People waiting to be tested outside an urgent care center in Riverhead in 2020. Photo: Peter Blasl

Long Island is in the midst of an unprecedented COVID-19 surge, thanks to the many gatherings with family and friends that took place during the holidays and the omicron variant, which is significantly more contagious than than delta. This was entirely predictable, but it’s as if our government agencies and healthcare systems were taken by surprise, because we are sadly unprepared to deal with this surge.

Take, for example, our testing capabilities. If you’re feeling possible COVID symptoms (shortness of breath, coughing, sore throat, fever, gastrointestinal upset or loss of smell/taste) and want to get tested for COVID-19 on Long Island this week, good luck finding a test!

I have an autoimmune disease that has given me some cardiac and pulmonary complications, so I have been extra cautious in trying to avoid COVID-19. However, I started to develop symptoms that could be COVID-19 related on Dec. 28. I wanted to get tested as soon as possible, because there is a narrow window early in the course of the infection where you can benefit from monoclonal antibodies or anti-virals like Remdesevir, which reduce the risk of hospitalization and death. Access to these early interventions is especially important for high-risk people like me with underlying cardiac and respiratory conditions.

I called my primary care doctor. No tests available. I called my specialists. No tests available. I called several Long Island hospitals, to see if there was any way someone with COVID-like symptoms who is a high-risk category could get a test. I was told the only way to get a COVID test was to book a testing appointment online, and the online booking sites were flooded with people who needed a test for travel or work purposes. I tried to book an appointment online for testing at Stony Brook, Peconic Bay Medical Center, Northwell’s testing site in Roslyn, any CVS or Walgreen’s in the metro area, any walk-in clinic… nothing was available until Jan. 6. With an average three-day turnaround time on PCR tests, that means I would not have my results until Jan. 9, more than 10 days after the onset of my symptoms – too late for early intervention monoclonal antibody and anti-viral early infusions to be effective.

I tried to find at-home testing kits, even though they are not as reliable as PCR testing, especially when it comes to detecting omicron. Car trips and phone calls to over two dozen pharmacies, 7-Elevens, and grocery stores in Suffolk County turned up no tests. I posted on social media groups, “has anyone found at-home test kits?” A friend heard there was one test left at a pharmacy in St. James. Another heard the 7-Eleven in Shirley was getting a delivery of test kits soon. By the time I visited the store or called, those tests were gone too.

I was thrilled to hear on the morning of Dec. 29 that Suffolk County was opening a first-come, first-serve test site at Hecksher State Park that would be open from 8am-4pm. I arrived by noon on the first day of testing. They had already exceeded their 1,000 tests for the day and closed by 9 a.m., so I left without a test. Were Suffolk County officials so unaware of the huge demand for testing that they actually thought 1,000 tests would last until 4pm?

Then a doctor friend tipped me off that Stony Brook Southampton had PCR nasal swab testing on a first-come, first-serve basis. After a four-hour wait in line (thankfully in our car), I was finally tested. Hallelujah!

As I engaged in this multi-day, county-wide scavenger hunt while experiencing miserable symptoms, I started wondering, why are our government agencies, large hospital systems and national pharmacy chains not prioritizing tests for people with COVID-like symptoms, and people in high-risk categories? Why is the person who wants a test so they can go on vacation getting the same priority access to testing as someone who is actually symptomatic and at risk of severe illness or death? Why are we not planning our testing programs to help identify people who will benefit from early intervention monoclonal and anti-virals in a timely manner? And just as importantly, why is our testing infrastructure so poorly prepared to handle the post-holiday surge we all knew was coming?

Until the surge is over and finding a timely test is as easy as it should be, government agencies, hospital systems and larger pharmacy chains should immediately implement policies that prioritize PCR testing access for symptomatic patients and high-risk individuals. Additionally, Suffolk County’s and New York State efforts to expand testing access need to roll out now; not next week, not next month. The surge is already here.

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Lauren Stiles is the cofounder of Dysautonomia International and is an outspoken advocate for individuals living with autonomic disorders. She has lectured on autonomic disorders during U.S. Congressional Briefings and at the National Institutes of Health, Harvard Medical School, Duke University, and numerous other medical schools and hospitals. She lives in East Moriches.