Nancy Weaver: Caught in the Coverage Gap

Nancy Weaver lives in Ashe County, North Carolina, in the far corner of the state where Tennessee and Virginia meet. She is a fiber artist and weaver who has spent her career making shawls and dish towels, and she has spent much of her adult life navigating the health care system without insurance.

In 2008, Nancy’s life changed dramatically in a matter of months. She and her family finished building their own home by hand. Then, in August, her mother was diagnosed with metastatic breast cancer and moved in with them. Four months later, Nancy’s husband died. She kept a high-deductible catastrophic plan for a short time afterward — about $175 a month for herself and her son — but it offered little for day-to-day care, and she eventually dropped it. The family went without insurance for years.

In 2012, Nancy was diagnosed with Hashimoto’s thyroiditis, a debilitating autoimmune disease affecting the thyroid. Without insurance, basic specialist care was out of reach. “You can’t go to the doctor without money,” she said. “You just can’t.” An initial appointment with an endocrinologist would have cost about $1,150 before blood work, so, she never made it. She eventually ended up hospitalized, received a diagnosis, and was put on medication, but within a year, the blood work required to renew her prescription cost over $500, which she could not afford. She went without. Friends who were also on thyroid medication would give her their leftover pills when their dosages changed, leaving Nancy to guess at what amount might help.

The untreated condition, combined with grief and depression, pushed her to a crisis point. She became suicidal. It was only when she voiced those thoughts aloud that her children intervened, connecting her with a nurse practitioner who saw her and got her back on medication. However, Nancy continued managing her health in a patchwork manner.

As a self-employed weaver, she earned below the income threshold required to qualify for marketplace subsidies, which at the time was $12,000 a year. Full-price coverage would have cost her $1,100 a month with a $6,000 deductible. “Of course, that’s not even doable,” she said. She was caught in the coverage gap — earning too little to afford insurance, but not qualifying for the help that was supposed to make it accessible.

That changed in 2021, when her daughter had a baby and the worker who was supposed to cover her during maternity leave quit the day before the birth. Her daughter, an office manager for a lumber company, worked from home for two weeks postpartum. She called Nancy one morning asking her to come in around 4 a.m. just to hold the baby while she prepared for an OSHA appointment. Within days, that arrangement had evolved into a paid position: her daughter’s employer hired Nancy at $15 an hour to provide childcare in a converted office nursery. She held that job for nearly three years. The steady income finally put her above the ACA subsidy threshold, and for the first time in her adult life, she had health insurance.

The difference was immediate and profound. “I don’t think I had any idea how much of a feeling of self-sufficiency that having health insurance would give me,” she shared. Nancy could finally see a thyroid specialist. She could get blood work when she needed it. She could call her provider, describe how she was feeling, and have her medication adjusted. When she passed out at a restaurant during a flare-up of her autoimmune disease, she went to urgent care and the emergency room without dreading an unmanageable bill. “I was left owing like $75 instead of thousands and thousands. It’s just so freeing,” she shared. Nancy also gained access to therapy to address childhood trauma and PTSD, care she credits with making her a more present mother, grandmother, and community member.  “It’s so expansive what having the ability to take care of your health does for you,” she said, “and the idea that people want to take that away is just evil. It really is.”

The contrast with life before coverage was not abstract. Nancy describes raising her children without insurance, keeping mullein and garlic oil on hand for ear infections, and mastering butterfly bandages out of necessity.

Now, with coverage costs rising again, Nancy worries about what comes next. She had not expected to still have insurance after January 2025 and is already thinking through what a return to uninsured life would look like. Her primary care provider offers cash-pay visits at $80, a fallback she is quietly preparing for.

Her message to policymakers is clear. “We don’t really recognize that a problem is a problem until it happens to us,” she said. She asks lawmakers to imagine their own mothers going without care for a debilitating disease, or going bankrupt trying to pay for it. She points to research showing that adverse childhood experiences are a stronger predictor of substance use disorder than obesity is of diabetes, and argues that denying children adequate mental health coverage perpetuates cycles of addiction and trauma that her rural community has lived with for generations. “The people who are closest to the problem are the people who are closest to the solution,” she said. “If you have a question about the ACA, talk to the people who are using it.”