For medically vulnerable households, inflationary pressures are inevitable

ROSAMOND, Calif. — Deborah Lewis got out of bed before dawn and signed on to her phone so she could start delivering fast food, coffee and groceries to residents of this western patch of the Mojave Desert where test pilot Chuck Yeager broke the sound barrier.

Lewis prayed she would earn $75, enough to fill the tank of her Kia sedan so she could drive her 8-year-old daughter Annabelle 80 miles south of Los Angeles to receive her weekly chemotherapy treatment for acute lymphoblastic leukemia. Just a year ago, the same tank of gas would have cost $30 less.

After working full shifts as a gig worker, Mom earned close to what she needed. “It took a lot longer than I thought,” she said.

High inflation is hitting families across the country. According to the US Bureau of Labor Statistics, consumer prices rose 8.5% in July from a year earlier, one of the biggest increases in recent decades. The Bureau of Economic Analysis found that consumers are spending the most on housing and utilities, food and medical care.

Overall wages continued to rise, but after adjusting for the rising cost of goods and services, workers’ paychecks fell 3.5% from last year. A recent KFF poll found that 74% of registered voters put inflation, including rising gas prices, at the top of their concerns.

For millions of families living with chronic diseases — such as heart disease, diabetes, and cancer — or other debilitating conditions, inflation is proving a punishing curse that can be detrimental to their health. Unlike eating less or buying less clothes, many patients have no choice when it comes to paying for medications, medical supplies, and other incidental expenses. Some have to drive long distances to see a specialist and others must adhere to a strict diet.

“Chronic disease patients are often on the front lines of supply shortages or rising out-of-pocket costs,” said Paul Conway, chair of policy and global affairs at the American Association of Kidney Patients.

Healthcare has become increasingly unaffordable. According to KFF polling, half of adults report difficulty paying their health expenses. One-third said they or a family member had skipped recommended treatment in the past year because of cost, and one-quarter of adults reported rationing pills or leaving prescriptions unfilled.

The Lewis Family - From left, father Spencer holds their dog.  Beside him is his wife, Deborah, who is holding their son Wayne.  Their daughter, Annabelle, is on the right, wrapped in a colorful blanket.

The Lewises — from left, Spencer, Deborah, Owen, and Annabelle — hang out with their dog, Chief, at their home in Rosamond, California. The family relies on Spencer’s disability check for rent and utilities and Deborah’s freelance work for gas. (Heidi DeMarco/KHN)

A young girl, Annabelle Lewis, wears a pink shirt and sits on a gray sofa.  She smiles slightly at the camera, her cheek resting on her palm.  She lost her blonde hair during chemotherapy treatment.

Annabelle Lewis was diagnosed with Acute Lymphoblastic Leukemia in August 2021 and her treatment resulted in the loss of most of her long blonde hair. (Heidi DeMarco/KHN)

Inflation has further squeezed families by increasing the cost of gas and food, as well as medical products such as needles and bedwetting pads. Health care costs rose 5.1% from July 2021, and medical supplies — which include prescription and over-the-counter drugs, medical equipment and supplies — rose 3.7%.

Inflation is particularly harmful to the health of low-income patients; Studies have found a strong link between poverty and health. According to the California Budget and Policy Center, more than half of California households spend $50,000 or less on food, housing and medical expenses.

For Deborah Lewis and her husband, Spencer, their worries about rising gas costs were never about missing summer trips or weekend getaways. Making sure they had enough gas to take Annabelle to Children’s Hospital Los Angeles for chemotherapy and other drugs delivered through a port in her chest.

The family relies on Spencer’s disability testing, which she receives because she has Ehlers-Danlos syndrome, a genetic disorder that causes her to have severe joint pain. He also deals with a ruptured disc in his spine and a cyst pushing against his spinal nerves. In January, he stopped working as a pest control technician, shifting more financial responsibilities onto his wife.

Disability checks cover rent and utilities, leaving Deborah’s freelance work to cover gas. They receive $500 a month from Miracles for Children, which helps families of seriously ill children.

One morning in June, Deborah packed snacks for the drive while Annabelle waited on the couch, wrapped in her favorite blanket. Her treatment has caused most of her long blonde hair to fall out. The night before, Deborah spent $73.24 filling up at Costco.

Before they left, Deborah learned that the couple carried a negative balance in their checking account. “I have a lot on my plate,” she said.

The family has already delayed health care for one family member: Their dog, a Doberman Pinscher named Chief, skipped a vet visit for a mass pushing into his intestines.

A door illuminates a long, dark hallway.  In the room, you see a young girl and part of her room, lit with a pink glow from her lamp.
Annabelle Lewis wakes up at 4:30 a.m. every Friday to prepare for a long trip to Children’s Hospital Los Angeles for treatment for her acute lymphoblastic leukemia.(Heidi DeMarco/KHN)

Politicians are acutely aware of the leaching effects of inflation. In October, most California households will receive an “inflation-relief check” of up to $1,050 to help offset higher prices for gas and other goods under the budget Gov. Gavin Newsom signed in June. The average price of a gallon of gas in California is over $5, while the national average is around $4.

But health experts worry that even with one-time aid, affordability could become a life-and-death issue for some Californians. For example, insulin can cost anywhere from $300 to $400 per vial without insurance.

“We’ve seen a lot of patients living with diabetes and a fixed income greatly impacted by rising inflation,” said Matthew Freeby, an endocrinologist and director of the UCLA Gonda Diabetes Center. “Both type 1 and type 2 diabetes typically require multiple prescription medications that can already be expensive. Patients have to choose between daily expenses and life-saving medications, such as insulin or other treatments.”

Inflation is also a challenge for people who rely on certain foods as part of their health care regimen, especially with food prices rising 10.9% over the past year.

Tyan Miller, 60, an integrative nutritional health practitioner in San Dimas, Calif., has vasculitis and Hashimoto’s thyroiditis, two autoimmune diseases that cause inflammation. Miller’s medically appropriate diet requires gluten-free, organic foods. Miller says she’s been dipping into her savings to afford the average $300 she spends each week on groceries. Last year, he spent about $100 less.

“The price of avocado mayonnaise shocked me,” he said. “It was $8. Now, it’s $16.99.”

Even those who are healthy can help their family or friends in need.

In the hilly Los Angeles neighborhood of Laurel Canyon, Shelley Goldstein, 60, helps her parents, both in their 90s, pay for items like incontinence products, which are not covered by health insurance. Goldstein’s father was recently diagnosed with Alzheimer’s disease and lives in a retirement community with his wife, Doris.

“These are basic things, but it’s like $70 a month between the two of them,” said Goldstein, who works as a speaking coach. “That’s a lot.”

Goldstein worries about how much more of her parents’ health care costs she will have to shoulder since they are pensioners on fixed incomes.

“What keeps me up at night now is what’s coming,” he said. “There are two of them. My parents’ need for pads, meds and other medical support increases as their health deteriorates.”

Deborah and her daughter, Annabelle Lewis, walk toward the glass entrance of a children's hospital.
Deborah and Annabelle Lewis arrived at Children’s Hospital Los Angeles on June 17, 2022 after driving more than two hours from their home in Rosamond, California.(Heidi DeMarco/KHN)

This KHN story first appeared on California Healthline, a service of the California Health Care Foundation.

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