Cori Bush, St. Louis Health Officials Underscore Need to Study Long COVID, Better Fund Treatment Options
WASHINGTON, D.C. — Today, Congresswoman Cori Bush (MO-01) and Congresswoman Pramila Jayapal (WA-07) led 17 of their colleagues in a letter to the U.S. Department of Health & Human Services (HHS) Secretary Xavier Becerra, Centers for Disease Control and Prevention (CDC) Director Rochelle P. Walensky, and Centers for Medicare and Medicaid Services (CMS) Administrator Chiquita Brooks-LaSure urging the leaders of the nation’s leading federal health agencies to address the lack of health monitoring and treatment funding for children and young people suffering from long COVID cases. Specifically, the two lawmakers implored the country’s top health leaders to make drastic improvements in the monitoring of children with COVID-19 infections, in addition to making all treatment options affordable and accessible to every patient.
“We urge the Department of Health and Human Services to take immediate action to improve the healthcare system to support and monitor children as the long-term effects of COVID-19 continue to harm them,” the members wrote. “The impact of potentially millions of children becoming permanently impaired from COVID-19 will have unforeseeable consequences unless policymakers immediately intervene. Given that human life and health are at risk, it is imperative that HHS remain a consistent and reliable steward of public health that presents a comprehensive, rapid federal response to controlling the spread of COVID-19.”
“Over the two-plus years of the pandemic, we have discovered a lot about the COVID-19 disease process,” said Dr. Alexander Garza, co-lead of the St. Louis Metropolitan Pandemic Task Force. “However, there is still much that we don’t know about the long-term effects from infection, particularly in children. Because of the potential for life-long impacts, it is imperative to develop systems to surveil for long-COVID syndromes in children as well as fund research and access to effective treatments.”
“After being diagnosed with COVID-19 in December in 2020, I went from being an active healthy person to barely able to get out of bed for 6 months,” said Alderwoman Dr. Megan Ellyia Green (Ward 15). “I can’t even begin to imagine what this illness would’ve done to a child’s body. Over a year later I still have debilitating nerve pain, headaches, insomnia and extreme thirst. And I’m not alone. That’s why I’m particularly concerned with what this might mean for children. Our healthcare system and workforce are not prepared for the magnitude of longhauler cases - I join Congresswoman Bush in requesting action from our country’s top health officials on this urgent issue.”
“Long COVID is a major issue for adults, amongst other post-acute COVID-19 sequelae, throughout America,” said Dr. Leonard Weinstock, a St. Louis-based COVID-19 researcher. “After a COVID-19 infection, the risk for a multisystemic illness–which can lead to disability and poor job performance–is great. This may become our second pandemic.”
“About one-fifth of individuals who test positive for COVID-19 find themselves continuing to experience at least one symptom more than a month later,” says Dr. Mati Hlatshwayo Davis, Director of Health for the City of St. Louis. “As the SARS-CoV-2 virus has disproportionately impacted our Black community, it can also feel the effects of the long-term symptoms, including ongoing fatigue or difficulty concentrating. Post-COVID-19 treatment and research is being conducted at facilities across the country. I encourage anyone who has tested positive to speak to their doctor about ongoing symptoms.”
Specifically, the members of Congress are calling on the administration to:
- Immediately issue guidance to local, state, and federal public health officials emphasizing the need for better health monitoring of children during and after a COVID-19 infection.
- Make data related to children’s health and COVID-19 available on the CDC website.
- Remove any cost barriers to patients seeking post-COVID monitoring and care.
- Use all available authorities, including march-in rights, to make drugs needed by those suffering from COVID-19 long-term effects available to everyone.
The letter comes one month after the Centers for Disease Control and Prevention published and released a study indicating that COVID-19 infections in children may be linked to lifelong health consequences, including diabetes.
Throughout the COVID-19 pandemic, Congresswoman Bush has been at the forefront of both local and national efforts to ensure equitable and affordable access to the best treatments possible. In St. Louis, she pushed Missouri Governor Parson to request federal COVID-19 assistance, ultimately succeeding in helping to secure the assistance of federal medical personnel amidst hospital staffing shortages in the region during the Omicron surge.
In January, Congresswoman Bush also joined her colleagues in urging the Biden Administration to expand access to rapid testing and remove financial and logistical barriers to access for the duration of the pandemic.
The letter is co-signed by Reps. Jamaal Bowman (NY-16), Barbara Lee (CA-13), André Carson (IN-07), Alexandria Ocasio-Cortez (NY-14), Sheila Cherfilus-McCormick (FL-20), Ilhan Omar (MN-05), Yvette Clarke (NY-09), Mark Pocan (WI-02), Mark DeSaulnier (CA-11), Ayanna Pressley (MA-07), Jesús “Chuy” García (IL-04), Michael San Nicolas (Guam-AL), Jahana Hayes (CT-05), Darren Soto (FL-09), Mondaire Jones (NY-17), Bonnie Watson Coleman (NJ-12), and Ro Khanna (CA-17).
A full copy of the letter can be found here or below.
Dear Secretary Becerra, Director Walensky, and Administrator Brooks-LaSure:
We write to express our concerns regarding the staggering long-term health effects of COVID 19, particularly on children under 18 years old. Policymakers, parents, and health officials alike have been alarmed by recent research published by the Centers for Disease Control and Prevention (CDC) that indicates children and adolescents who become infected with COVID-19 are at increased risk of receiving a new Type 1 diabetes diagnosis. We urge the Department of Health and Human Services to take immediate action to improve the healthcare system to support and monitor children as the long-term effects of COVID-19 continue to harm them.
We are currently in the midst of a historically unprecedented threat to life, health, and safety as we head into the third year of a deadly pandemic. The U.S. reported 1.5 million new cases in a single day on January 11, adding to the staggering 78 million positive cases and over 915,000 preventable deaths reported since March 2020. In St. Louis, our communities are grappling with the impact of a nearly 40 percent peak positivity rate that threatens to disrupt every sector of our local economy. Children in particular have faced tremendous obstacles while navigating the pandemic, ranging from the tragic loss of parents and caregivers, difficult school closures, and the constant threat to life and health.
We urge the Department of Health and Human Services to take the following actions:
1. Immediately issue guidance to local, state, and federal health officials emphasizing the need for drastically increased health monitoring of children during and after a COVID-19 infection, and to make data available on the CDC website.
Until October 29, 2021, children aged 5 through 11 were unable to rely on the protection of vaccines, despite the reopening of schools and workplaces in August 2021 and children under 12 could not be fully vaccinated and protected from COVID-19 until at least November 19, 2021—months after the majority of schools reopened in accordance with CDC K-12 guidance. Currently, children under 5 cannot receive the vaccine, rendering them extremely vulnerable while the Omicron variant tears through our communities unfettered. According to the American Academy of Pediatrics, nearly 12 million children have tested positive for COVID-19 since the onset of the pandemic.
Since the first week of September 2021—directly corresponding with school reopenings—there have been over 7 million additional positive child COVID-19 cases. This data is particularly alarming in light of the long-lasting implications of this illness being discovered nearly every day. As you know, long COVID is becoming an increasingly concerning phenomena for patients around the world who are still dealing with the devastating impact of COVID-19, months or even years after being infected. Researchers conservatively estimate that between 10 and 30 percent of people who get COVID-19 will suffer from long COVID symptoms.
Based on these staggering numbers of children exposed to COVID-19, we ask that the CDC release detailed guidance for the monitoring of children’s health during and after the pandemic.Further, we urge the CDC to ensure this guidance provides for adequate health monitoring of children for Type 1 diabetes, long COVID, and other conditions associated with COVID-19 as they are discovered.
2. Remove cost barriers to post-COVID monitoring and care.
Guidance from the CDC on best practices for increased monitoring of children during and after the pandemic is necessary but due to the entrenched inequities in our health system is not sufficient to protect all children. We urge CMS to remove all barriers to this care such as cost, geographic location, and socioeconomic status. Centering health equity in post-COVID monitoring and care is crucial to recovery from the pandemic.
3. Use all available authorities, including march-in rights, to make drugs needed by those suffering from COVID-19 long-term effects available to everyone.
While medical experts are still discovering the extent of long COVID, the CDC has confirmed coronavirus can impair numerous organs, including the heart, lungs, skin, kidneys, and brain. Studies suggest that long COVID affects children with the same wide and disturbing range of symptoms as adults, from heart palpitations and “brain fog” to difficulty breathing and painful rashes. Approximately half the children treated at the Kennedy Krieger Institute’s long COVID clinic in Baltimore suffer from anxiety or depression. It is clear that COVID-19 increases the need for long-term healthcare services and medications. However, the extremely high cost of medications like insulin prevent untold numbers of long COVID patients from accessing adequate medical care, particularly patients with no insurance.
We urge HHS to make overpriced medications needed by these patients affordable by using the existing authorities including march-in rights under the Bayh-Dole Act and compulsory licensing under Title 28, U.S. Code Section 1498. The pharmaceutical price gouging crisis will only worsen as more people require medication to treat the long-term effects of COVID-19 making it more important than ever to reign in drug prices. In cases where march-in rights and compulsory licensing are not adequate, such as insulin, we urge HHS to develop a public manufacturing option for those drugs.
The impact of potentially millions of children becoming permanently impaired from COVID-19 will have unforeseeable consequences unless policymakers immediately intervene. Given the extremely high stakes–human life and health–it is imperative that HHS remain a consistent and reliable steward of public health that presents a comprehensive, rapid federal response to controlling the spread of COVID-19. Beyond preventing the spread of disease, it is within the purview of the Centers for Disease Control to help communities mitigate the damaging effects the virus leaves in its wake. Working in concert, CMS must assure that these monitoring and care services are available to all regardless of ability to pay. Finally, HHS must ensure that if health problems are uncovered thanks to increased monitoring, that patients can afford the medications needed to treat their conditions.
While we were relieved to see the Department of Health and Human Services officially declare long COVID a disability under the Americans with Disabilities Act (ADA) in July 2021, there is considerable work to be done to support this newly-disabled population. Lawmakers, local and state health officials, and impacted advocates alike are eager to work closely in coordination with the HHS to finally bring an end to this pandemic and support those who have been irreparably harmed by this virus.
Thank you for taking our recommendations into consideration. We look forward to supporting and bolstering HHS, CDC, and CMS’s efforts to implement a comprehensive federal approach to this deadly public health emergency and its long-term effects.
CORI BUSH, Member of Congress
PRAMILA JAYAPAL, Member of Congress
Congresswoman Cori Bush sits on the House Judiciary and Oversight Committees, serves as the Progressive Caucus Deputy Whip, and proudly represents St. Louis as a politivist in the halls of the United States Congress.