical Medicaid recipient — younger, coming from a middle-class upbringing and with a family that is able to support her. But that’s really the point: Medicaid, she observes, has helped people from all different backgrounds, regardless of class, race, ethnicity or education.

She also expects the spending cuts will ripple far beyond the Medicaid population.

“We’re altering health care as a whole, which will have an impact on everyone,” Widmar says.

For several years, the Affordable Care Act has helped drive down the number of people without health insurance. The mega-bill’s changes not just to Medicaid but also the ACA have been forecast to reverse that trend, increasing the uninsured population by 17 million over the next decade.

One Medicaid change, scheduled to take effect in 2027, will be the imposition of work requirements for some recipients. Nationally, two-thirds of Medicaid recipients already work full- or part-time, according to KFF, a nonprofit health policy research, polling and news organization, and researchers have found that some people who qualify are excluded due to paperwork problems.

Widmar has already experienced a work requirement as part of her SNAP enrollment. When her illness made work impossible, the requirement was waived.

With the extent of her current disabilities, she hopes that she would qualify for an exemption from the coming Medicaid work requirement.

She might not know for sure until late 2026, however. Wisconsin won’t be able to draw up the details of how it implements the work requirement until the publication of the federal rules, which aren’t due until next June.

In her previous experience with SNAP, Widmar said work requirements didn’t always match the realities for people with disabilities.

“Unfortunately we don’t make it easier for people who are disabled to have a job and contribute,” she says. “It’s not a system that says, ‘We have a work requirement — do what you’re able to do…’”

When she was able to work, “I loved my job,” Widmar says. Her employer was understanding and accommodated her disabilities.

That was no small matter. Because of her condition, Widmar says, she can’t be alone: Her low blood pressure can cause her to faint unpredictably. Her hours also had to be flexible to match her erratic energy levels.

“It’s difficult to work and have a disability and be on these programs,” Widmar says. “It’s like an agility course you have to go through.”

While Widmar is concerned about what lies ahead for her when the changes to Medicaid take effect, her foremost worry is for people whose lives are more difficult.

“I have a support system to help me get through it. But there’s people that don’t know where to turn for help. And it’s really unfortunate for them,” she says.

For people living at or near poverty, she sees life on the verge of becoming more harsh.

“We’re already at bare bones,” Widmar says, “and now we’re taking away more from the most vulnerable populations.”