Advocates Weigh In as Patients, Doctors, and Scientists Learn More About Post-COVID Illnesses

On August 13th, members of the COVID-19 Working Group of New York City, of which the Coalition for the Homeless is a member, sent a letter requesting a meeting with the new Commissioner of the New York City Department of Health and Mental Hygiene (DOHMH), Dr. Dave A. Chokshi, and the President of NYC Health + Hospitals (H+H), Dr. Mitchell Katz, to discuss recommendations regarding post-COVID-19 care and the chronic disease impact of the pandemic.

Chronic Disease and COVID-19

The Working Group has identified two areas of concern requiring City public health intervention: the impact of the pandemic on those living with chronic conditions, and the need for short- and long-term clinical care for people infected with the novel coronavirus. Increasing evidence shows that people with chronic conditions are vulnerable to more serious illness if infected with the virus, and that many suffer a wide array of post-virus conditions affecting many organs and systems of the body.  

The United States Centers for Disease Control and Prevention (CDC) recently updated the list of conditions placing people at increased risk from COVID-19:

People of any age with the following conditions are at increased risk of severe illness from COVID-19:

– Cancer

– Chronic kidney disease

– COPD (chronic obstructive pulmonary disease)

– Immunocompromised state (weakened immune system) from solid organ transplant

– Obesity (body mass index [BMI] of 30 or higher)

– Serious heart conditions, such as heart failure, coronary artery disease, or cardiomyopathies

– Sickle cell disease

– Type 2 diabetes mellitus

COVID-19 is a new disease. Currently there are limited data and information about the impact of underlying medical conditions and whether they increase the risk for severe illness from COVID-19. Based on what we know at this time, people with the following conditions might be at an increased risk for severe illness from COVID-19:

– Asthma (moderate-to-severe)

– Cerebrovascular disease (affects blood vessels and blood supply to the brain)

– Cystic fibrosis

– Hypertension or high blood pressure

– Immunocompromised state (weakened immune system) from blood or bone marrow transplant, immune deficiencies, HIV, use of corticosteroids, or use of other immune weakening medicines

– Neurologic conditions, such as dementia

– Liver disease

– Pregnancy

– Pulmonary fibrosis (having damaged or scarred lung tissues)

– Smoking

– Thalassemia (a type of blood disorder)

– Type 1 diabetes mellitus

The CDC also noted that “children who have medical complexity, who have neurologic, genetic, metabolic conditions, or who have congenital heart disease might be at increased risk for severe illness from COVID-19” as well. Further, the agency recently published the results of telephone interviews with adults who tested positive for the virus that causes COVID-19 (SARS-CoV-2) at outpatient clinics in April, May, and June, which concluded:

COVID-19 can result in prolonged illness even among persons with milder outpatient illness, including young adults.

COVID-19 “Long-haulers”

Self-defined as COVID-19 “long-haulers,” patients experiencing a wide array of symptoms for months have organized support groups and other resources for those experiencing continuing illness. They have also developed a patient-led survey and analysis showing that more than half of “long-haulers” had pre-existing conditions (58 percent) and that ongoing post-COVID-19 problems may include vascular, cardiac, equilibrium, gastrointestinal, lymphatic, neurological, pulmonary, sensory, skin, and other symptoms as well as ongoing, often debilitating fatigue.

Science and Treatment

As the experience of patients has informed the medical community, scientists and clinicians are beginning to document the problem and establish clinical support for them. A number of reports covering this subject have been published in recent months, and this article from the American Association for the Advancement of Science provides a helpful examination of the subject and the history of similar post-virus conditions, including links to recent reports examining the impact on the heart among otherwise healthy individuals and neurologic complications. Citing the work of several experts, the article highlights the chronic and debilitating symptoms of post-COVID-19 illnesses, and emphasizes the need to pin down their respective causes:

Michael Marks, an infectious disease specialist at the London School of Hygiene & Tropical Medicine who’s helping lead the U.K. survivor study, says he’s not too surprised at emerging aftereffects. “What we’re experiencing is an epidemic of severe illness,” he says. “So therefore, there is an epidemic” of chronic illness that follows it.

The most bedeviling and common lingering symptom seems to be fatigue, but researchers caution against calling it chronic fatigue syndrome. That’s “a specific diagnosis,” Marks says. “You might have fibrosis in the lungs, and that will make you feel fatigued; you might have impaired heart function, and that will make you feel fatigued.” Trying to trace symptoms to their source is critical to understanding and ultimately managing them, he says.

Mt. Sinai hospital in New York City has established a Center for Post-COVID Care, including a patient registry to help track patient experience. H+H is opening three COVID-19 Centers for Excellence in communities hard hit by the pandemic: Bushwick in Brooklyn, Tremont in the Bronx, and Jackson Heights in Queens. The centers are expected to open in September and will serve several neighborhoods in each borough. The clinics will work to help those at high risk for contracting the virus as well as those already infected who may experience blood clots, cardiac symptoms, problems breathing, and mental health needs.

Advocates Weigh In

The COVID-19 Working Group’s letter requests that New York City’s health leadership establish systems and programs to ensure:

  • public health data tracking systems for public health surveillance to monitor chronic conditions that increase vulnerability to COVID-19, post-COVID-19 health status, and the prevalence of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) among COVID-19 “long haulers.”
  • research, development, and publication of clinical guidelines for the assessment, diagnosis, monitoring, and treatment of post-COVID-19 symptoms based on the best available evidence-based clinical knowledge.
  • provision of comprehensive clinical education with continuing education credits on post-COVID-19 conditions, impact of the virus on those with chronic illnesses, and clinical management of both.
  • development and wide distribution of culturally appropriate consumer-facing public health education materials to foster public awareness of risk factors for novel coronavirus infection, the impact of COVID-19 on health for those recovering, and services offered by the COVID-19 Centers for Excellence.
  • development of a comprehensive peer support and education program within each Center for Excellence to facilitate patient education about disease management and health.
  • provision of tele-health services to enable patients to access technology and health care services and supports in order to reduce exposure and accommodate their needs.

Next Steps

As the scientific community continues to track the insidious novel coronavirus, and as clinicians serving those experiencing chronic conditions amidst – and as a result of – the pandemic continue to learn more about the long-term effects, we hope to report again on these critical matters, including the City’s response to the COVID-19 Working Group’s recommendations. More than 1,400 homeless New Yorkers have tested positive for COVID-19 and many will require support as they recover, whether from mild or serious illness. As new clinical support becomes available, we will provide updates regarding health and recovery for those infected with the virus, and tips on where to get help.

Update August 19th: For a long-hauler update, see this story by Ed Yong in The Atlantic.