Region: NYC

While many try to move on from the COVID-19 pandemic, the virus lingers on for some. Some people who had COVID developed a chronic disorder that affects the entire body, known as Long COVID. According to CDC data, roughly 17 million adults and 1 million children experienced Long COVID in 2022. With more than 200 identified symptoms, Long COVID remains poorly understood and overlooked in medicine.  

Recognizing the urgent need for more information, NYHealth grantee Long COVID Justice (LCJ) is increasing medical information about Long COVID and advocating for people experiencing Long COVID and other chronic illnesses.  

LCJ used NYHealth funding to conduct a needs assessment of people with Long COVID focused on what is often overlooked by public institutions: social needs, care needs, and stigma. LCJ partnered with Long COVID advocacy groups, grassroots organizations, clinics, and providers to conduct outreach to people living with Long COVID, focusing on those disproportionately affected and whose voices have largely been left out, including people living with HIV/AIDS, young people living with chronic illnesses, and transgender, and gender non-conforming people.  

“This needs assessment project is also an organizing project; we’re building relationships with and amongst community-based organizations and patient populations,” said Emi Kane, LCJ Co-Director. “We’re creating a really solid foundation for future work.”  

“We are also very involved in elevating patients’ voices and narrative change so that people get a better understanding of the lived experience of people living with Long COVID and associated conditions,” explained Gabriel San Emeterio, LCJ Senior Fellow and Co-Founder.  

Participants reported health care providers sometimes overlooked COVID as a significant health event, resulting in underreporting on electronic medical records and affecting care and treatment. By providing additional information and resources to providers and patients, LCJ hopes to improve care plans and broaden community awareness for patients.  

LCJ developed a fact sheet with basic information about COVID and Long COVID that helps people with a misunderstood condition navigate health care systems and advocate for themselves. Additionally, LCJ partnered with The Sick Times to help increase awareness about COVID and Long COVID. The partnership used evidence-based resources and reporting to address misinformation in the community. 

LCJ is hopeful that Long COVID will attract more resources amid the growing call for a comprehensive understanding of what patients with complex chronic illnesses are experiencing. “There is a long history of [complex chronic illnesses] being underfunded, misunderstood, and overlooked. We are using the latest crisis to draw attention to much larger problems that have existed in society for a long time,” said San Emeterio. 

To continue building momentum, LCJ is launching an action plan with policy recommendations and outlines for implementation by engaging community networks. The action plan will include a publicly available, easy-to-use tool that provides suggestions for improving care systems to support people living with Long COVID.  

Learn more about Long COVID Justice’s efforts here. 

In early 2011, several students at Bronx elementary school P.S. 51 started reporting to the school nurse that they had headaches.

Some P.S. 51 parents had noticed many assorted illnesses among children at the school over the years, including stomach pain and coughing, but no one knew what to make of the trend. In addition, construction had recently started to build 10 new high-rise condominiums on the same block, and some parents and teachers found the noise and dust were making classrooms unusable or causing breathing problems. Parents and teachers questioned whether the school would be relocated so that students and staff would not have to come to this unsafe school environment every day.

The school building’s lease was scheduled to expire that same year, and the renewal process required an assessment of toxins on the property. The Department of Education (DOE) began to perform air tests at the school after hours, starting in January of 2011. The testing revealed dangerous levels of toxins, well in excess of State standards, which were likely left over from chemicals used in the school building’s past as a lamp factory. The factory had left behind trichloroethene, or TCE, a chemical which can cause cancer and other long-term health effects. The DOE had not tested the air when it first leased the building 20 years earlier, exposing students and school staff to these toxins daily for years.

The DOE did not tell the school principal, teachers, or parents about the ongoing environmental testing or its results for six months, while school remained in session. By the time the community learned about the air testing and toxicity, it was summer, when the DOE chose a new site for the school and released a report about the environmental hazards in the original building. The reports were too technical for community members to understand, and parents were left confused, fearing for their kids’ health and safety.

Marisol Carrero’s son, Brandon, attended P.S. 51 before and after the school was relocated. “In October, we were still trying to figure out what the environmental reports meant” about P.S. 51, says Ms. Carrero. “The DOE didn’t explain to us what the reports were saying or what they meant for us—what the toxin was, or what the health concerns would be for our kids.”

“DOE was under no obligation to inform the school community about being in the process of doing environmental testing, so they didn’t,” says Allison Manuel, Lead Community Organizer at Northwest Bronx Community and Clergy Coalition (NWBCCC), a community group that many P.S. 51 parents joined. “You don’t want to do multiple tests as if you can test the problem away before you inform the people who are directly impacted by these toxins.”

While the P.S. 51 community struggled to get information and understand how to protect their kids’ health, New York City’s School Construction Authority was implementing an aggressive plan to relieve overcrowding in public schools by establishing 56 new school buildings over 5 years. Because of the scarcity of affordable, clean land in New York City, schools are often sited on property likely to be contaminated with toxins, like the former lamp factory that became P.S. 51. Because of these past uses, the school sites could be contaminated with toxins such as lead, arsenic, and a range of carcinogenic compounds.

Communities across New York City continue to face difficulties establishing safe and healthy school environments, including issues with expansion, relocation, construction, and toxic lighting. For the previous five years, New York Lawyers for the Public Interest (NYLPI) had been working with community boards at a number of New York City schools to empower parents, community members, and elected officials to get information and ensure school buildings are safe, healthy learning environments. However, the scale of the problem meant there was more work to be done, and NYLPI had reached only a fraction of the contaminated sites proposed to become schools.

With support from NYHealth, NYLPI expanded its work on healthy schools and reached more districts where new school sites were being considered, including P.S. 51, to provide assistance and helpful materials. NYLPI instituted ongoing trainings for community boards, parents, teachers, elected officials, and other school community members to help them learn to navigate the complex school siting system and advocate for the information they need. To reach more schools, NYLPI also developed and distributed a series of practical tool kits that explain how community members can get involved in safe and healthy school siting, construction, and renovation practices.

NYLPI staff met with Ms. Carrero, NWBCCC, and other P.S. 51 parents and community members to help them advocate for a healthy school environment and identify ways to get involved in the school siting and environmental testing processes. NYLPI provided the P.S. 51 community with educational materials, including the tool kits, and helped decode the environmental reports so that community members could better understand what toxins were in the air at P.S. 51 and what the health implications could be for students and teachers.

“This [original location] was not a building that should have ever been used as a school,” says Mark Ladov, Staff Attorney at NYLPI. “We wanted to help provide parents with a realistic sense of the level of health risks.”

New York City Council members subsequently reached out to NYLPI for recommendations on best practices for healthy school siting, construction, and renovation. NYLPI provided Council members with the educational materials it had developed under its NYHealth-funded project, including the tool kits designed to enable community involvement. In early 2015, the Council passed new legislation, signed into law by Mayor Bill de Blasio, designed to prevent future situations like P.S. 51. The law requires the DOE to inform parents and school employees within seven days of any environmental test results that show potential health threats in public schools or proposed sites. It also requires the DOE to publish all environmental inspections to its website, and to publish biannual reports for the City Council and the public summarizing the test results of every environmental inspection and site assessment, as well as plans to mitigate risks.

“I’ve spoken to so many parents, and I can’t tell you how relieved they are that something like this law exists out there,” says Ms. Carrero.

“With such a lack of transparent information, it left room for fear to fill the vacuum,” says Mr. Ladov. “Parents were rightfully concerned. An important part of our role [at NYLPI] was to be on their side, and take this energy and frustration to help the next set of parents down the line.”

Having spent the majority of her adolescence on the streets and involved in the criminal justice system, Teisha battled depression and a growing sense of hopelessness at the age of 18.

In an effort to establish some stability and support in her life, she rushed into a marriage with a man she met at a homeless shelter. The relationship soon turned abusive, however—forcing Teisha back onto the streets and into renewed encounters with the justice system. After one particular arrest, Teisha was mandated to the Center for Alternative Sentencing and Employment Services (CASES), an innovative alternative sentencing program in New York City.

Although vivacious and remarkably resilient, Teisha struggled with undiagnosed mental illness. CASES staff identified symptoms in Teisha and referred her to the Nathaniel Clinic for treatment. The first of its kind in New York State, the Nathaniel Clinic is uniquely designed to serve youth and adults who have mental illness and are involved with the criminal justice system. Operated by CASES, this State-licensed clinic, located in Central Harlem, began offering services in September 2014 with support from an NYHealth grant.

Prior to visiting the Nathaniel Clinic, Teisha had never received any mental health treatment. Once at the clinic, she underwent a comprehensive clinical screening and began attending regular therapy sessions to help work through the feelings of hopelessness and anxiety she had developed through years of uncertain, transient living. The Nathaniel Clinic staff also helped Teisha pursue one of her long-time dreams: going to college. A year later, Teisha—now age 20—is a student at the Borough of Manhattan Community College, where she is working toward an associate degree in science.

The Nathaniel Clinic provides services—typically unavailable at traditional clinics—that specifically address the risks faced by and needs of people involved with the criminal justice system. The clinic developed a treatment model that integrates mental health, substance use, and physical health treatment with criminal justice-related coordination and rehabilitation services to improve health outcomes and reduce recidivism. It accepts clients ages 13 years old and up from all five New York City boroughs and provides a range of services, including individual and group counseling/therapy; psychiatric evaluations; medication management; health physicals and monitoring; integrated treatment for substance use; and crisis intervention.

Despite experiencing significantly higher rates of medical, behavioral health, and substance use problems than the general population, most people involved with the criminal justice system have had extremely limited access to effective mental health treatment in the community. For many years, New York City and State officials have grappled with how to address the intersection between mental illness and criminal justice involvement.

While CASES’ primary focus is on alternatives to incarceration, it is ramping up efforts to provide its participants with greater access to evidence-based behavioral health services—a measure strongly endorsed by policymakers in both the health care and criminal justice fields.

“We have seen such a great need for mental health services every day since opening the clinic,” says Ann-Marie Louison, director of adult behavioral health programs, CASES. “The youth and adults we are treating have experienced many difficulties and present with complex histories. Many have been long disconnected from school or work and reside in neighborhoods disproportionately impacted by poverty and violence. Many also have difficult family backgrounds, struggle with substance use, and have significant past experiences of trauma—including the trauma that comes with being incarcerated,” says Ms. Louison. “Our approach to treatment not only helps clients recover, but also allows them to learn different responses when faced with challenges so as to help them avoid new crimes and other poor outcomes.”

Since opening its doors, Nathaniel Clinic has seen a growing demand for services—in its first six months of operation, the clinic has served more than 160 clients, including more than 50 young people ages 13–24. As it reaches capacity, the clinic expects to serve 400 clients annually, offering a much-needed resource for Teisha and others as they work to regain their emotional and physical health and reconnect with the community.