New York City’s Test & Trace program is launching an initiative to help patients suffering from COVID-19 symptoms long after coronavirus leaves their system.
The AfterCare program, run through the city’s public hospital system, will start reaching out to Test & Trace patients who were still experiencing COVID symptoms at the end of their isolation period to see if they need help dealing with the potential long term effects from the disease—a condition referred to as long COVID, long-hauling or post-acute COVID-19 syndrome. Dr. Amanda Johnson, the director of the Take Care program with Test & Trace, said Wednesday that it will help patients access physical and mental health care, community support, and financial support.
“Not a week goes by that my patients are not touched and affected by the long-lasting impacts of COVID-19,” Johnson said. Long COVID is generally defined as symptoms or complications that last longer than a month. Patients can experience fatigue, muscular weakness, a cough, anxiety and depression, problems sleeping, chest pain, post-traumatic stress syndrome, kidney disease, and hair loss, among other symptoms. Some can lose their sense of smell—a typical symptom of coronavirus—or have it return only to be much worse.
Since COVID-19 has disproportionately impacted people of color, researchers who authored a March study in Nature Medicine have said larger studies need to look more closely at the intersection between long COVID, race and ethnicity.
“This is happening in thousands of households across New York,” Johnson said. “As we learn more about long COVID—what it entails, what to expect, how people are affected, and what the best treatments are—we’re continuing to enhance and personalize the range of resources that we’re able to offer individuals who are living with long COVID.”
Johnson said 10% of patients end up with long COVID, without offering a source for the figure. The full-scale prevalence of post-COVID syndrome is unknown according to the Centers for Disease Control and Prevention, but one large review of the medical literature found about 50% of COVID patients experience long-term fatigue. That analysis also reported that hair loss and attention deficits happened in a quarter of long-haulers, while extended headaches occurred 44% of the time.
The city has already established long-hauler clinics in Queens and the Bronx offering lung care, supplemental oxygen, heart care, radiology scans like X-rays and MRIs and mental health services. Another clinic will open in July in Bushwick, Brooklyn. Various medical centers around the city also offer healthcare for long-COVID patients.
In late February, the National Institutes of Health began soliciting research proposals to study long-COVID to better understand how often it occurs and how the disease works. The initiative is backed by more than $1 billion in funding allocated by Congress over the course of four years. “We do not know yet the magnitude of the problem, but given the number of individuals of all ages who have been or will be infected with SARS-CoV-2, the coronavirus that causes COVID-19, the public health impact could be profound,” the NIH director, Dr. Francis Collins, wrote February 23rd.
A December study from the NIH revealed that among more than 3,700 “long haulers” across 56 countries, nearly half couldn’t work full time six months after catching the virus. Patients most commonly suffered fatigue, which worsened after physical activity, as well as cognitive dysfunction, more commonly called brain fog. Collins wrote in January that even a small number of people getting long COVID is a “significant public health concern.”
“The post-acute COVID syndrome is something that is only beginning to acquire a definition and some understanding in the medical community, but we’re far from having a complete understanding of what this really means,” said Johnson, the Test & Trace official. Mayor Bill de Blasio added that the AfterCare program is available for New Yorkers regardless of their ability to pay or documentation status.