Left Behind: The pandemic revealed how the U.S. really thinks about its chronically ill

As the number of COVID-19 cases in the U.S. increased by the tens, hundreds, and then thousands last March, I and many others in the chronic disease community knew what to expect.

I have lived with lupus for more than a decade and an autoimmune blood disorder for the last four years, so I’m used to avoiding gatherings or visits with people who have obvious symptoms of infectious disease. Because I take immune-suppressing drugs to control my condition, I’m already cautious about my outings during flu season, and know how to slyly dodge a handshake from a person who has just sneezed or coughed.

So wearing masks and social distancing made sense and almost felt natural to me, at least at first.

What I was really dreading was that my health and wellbeing as a chronically ill person would soon take a back seat, my monthly medication supply, once deemed essential, would be delayed and withheld, and the medical team once so vital to my life would be impossible to get a hold of.  

If the COVID-19 pandemic has taught me anything, it’s that the U.S. has a complicated relationship with chronic disease. It seems that many cannot conceive of the fact that a person can appear healthy and lead an active, productive life while also living with a long-term condition that has challenging, life-altering symptoms. Many don’t fully grasp that they or someone they love is actually living with a chronic illness right now that leaves them at higher risk of COVID-19 complications. That eagerness to overlook the plight of chronically ill Americans is reflected everywhere from dinner tables to media coverage to ostensibly progressive health care systems.

This chronic disregard leads someone like me to the conclusion that this country has trouble viewing the chronically ill as important, productive members of society. And it shows. Especially now.

The way the media covered COVID-19, and the way that audiences responded, were big indicators that Americans viewed the chronically ill as unimportant, especially in the early months of the 2020 hellscape. The pandemic may be a golden age for science and health journalism, but not for the comment section.

The comment sections of many news articles were brutal. With each new article about someone who had died from COVID-19, the commenters would erupt with accusations. “Way to bury the lead! This person had diabetes.” Or a frequent one: “Stop fearmongering! Why wait until two paragraphs in to mention this person had chemotherapy last month?”

The underlying message seemed to be that the death of an already sick person from another disease wasn’t news. That because the person was already battling disease, their death from this new, mysterious illness was unremarkable, unsurprising, and thus, not a reason to pay attention and change behavior. People seemed all too eager to prove to themselves they needn’t worry. The same could be said for the reaction to elderly deaths. “Not us.”

Over time, it became clear that COVID-19 was a disease that would threaten all of our lives, once the obituaries of middle-aged pastors, young bus drivers, and new mothers became too numerous to count. 

My experience with getting health care during the first half of the pandemic was a practice in anger management. When Trump hailed hydroxychloroquine as the new miracle cure for COVID-19, my stomach clenched. Not only because I knew there was no evidence base to declare hydroxychloroquine as a cure all for COVID-19, but because I knew the drug I’ve used for years — the most common and effective treatment for lupus in the last several decades — was about to become unavailable.

News stories referred to hydroxychloroquine as a “malaria medication,” erasing the countless individuals who take the drug daily for lupus, rheumatoid arthritis, and other serious conditions.

My insurance provider’s handling of the drug’s supply was shocking.

After repeated attempts to get ahold of my rheumatologist and Kaiser Permanente’s pharmacy, I received the following message:

“As you may have seen in news reports, hydroxychloroquine has shown promise in treating COVID-19 infections…Please do not contact your doctor about making an exception for refills…Thank you for helping those who are critically ill. You are helping us save lives. We appreciate your understanding…”

I did understand. The urgency of acute illness eclipsed the need for preventative and long-term care. I was left to see which would come first: a dangerous flare up of my conditions, or an increased supply of my drug.

One night I was up until 11 p.m. arguing with pharmacy techs about whether I could in fact survive 40 days without my daily medication, as they said my rheumatologist had indicated. I didn’t hear back from Kaiser’s rheumatology department for weeks, despite my many efforts. 

In the end, I was able to access my regular supply of hydroxychloroquine after the drug lost its luster and studies failed to reveal any significant improvement in severe COVID-19 disease or survival. While the anxiety of that temporary crisis passed, the sense that my health and well-being could suddenly be deemed unessential remained.

The stories of lupus patients around the country reveal that like me, many were suddenly cut off from their medication with no emergency supply and little explanation or consolation from their health care provider. My case of lupus is considered mild; I can’t imagine the fear experienced from lupus patients with severe kidney and lung damage from the disease.

As I sit writing this, my parents are staying with my husband and I in Southern California. They just got their second dose of the Moderna vaccine this weekend, through a community campaign targeting high-risk people. My husband, a professor, became eligible for vaccination last week as part of a state expansion for people in education, and just got his first shot.

My chronic diseases were left off the list of conditions eligible for vaccination in California as of March 15, after Governor Newsom expanded his previously age-based priority list to include those with a narrow list of disabilities and conditions as eligible. Ironically, the fact that I work for a university will make me eligible for vaccination before my status as someone living with serious chronic conditions. As I and many others at high risk of severe complications from COVID-19 have anxiously wait for inclusion, only my faith and my husband's extra efforts to keep me safe sustain me. I’m not holding my breath for our health care system.