Corrected March 11 | The new phase of the country’s COVID-19 response, easing pandemic restrictions, is once again drawing attention to those most vulnerable to the coronavirus as states and the Biden administration adopt more relaxed, endemic-focused guidelines. 

But this time the debate around protecting immunocompromised and elderly patients is more nuanced than it was in earlier phases. Some advocates are raising concerns about ongoing risks, but others are ready to move on from a life on lockdown. 

Attitudes toward mask and vaccine mandates have pivoted in recent weeks among Democratic officials, who remained the core backers of mitigation techniques long after they receded from favor among many Republican state officials. 

The Biden administration last week unveiled a new COVID-19 exit strategy in a bid to move away from emergency operations after rolling out new masking guidance the week before. The guidance focuses on limiting hospitalizations, rather than transmission, with officials citing the wide availability and efficacy of vaccines and boosters combined with declining case rates as reasons for the approach.

The focus on mental health and substance abuse is a key component of the new phase. A recent World Health Organization report estimated that depression and anxiety rates have risen 25 percent globally, and Congress is now turning attention to mental health legislation. 

The shift comes even though the U.S. is still averaging around 1,900 COVID-19 deaths per day. But because the risk is concentrated in the unvaccinated, many immunocompromised individuals feel overlooked even as others look forward to a new normal.

Jim Gleason, a heart transplant patient and president of the patient support group Transplant Recipients International Organization, is back to eating in restaurants and attending church. His congregation restarted this past weekend its weekly get-together with coffee and doughnuts after service. 

“The majority of people are trying to live a fairly normal life,” he said of fellow TRIO members. “But being very conscientious about following those guidelines and specifically staying out of crowds, only going to a store where necessary, wearing a mask if there’s any crowd at all.”

Gleason lives in the Philadelphia metro area of southern New Jersey, where he enjoys easy access to pharmacies, vaccines and masks. He says the COVID-19 response is as good as it can be, all things considered, and the message President Joe Biden delivered during last week’s State of the Union address on moving forward safely was reassuring.

It’s a very different view from that of Dorry Segev, a transplant surgeon at Johns Hopkins Medicine conducting studies of antibody levels in transplant patients, including Gleason, and other immunocompromised individuals. Segev sees the timing of the looser CDC masking guidelines released Feb. 25 as a political move to coincide with Biden’s speech. 

“What was already a scary and frustrating place is now becoming even scarier and more frustrating,” Segev said. “And we’re not done with this thing. We still have a ton of deaths every day. We still have a ton of new cases every day.”

Segev’s research shows that many immunocompromised patients need four vaccine shots to mount a sufficient defense against the virus, with some needing five. Masking guidelines are critical in his view to allow people to work and have fun. In Segev’s case, that means operating on patients or doing the tango with his social dance group, which kept dancing through different waves of the virus.

“If you wait for the ICUs to get full and then you start wearing masks, you’ve already spread it to everybody,” he said. “That’s the whole point of prevention. Aren’t they the Centers for Disease Control and Prevention?”

Prioritizing the vulnerable

The White House says it needs more funding from Congress to protect older adults and the vulnerable, even beyond the $22.5 billion emergency supplemental request that Office of Management and Budget acting Director Shalanda D. Young sent to Speaker Nancy Pelosi last week. 

Advocates like Segev also say the CDC should issue more detailed distribution guidelines for COVID-19 therapeutics like AstraZeneca’s Evusheld, a preventative therapy to help high-risk patients avoid contracting the virus, in addition to a streamlined pathway to authorize other existing COVID-19 treatments for preventative use.

Segev has also been advocating increased antibody testing among the immunocompromised. The tests have evolved extensively from the unreliable products that flooded the market at the beginning of the pandemic, he said, and can now calculate different levels of antibodies and other things that can inform clinical decisions.

“If you actually take care of patients every day, your patients say to you, ‘Do I need to stay home? Do I need Evusheld? Is it ridiculous for me to see my family members unmasked?’ Etc., etc.,” he said. “They have real questions about real life decisions, and if we go at it blindly, that’s just stupid.”

The CDC’s revised mask guidance is raising particular concerns, especially since it focuses on hospitalizations — a lagging indicator that critics say will not alert officials in time to stop another surge. Little Lobbyists, a patient advocacy group for children with complex medical conditions, is one organization urging the CDC to reinstate stricter masking recommendations, citing in part the fact that children under 5 are still not eligible for COVID-19 vaccines.

“Only once case counts and transmission rates have dropped and universal vaccines are available will the pandemic end,” the group wrote. “Until that time, all individuals, including people with disabilities, have a right to fully participate in their communities without putting their health and lives at risk.”

Parity on a new normal

But older adults and immunocompromised individuals have also been subject to some of the strictest precautions, whether they want to be or not. Nursing homes went under lockdown during the height of the pandemic and only began allowing frequent visits last November.

Aging services provider group LeadingAge is calling on the Department of Health and Human Services to give “parity” to older adults by loosening restrictions on health care settings like nursing homes.

“Our nation’s elders have been subjected to unequal mitigation measures based solely on their place of residence,” President Katie Smith Sloan wrote in a letter. “As COVID-19 measures in surrounding communities have gradually allowed for more freedom and autonomy, long-term care settings have remained under the grip of conservative measures.”

The difficulty of walking the tightrope between too many restrictions and too few is not lost on Gleason, who remembers the first time he read an article arguing for learning to live with the virus.

“That’s easy to write about, easy to say, as long as it’s not your family that’s got somebody dying from it,” he said.

But he also misses seeing people. When a work conference in Seattle was recently canceled over the lack of in-person attendees, Gleason also lost the chance to reconnect with the nurse who helped coordinate his transplant 28 years ago. 

In the meantime, little things like coffee and doughnuts are offering a small sense of normalcy to him and the rest of his congregation.

“Maybe, we’re coming out the other end of this tunnel,” he said, “and the light that we saw really is the sunlight and not an engine headed at us.”

This report was corrected to accurately describe Evusheld.