Sen. Brad Hoylman has introduced legislation to establish a COVID-19 health registry for New York in order to monitor the long-term effects of coronavirus.
Modeled after the World Trade Center Health Registry, which was used to monitor the long-term health of people directly exposed to the 9/11 World Trade Center disaster, this new COVID registry (S.5927) would track information about “long-haul” COVID symptoms.
These long-term symptoms are affecting about 1 out of 10 people who have contracted the virus and survived, and the phenomenon is still being studied by researchers.
“It’s estimated that more than 10 percent of COVID-19 infections will develop into ‘Long COVID,’ the symptoms of which can include lingering respiratory problems, difficulty concentrating and potentially long-term disabilities,” said Hoylman, D-Manhattan. “We owe it to New Yorkers afflicted to follow their long-term health outcomes to develop strategies to help them cope with this syndrome and understand the scope of this growing public health concern.”
The program would be voluntary, not required to be filled out by those who have contracted COVID-19 themselves but highly suggested, so more information can be gathered on the long-term effects of COVID-19.
Mario Cilento, president of the new York AFL-CIO, said a registry such as the one being proposed can help monitor the health, mental health, and other effects that COVID-19 has on working people who have borne the brunt of the pandemic.
“It will allow us to better prepare for any future manifestations of this disease or health care problems,” Cilento said. “This is critical in determining how to treat these conditions and pay for medical care, lost wages and other costs associated with COVID-19, something we clearly were not prepared for at the onset of the pandemic.”
Any findings made would be released in an annual report prepared by the New York State Department of Health. These reports would include information surrounding the findings of surveys and studies to recommendations made by the DOH on the actions that should be taken next by the state.
Hoylman said his bill takes special measures to ensure data is produced that will help communities of color that have been hit hardest by this disease. In its first year, the registry’s report would have a special focus on enrollees belonging to racial or ethnic groups that have been disproportionately impacted by the COVID-19 pandemic.
By enrolling a diverse cross-section of New Yorkers, the registry will be able to shed light on the racial and ethnic disparities in the pandemic’s impact, supporters of the bill say.
All registry information would be kept confidential by DOH and would not be disclosed except for a permitted purpose.
Currently, there is no Assembly version of the bill. The Senate bill has 22 co-sponsors.
“The long-term impacts of infection with SARS CoV-2 are not yet well understood,” said NYU Langone’s Lorna Thorpe, director of the Division of Epidemiology in the Department of Population Health, NYU Langone. “At this moment, we have a critical window of opportunity to learn about the health needs of people experiencing prolonged physical symptoms and mental health issues in order to develop strategies to prevent and address them.”