COVID Fear Is Keeping Chronically Ill People From Getting Medical Care

The novel coronavirus pandemic is keeping Americans away from the doctor’s office. For most people, that means little more than postponing a dental checkup or enduring a minor illness at home. 

But those with chronic medical conditions ― especially ailments that make them more susceptible to infections like COVID-19 ― face a nerve-wracking choice between staying home and letting their health deteriorate or taking their chances with the virus to get their regular care.

An estimated 45% of Americans, or about 133 million people, have some kind of chronic medical condition, like diabetes, high blood pressure, heart disease and arthritis, according to an analysis published in 2018.

These ailments require ongoing care in the form of frequent doctor visits, lab tests, scans, and medications administered in medical facilities. But these facilities are also places where people can contract the coronavirus, making life-or-death decisions about other health care more complicated. 

“The stakes are much higher for you” if you have certain chronic diseases like kidney failure, said Joseph Vassalotti, a medical doctor and the chief medical officer of the National Kidney Foundation in New York. “You’re going to be at increased risk for severe COVID-19.”

Since the coronavirus reached the United States in January, physicians and other medical providers have seen significant reductions in the number of patients they’ve treated. Those numbers began to rebound in May and June, but with COVID-19 infections soaring again around the country, they likely are declining again. 

Fear is a major driver of this phenomenon. Last month, 52% of those surveyed said they or a family member had skipped needed medical care because they worried about contracting COVID-19, according to a poll conducted by the Henry J. Kaiser Family Foundation. Research also shows a sharp decline in emergency department visits for chest pain and heart attacks and a significant decrease in colorectal cancer screenings, for instance. 

David Oberembt, a 39-year-old who had a kidney transplant in 2017, avoided going to the doctor for weeks, even though he needs to be regularly monitored because of his condition. He takes immunosuppressive drugs to prevent his body from rejecting the donated kidney, and would be more likely to catch COVID-19 if exposed to the virus. 

Oberembt, who lives in Little Rock, Arkansas, must take great care under normal circumstances not to get sick. He also needs regular blood tests to make sure his body is tolerating the kidney, sees a kidney specialist four times a year and meets with his transplant team once or twice annually.

So far, Oberembt has put off all those things. “It’s a calculated risk,” he said. This situation won’t be tenable over a long period of time, though. “I know I can’t put this off forever.” 

While he hasn’t taken care of all of those regular appointments, Oberembt experienced symptoms of a skin condition that might have indicated a new kidney problem and felt compelled to see a dermatologist and get some lab work done last month.

“Overall, I was very anxious about the experience,” Oberembt said. “There were no screenings or anything to get into the building and that made me uncomfortable. I felt comfortable in the actual doctor’s offices. All indications were they were taking the proper precautions. My biggest fear was actually the elevator. What do you do if the doors shut in a crowded elevator and the person next to you starts coughing?”

Many chronic diseases themselves don’t present any increased risk for COVID-19 infection, but people often have other health issues that do, said Kathleen Costello, a nurse practitioner and the associate vice president for health care access at the National Multiple Sclerosis Society in Waltham, Massachusetts. MS patients, for example, may be obese because of limited mobility due to the autoimmune disease, which causes physical and cognitive disabilities.

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For people with MS, the greater risk is that avoiding their doctors, tests and medicines can worsen their conditions, Costello said. “There’s a small risk that their MS could reactivate if they’re not able to get their treatment and they could experience an MS relapse,” she said.

“For some people, particularly in areas where there’s been a surge of COVID cases, there’s reluctance to go out and get an MRI, there’s reluctance to have labs done, and people are trying to stay away from hospitals unless they absolutely have to be there, for fear that they would be at risk to become infected,” Costello said.

Vanessa Cruz, 40, and Cathy McFadden, 53, are friends who live in the same Bronx, New York, neighborhood. They both have MS and participate in a local mentoring and support program for people with multiple sclerosis and spinal-cord injuries. Each has faced this same difficult decision and had to overcome their anxieties about contracting COVID-19 after delaying care and experiencing worsening MS symptoms.

Cruz visits a medical facility every six months for infusions of a medication called rituximab, which alleviates MS symptoms by resisting the immune system’s attacks on the insulation called myelin that surrounds nerves in the brain and spinal cord. Twice a year, Cruz gets an infusion and then returns two weeks later for a second course. 

Cruz had infusions scheduled in March but postponed them. Not only was she worried about exposure to the coronavirus at the medical facility, she was afraid of using public transportation, including a free ride service for people with disabilities. “I’d rather stay home and take my chances than go into the hospital and risk catching something that’s fatal,” she said.

Her symptoms include weakness on her right side that make walking difficult, requiring the use of a power wheelchair outside and a ”rollator″ walker at home. She also experiences fatigue, numbness, leg cramps and pain, speech problems and impaired dexterity. The rituximab helps, but its effectiveness diminishes over time, requiring doses on a regular schedule.

Last month, Cruz finally felt she had to risk exposure to the virus when it became clear she needed more medication. “When I decided to get the infusion, I had what felt like a small relapse, where I needed help to get out of the tub. I needed to be carried out,” she said. 

Cruz went prepared with masks, gloves and hand sanitizer, and she asked ahead of time what precautions the facility was taking. It went well, she said.

McFadden’s dilemma was similar. The coronavirus pandemic stoked a lot of anxiety for her, she said. “I was terrified to get my own mail,” she said. “I was becoming one of those nut jobs. Then I said, ‘I’m making myself crazy,’ which isn’t good for MS ― stress is our biggest problem.”

Normally, McFadden visits an infusion center every six weeks to receive injections of a drug called natalizumab that, like Cruz’s medication, fights against the immune system’s attacks on the body that cause and worsen MS. In the midst of New York’s massive coronavirus outbreak, McFadden decided to wait it out and delayed her infusion for three weeks.

“For me, that’s kind of debilitating. I feel when the medicine is wearing off. That’s when it was difficult to transfer from the bed to the chair,” McFadden said. “My right hand has a very bad tremor, so when the meds are wearing off, the kitchen is dirty, I’m dropping everything, I’m hitting myself upside the head,” she said.

Finally, her nurse practitioner convinced McFadden it was time to get treatment. She, too, worried about transportation to and from the medical office and about riding the elevator in her apartment building, but was satisfied with the safety procedures at the infusion center. 

Which is not to say that McFadden’s anxiety has disappeared. Even though she reached the conclusion that leaving her diseases untreated posed a greater immediate risk to her health than the coronavirus did, she’s still wary. 

“This whole pandemic is crazy,” McFadden said. “It’s a whole new world and it’s just terrifying when you have this kind of disease.”

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This article originally appeared on HuffPost and has been updated.