The Biden administration is set to end the COVID-19 public health emergency at the end of the day on Thursday. Melinda Utendorf, who has fibromyalgia and was diagnosed with an immunocompromised condition after starting chemotherapy for stage 4 bile duct cancer, said the move comes as a slap in the face.
Although COVID-19 case numbers are declining, the pandemic is not over for many people with disabilities, who continue to wear masks, practice social distancing and avoid travel.
Medical experts have warned that the virus could still pose a risk to people with disabilities, especially those who may have weakened immune systems or other underlying health conditions, and advocates for the disability community worry that access to resources will become even harder once the pandemic emergency is over.
“(The disability community) is talking about it and how ridiculous it is,” Utendorf told USA Today. “People are still dying and it feels like no one cares about it at all.”
Vaccine requirement: International travelers to U.S. can skip proof of COVID vaccine, White House announces
Read more: Best travel insurance
Missing travelers at the airport: Omicron hinders travel for people with disabilities
What happens when the public health emergency ends?
According to the Centers for Disease Control and Prevention (CDC), once the COVID-19 public health emergency ends, insurers will no longer be required to waive the cost of COVID-19 testing.
Medicare-covered people with Part B will have the cost of laboratory tests covered if ordered by a health professional, but over-the-counter tests will no longer be free. State Medicaid programs must cover COVID-19 tests at no copay until September 30, 2024. After that, coverage varies by state. Private insurers will no longer be required to cover over-the-counter or laboratory tests for COVID-19 at no copay, but the Department of Health and Human Services has said it encourages private insurers to continue covering the tests.
“This puts a lot of low-income people at a disadvantage,” said Amy Gaeta, a disability rights activist and postdoctoral researcher at the University of Wisconsin-Madison who studies disabilities and technology and has nerve damage and a visible disability in one leg. “This is particularly concerning when you consider that many people with disabilities are low-income, especially if they receive disability benefits.”
The Department of Health and Human Services said access to vaccinations and certain treatments such as Paxlovid and Rajebrio will remain “largely unaffected” until the end of the public health emergency, at least for now.
White House COVID-19 response coordinator Ashish Jha said earlier this year that he expects stockpiles of COVID-19 vaccines and treatments to run out sometime this summer or fall. When that happens, Jha said, COVID-19 vaccines will continue to be available free of charge to people with public or private insurance.
When it comes to treatment, once reserves are depleted, insured patients will likely have to pay at least some of the costs out of pocket. Medicaid will continue to cover treatment costs without copayments through September 30, 2024. After that, coverage and copayments will vary by state.
“Obviously, uninsured people can’t get vaccinations or treatments for free under the normal insurance system,” Jha said. “We’re working on that plan.”
The change would also affect how the US reports COVID data, as the CDC would lose the legal authority to require all labs to report coronavirus test results.
Also this week, the Biden administration will eliminate vaccination requirements for international air travelers, a change that takes effect at 12:01 a.m. EDT on Friday.
“Given the progress made and based on the latest guidance from our public health experts, I have determined that the international air travel restrictions I imposed in October 2021 are no longer necessary,” Biden said in a statement on Tuesday.
Title 42’s expiration date is approaching: What we know about the end of the pandemic-era border policy
US COVID data reporting is changing. Here’s what you need to know.
What the end of the public health emergency means for people with disabilities
Thursday’s shift came in response to the end of the national emergency due to the virus in April. It was originally scheduled to end Thursday along with the public health emergency.
The decision to lift the pandemic emergency has drawn backlash from advocates for the disability community, a large and diverse group that the CDC estimates up to a quarter of the U.S. adult population has some kind of disability.
The Americans with Disabilities Association said in an April statement that the group was disappointed that Biden’s decision to end the national emergency “perpetuates the idea that COVID-19 is no longer a threat.”
The World Health Organization has also updated its language about the virus, saying last week that it no longer considers COVID-19 a global health emergency.
“The abrupt end of the national emergency is the first step toward reducing resources and mitigation efforts for those still impacted by COVID-19,” AAPD CEO and president Maria Town said in a statement. “We are deeply frustrated and disappointed by the administration’s continued denial of the ongoing harm and long-term impacts of COVID-19, especially on people with disabilities, older Americans, and communities of color.”
“Make it clear” that people with disabilities are being excluded
Shannon Rosa said while the rest of the world seems to be trying to forget about the pandemic, for her family, the virus is still often top of mind.
Rosa’s son, Leo, has autism and can’t wear a mask for extended periods of time for sensory reasons, so she has largely avoided traveling during the pandemic. When she does go out, she looks for outdoor places and tries to go when there are fewer visitors, especially now that mask-wearing is rare.
“We know that people with disabilities are generally not on society’s radar, but this case makes that very clear,” said Rosa, senior editor of the Thinking Person’s Guide to Autism.
Although Leo is not at high risk, she worries about the unknown side effects of the virus and how it might affect her son, and she says Leo won’t fly until the number of cases is steadily reduced, which severely limits the family’s travel options.
“We still don’t know why there are so many co-occurring conditions (with autism), and we don’t necessarily know if he’s more susceptible to a new disease like COVID, especially one that we know may have unexpected long-term effects,” Rosa said.
A 2022 CDC study estimated that 20% of COVID survivors between the ages of 18 and 65 experienced long COVID, a chronic illness that is considered a massively disabling event. The course and severity of the disease varies, but post-exertional fatigue and brain fog are the two most common symptoms.
Utendorf said she recently started traveling again, and last month took her first flight since 2020 to Virginia Beach, Virginia. She said she was a little nervous seeing so many people around her without masks, but the chance to see the ocean again was worth it.
“I didn’t want to be the one to lose my temper and yell (for not wearing a mask). It was my choice to travel,” she said. “I just put my mask on, sat quietly in my seat and tried to avoid contact with people as much as possible.”
Utendorf tested negative for the virus after returning home and plans to visit New York with his mother and a friend later this month.
“I travel a lot now because I want to make sure I’m involved,” she said.
What public health experts say
Although the pandemic is still ongoing, there’s “no question” that the number of COVID-19 cases in the U.S. is improving, according to David Weber, associate chief medical officer and medical director of infection prevention at the University of North Carolina Medical Center and vice president of the Society for Healthcare Epidemiology of America.
The CDC reported that the weekly COVID-19 death toll reached 1,109 as of May 3, down from more than 23,600 the week of Jan. 13, 2021. More than 77,000 cases were reported during the week, down from a peak of 5.5 million in January 2022. Hospitalization trends are also declining, with the seven-day average declining from a peak of 21,525 in January 2022 to 1,349 as of Monday.
Still, Weber noted that COVID-19 “remains a huge problem,” with an average of more than 100 people dying from the virus each day in the U.S. He expects the virus to remain among the top five causes of death in the U.S. this year.
“It’s still really impacting the elderly, especially the younger generation who haven’t been vaccinated and have multiple comorbidities,” he said.
Dr. Weber, 72, said he advises his patients with severely compromised immune systems to continue wearing masks, and that he himself continues to wear one in public because of his age.
“That’s a personal decision,” he said. “If people want to, we need to let them make that decision and recognize that even though the risk of COVID-19 has dropped dramatically, it’s still there and it’s still a significant cause of death.”
David Eisenman, director of the University of California, Los Angeles Center for Public Health and Disaster Prevention, said people with comorbidities or weakened immune systems, as well as those over 65 who are looking forward to traveling, should ask their doctor whether they can bring along the prescription antiviral drug paxlovid, which can help those at risk of severe illness avoid a bad outcome.
He too encourages wearing masks, saying an N95 or KN95 mask worn properly can reduce an individual’s risk.
The new variants “appear to spread more easily but not be more severe,” Eisenman said in an emailed statement. “Booster doses will cover these new variants, so be sure to get them, and consider getting a second booster dose if you’re eligible.”
Weber said it’s still unclear what threat COVID-19 will pose in the future. The world may never see another major variant emerge. Or a variant may emerge that leads to a new wave of infections.
“We haven’t beaten COVID-19 yet. It’s not gone,” he said. “It’s not a question of if we’ll see a new pandemic, but when.”
Best Cities for Travelers with Disabilities: These three U.S. destinations rank among the best.
Learn more:
You can follow USA TODAY reporter Bailey Schultz on Twitter Follow Subscribe here to our free Daily Money newsletter, which will deliver personal finance tips and business news every Monday to Friday.