After a COVID Expert Struggled to Obtain New Treatments for His Parents, He Tweeted a Road Map

There’s not much about the byzantine American health-care system that confounds my brother-in-law, Farzad Mostashari. He trained in epidemiology at the Harvard School of Public Health before getting his medical degree at Yale. In 1999, he was one of the New York City Department of Health’s lead investigators into the outbreak of the West Nile virus. In the Obama Administration, he headed a federal drive to persuade doctors and hospitals to adopt electronic health records and, later, co-founded a health-care company, Aledade, which tries to prevent unnecessary emergency-room visits and hospitalizations. When the pandemic hit, he became a regular presence in the wonky precincts of Twitter analysis tracking the outbreak and its impact on the health-care system’s ability to keep up.

Last month, the virus infected his parents, who are elderly and live near Boston. In two years, they had barely left their house, except to get vaccinated and boosted. Three days into a trip to New Hampshire, his father, who is eighty-six, tested positive. He was feverish, wheezing, and breathing too rapidly. “That last one is actually the most significant,” Farzad told me. “If they get tired and that slows down, then they could fall off the edge of the cliff from the respiratory point of view.”

If it had been 2020, in the early waves of the virus, his father could have been at fatal risk. But three years of miraculous scientific advancements have produced drugs such as Paxlovid, an antiviral medication developed by Pfizer. Last fall, the company reported astonishing results. If high-risk patients started the drug within three days of the onset of symptoms, it reduced hospitalizations and deaths by nearly ninety per cent. Initially, health officials were forced to ration Paxlovid. When New York City received thirteen hundred treatment courses in December, it ran out of them within a week. The Biden Administration ordered large amounts of Paxlovid and announced a program called Test to Treat, which would allow patients who suspect they have COVID to visit one of hundreds of predetermined locations, such as CVS clinics, for a test and, if needed, a free supply of Paxlovid.

Kaiser Health News, though, recently described an effort to use the programs as an odyssey “that few people can afford in general, let alone when they’re sick.” Millions of chronically ill, disabled, and older patients are eligible for the treatments, but whole swaths of the country lack test-to-treat sites. Twenty-eight per cent of Americans had no consistent source of health care before the pandemic, Kaiser noted. And the rate is even higher in Black and Hispanic communities. A review of U.S. data published by Reuters last week found that, through the first half of April, the government had distributed around one and a half million Paxlovid courses and that pharmacies still had more than half a million available.

In the case of Farzad’s father, the program was a poor fit for other reasons. He had already tested positive, and requiring a feverish octogenarian to visit a pharmacy seemed to pose obvious risks to both him and others. Instead, Farzad tried to get a prescription over the phone from his father’s primary-care doctor, but that effort collided with one of the most frequent complaints in American medicine: chronic delays. He left messages online and with the answering service—and waited. “Eight o’clock becomes nine o’clock becomes ten o’clock, and I’m feeling a tremendous sense of urgency that we just need this prescription started as soon as possible. I called back to the service and said, ‘Please? Any news?’ And they’re, like, ‘Nope. We don’t know.’ ”

For many Americans, it’s a familiar scenario, which frustrates both patients and doctors. In studies, primary-care physicians report feeling overburdened and overstretched by a health-care system that pays them by the volume of patients they see and tests they order, leaving little time for in-depth interactions or surprises—such as a phone call from a patient. As noon approached, Farzad found a detour: a virtual visit with an urgent-care clinic. Online, a nurse agreed that his father qualified for Paxlovid.

But there was another problem: the federal rules require a test of kidney function to determine the right dosage. Getting to a lab would be as risky as getting to a pharmacy, and it could be days before results came back. Eventually, the nurse agreed to prescribe a low dose of Paxlovid, based on a kidney test from nine months earlier. “The good-news part of this is that I drove over to the pharmacy, and they handed it over for free. And I also got eight free rapid antigen tests,” Farzad said. “But, if we really want to get Paxlovid out to all the people who need it, we need to figure out a way of simplifying that decision-making.”

His father recovered, but, days later, his mother tested positive and fell ill. She is eighty-three, with multiple medical conditions, and Farzad hoped to get her another new therapy—an infusion of monoclonal antibodies called bebtelovimab, which can rapidly boost immune defenses against the coronavirus. Public data showed that, as with Paxlovid, Americans have struggled to navigate the system to obtain it.

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In Massachusetts, state health officials created a phone number, which patients can use to circumvent the delays in the primary-care system. Farzad started calling it from the moment it opened, at 8 A.M., and, after having left several voice mails, he reached a person, who scheduled his mother for an infusion that afternoon at a site an hour away. It was free, and the department even provided a wheelchair, but the experience demonstrated how difficult the process is for patients to figure out on their own—especially the elderly under stress.

His mother’s condition improved within hours of getting the treatment, and, in a Twitter thread, on April 14th, Farzad documented the steps that he took to get the drugs. “We are all fine,” he wrote. “But it shouldn’t be this hard.” The thread attracted attention; some people called it a road map for navigating a mystifying system. Another doctor, who is a friend of his, wrote a summary for people to download and save, including pursuing a virtual urgent-care visit in the absence of one’s primary-care physician—what Farzad called the essential “hack.” On Twitter, Ron Klain, the White House chief of staff, replied, a bit testily, from his official account, “This isn’t a hack: this is the program the President announced earlier this year,” and appended a link to covid.gov. In fact, the program has its limits, as health-care experts have documented.

Julie Ann Justo, an associate professor at the University of South Carolina College of Pharmacy, told me, “There are a handful of CVS MinuteClinics here that can operate as test-to-treat locations. But if I have a patient—of which we have many in this state—that lives in a more rural area, they’re going to struggle to find a test-to-treat location. So one of the things that the pharmacy profession continues to advocate for is the authorization to provide those prescriptions to patients.”

More to the point, she said, even savvy patients get derailed and unnerved by the perverse obstacles of the American health-care system—particularly when getting a drug in the first days after infection is crucial. “I have also experienced being infected with COVID—and also navigating my family and friends and loved ones through the health-care system,” Justo said. “And I can definitely empathize, and corroborate the existence of these barriers. It takes hours out of someone’s day to organize this, and we know whom to call.” Many of the patients in her area lack basic information and resources. “Some don’t know if they should call urgent care. Others don’t know how to set up a virtual visit. Many don’t have a primary-care provider. Or don’t have someone that can call on their behalf. Some don’t have access to the Internet on their phone. How do I even step into the U.S. health-care system to get this started?” She added, “The COVID pandemic was a litmus test for our health-care system, and I’m not sure that we are happy with the results.”