Stories Of COVID-19: Chronic Disease Care Is Essential Care

This post is part of a Health Affairs Blog short series, "Stories of COVID-19." The series presents first-person accounts from patients and providers that highlight policy issues raised by the COVID-19 pandemic and response. For longer-form personal essays about health care, read our long-running Narrative Matters series in the journal.

Nine months ago, the author was driving home from Philadelphia in tears. Everything seemed out of control - from the stupid argument she had had with her husband that mourning to her doctor sending his unprepared physician assistant in lieu of himself. The physician assistant told her the test result suggested cancer. She sat in the car crying. (The test result actually proved a suspected autoimmune condition). Then, she dropped her phone in a toilet at a rest stop on the way home. It was a bad day.
But what was at the root of her tears was not anything specific to that particular day. It was something that had been pressing down on her for years - her life was not in her control. Her life was controlled by an illness.

She has had severe pain since she was 14. She was diagnosed with fibromyalgia when she was in her twenties. Three years ago, she received a new diagnosis: a chronic autoimmune condition that causes her white blood cells to attack her nerves. She always hurts, and she is always tired, regardless of how much time she spends in bed or how much she sleeps. It is a fatigue that lives deep inside her muscles.

That drive home from Philadelphia actually became a turning point as she started to envision how to take back control. She decided to take a six-month medical leave from work, combined with physical therapy, regular yoga practice, and participation in a three-and-a-half-week comprehensive pain rehabilitation program at the Mayo Clinic. Her first day of leave, March 1, felt like a huge relief as she knew that she would be spending six months focusing on her body. But two weeks later, the world had changed. Her daughter’s school closed and all her plans for rehabilitation began to slip away.

In the middle of March, medical providers began shutting their doors to outpatient services. The Centers for Medicare and Medicaid Services (CMS) recommended triaging services based on urgency. Many places, such as the District of Columbia, where she lives, went further by recommending a halt to all elective medical procedures and non-urgent outpatient visits to keep hospital beds open, reduce use of personal protective equipment (PPE), and to protect providers from exposure. Providers shifted from in-person appointments to telehealth services. But while the shift to telehealth enabled continued care for many, it failed many people who still needed in-person services during the height of the pandemic, particularly those with chronic conditions.

Virtual Shortcomings
In mid-March, her neurologist let her know her follow-up appointments would be via telehealth for the foreseeable future. Being able to talk with him from her home was convenient, but the visits themselves lacked the comprehensiveness of in-person care. She was not able to focus well, sometimes distracted by a glitch in the telehealth system or the echo of hearing her own voice on a slight delay. She often forgot to mention something important as she felt rushed to end the somewhat uncomfortable interaction, even though she usually has great rapport with this doctor. Every person who is participating in Zoom calls for work and FaceTiming with grandparents knows that it is not the same experience as being in a room with that person. Why would telehealth be different?

She has piriformis syndrome, which she had planned to begin addressing through physical therapy before going to the Mayo Clinic. Her physical therapy (PT) appointments would have been laughable if she did not have such a serious need. In PT, patients expect and need physical contact between patient and provider to receive the benefits of the exercises. This is nearly impossible to do via telehealth with an iPad propped up on a stand. And, because her therapist was on a rolling furlough, she only had appointments every three weeks.

When she got a phone call from a rheumatologist's office cancelling her appointment, she discovered providers weren't seeing new patients. She can live with her hand pain, but she wondered about the people who were showing signs of lupus or rheumatoid arthritis, scared by confusing symptoms and unable to see a doctor even by telehealth.

Finally, there was the day she was dreading, when she learned that the Mayo Clinic was effectively stopping outpatient services for at least eight weeks and the pain rehabilitation program was closed for the foreseeable future. She saw this coming, and yet knowing for certain felt like her control had been ripped away from her.

Care For Chronic Diseases Is Essential Care
As her medical care options were taken away, she couldn't help but wonder if blanket recommendations delaying non-essential care during the height of the pandemic went too far. Patients were forgoing care for serious chronic diseases such as heart disease, and surgeries to remove cancer were being delayed. Patients need their chronic diseases treated to prevent complications. People living with pain need their pain treated so that they can have some functionality and quality of life.

She has had severe pain since she was a teenager. She goes weeks with half her body feeling as if it has a sunburn just under the skin. She sometimes looks down at her hands, half expecting to see the claws of a vulture because the pain running along the bone is so intense it forces her fingers to curl in. Imagine that feeling in your feet from dancing in four-inch heels. That is the pain she has after cooking dinner. When her hip flares it feels like somebody is slicing the muscle from her bone with a burning hot knife. That's just some of the pain that ravishes her body.

When she asked her doctor, over the telephone, if she could get a nerve block, the doctor hesitated. She told the doctor what the pain felt like, as vividly as she could describe it. The doctor responded that "it's just not worth the risk." Over the phone, the doctor couldn't touch her and feel her body flinch away. The doctor couldn't see the tears forming in her eyes.
About seven months into the pandemic, health providers are gradually reopening in-person medical services. Her neurologist has started minimal in-person visits, although most visits remain virtual. Her physical therapy provider has opened in-person visits. The rheumatologist is seeing new patients, and she will be going to the Mayo Clinic for treatment in a couple of months. But what happens if the numbers of COVID-19 infections rise significantly? Does medical care for chronic conditions get shut down again?

No one has ever experienced a health event such as COVID-19. Health care providers and policy makers are struggling to protect people while providing urgent medical care. But who decides what care is urgent? Different providers and different states are making different decisions about what care is provided, often leaving people with chronic illness and chronic pain behind. Chronic diseases, such as heart disease and diabetes, are among the leading causes of death in the US, and access to regular health care is necessary to manage these conditions and prevent acute medical events, such as emergency department visits for uncontrolled diabetes. Additionally, chronic pain changes the brain, and those with untreated chronic pain are more likely to have depression and suicidal ideations. The Centers for Disease Control and Prevention estimates that 8 percent of the population has "high-impact" chronic pain; the author is part of this population. The pandemic effectively cut off people like her from their medical care.

Something has to change. While all in-person medical care for chronic illness cannot continue during a pandemic, there is a level of urgent care that is essential to people living with chronic illness and chronic pain, and it must be treated as such. CMS and the states need to work with providers to safely keep open more outpatient services and elective surgeries. One necessary step is an increase in PPE to a vast array of medical providers so they can safely provide care. Another is a broadening of the definition of essential care to provide care essential to those with chronic conditions. When there is a second bump of COVID-19 infections, there needs to be a plan to allow people with chronic conditions access to health care. They cannot be locked out again.

Original Rescourse:Stories Of COVID-19: Chronic Disease Care Is Essential Care | Health Affairs