Iesha White is so fed up with the U.S. response to covid-19 that she鈥檚 seriously considering moving to Europe.
鈥淚鈥檓 that disgusted. The lack of care for each other, to me, it鈥檚 too much,鈥� said White, 30, of Los Angeles. She has multiple sclerosis and takes a medicine that suppresses her immune system. 鈥淎s a Black disabled person, I feel like nobody gives a [expletive] about me or my safety.鈥�
The Centers for Disease Control and Prevention has a strict definition of who is considered , such as cancer patients undergoing active treatment and organ transplant recipients. Still, millions of other people are living with that also make them especially susceptible to the disease. Though vulnerability differs based on each person and their health condition 鈥� and can depend on circumstances 鈥� catching covid is a risk they cannot take.
As a result, these Americans who are at high risk 鈥� and the loved ones who fear passing along the virus to them 鈥� are speaking out about being left behind as the rest of society drops pandemic safeguards such as masking and physical distancing.
Their fears were amplified this month as several , including the leaders of California and New York 鈥� places that were out front in implementing mask mandates early on 鈥� moved to lift such safety requirements. To many people, the step signaled that 鈥渘ormal鈥� life was returning. But for people considered immunocompromised or who face high risks from covid because of other conditions, it upped the level of anxiety.
鈥淚 know my normal is never going to be normal,鈥� said Chris Neblett, 44, of Indiana, Pennsylvania, a kidney transplant recipient who takes immunosuppressive drugs to prevent his body from rejecting his transplanted organ. 鈥淚鈥檓 still going to be wearing a mask in public. I鈥檓 still probably going to go to the grocery store late at night or early in the morning to avoid other people.鈥�
He is especially concerned because his wife and young daughter recently tested positive for covid.
Even though he鈥檚 fully vaccinated, he鈥檚 not sure he is protected from the virus鈥檚 worst outcomes. Neblett participates in a tracking transplant recipients鈥� immune response to the vaccine, so he knows his body produced only a low amount of antibodies after the third dose and is waiting on the results of the fourth. For now, he鈥檚 isolating himself from his wife and two kids for 10 days by staying in his second garage.
鈥淚 told my wife when covid first happened, 鈥業 have to make it to the vaccine,鈥欌�� he said. But learning the vaccine hasn鈥檛 triggered an adequate immune-system response so far is crushing. 鈥淵our world really changes. You start wondering, 鈥楢m I going to be a statistic? Am I going to be a number to people that don鈥檛 seem to care?鈥欌��
Scientists estimate that almost meet the strict definition of having weakened immune systems, but researchers acknowledge that many more chronically ill and disabled Americans could be severely affected if they catch covid.
By summer 2021, scientific evidence indicated that immunocompromised people would likely benefit from a third shot, but it took federal agencies time to update their guidance. Even then, only certain groups of immunocompromised people were eligible, leaving others out.
In October, the CDC again quietly revised its vaccine guidance to allow immunocompromised people to receive a fourth covid vaccine dose, though a recent KHN story revealed that pharmacists unaware of this change were still turning away eligible people in January.
People with weakened immune systems or other high-risk conditions argue that now is the time, as the omicron surge subsides, to double down on policies that protect vulnerable Americans like them.
鈥淭he pandemic isn鈥檛 over,鈥� said , a senior fellow working on disability and health care for , who is chronically ill and immunocompromised. 鈥淭here is no reason to believe that another variant won鈥檛 emerge. 鈥� Now is the time, as this omicron wave begins to recede, to pursue policies and interventions that protect chronically ill, disabled, and immunocompromised people so that we aren鈥檛 left behind.鈥�
Several people interviewed by KHN who are part of this community said that, instead, the opposite is taking place, pointing to a January comment by CDC Director Dr. Rochelle Walensky that implied it was 鈥渆ncouraging news鈥� that the majority of people dying of covid were already sick.
鈥淭he overwhelming number of deaths, over 75%, occurred in people who had at least four comorbidities, so really these are people who were unwell to begin with,鈥� said Walensky, when discussing a study during a that showed the level of protection vaccinated people had against severe illness from covid. 鈥淎nd yes, really encouraging news in the context of omicron.鈥�
Although the Walensky鈥檚 remarks were taken out of context, Kendall Ciesemier, a 29-year-old multimedia producer living in Brooklyn, New York, said she was disturbed by the comments.
Walensky鈥檚 statement 鈥渟ent shock waves through the disability community and the chronic illness community,鈥� said Ciesemier, who has had two liver transplants.
鈥淚t was saying the quiet part out loud,鈥� she added, noting that though it was likely a gaffe, the strong reaction to it 鈥渟temmed from this holistic feeling that these communities have not been prioritized during the pandemic and it feels like our lives are acceptable losses.鈥�
When asked by a KHN reporter at the what she wanted to convey to people who feel they are being left behind, Walensky didn鈥檛 offer a clear answer.
鈥淲e, of course, have to make recommendations that are, you know, relevant for New York City and rural Montana,鈥� she said, adding that they have to be 鈥渞elevant for the public, but also for the public who is immunocompromised and disabled. And so, that 鈥� all of those considerations are taken into account as we work on our guidance.鈥�
Although the that vaccinated people continue to wear masks indoors if they are in a place with high or substantial covid transmission 鈥� 鈥� federal officials have indicated this guidance may be updated soon.
鈥淲e want to give people a break from things like mask-wearing, when these metrics are better, and then have the ability to reach for them again should things worsen,鈥� said Walensky during a , when discussing whether CDC鈥檚 covid prevention policies would be altered soon.
But there鈥檚 no mask break in sight for Dennis Boen, a 67-year-old retiree who has had three kidney transplants. Because his community of Wooster, Ohio, already lacks a mask mandate and few residents voluntarily wear masks, he hasn鈥檛 felt comfortable returning to many of the social events that he enjoys.
鈥淚 quit going to my Rotary Club that I鈥檝e been a part of for decades,鈥� Boen said. 鈥淚 went once in the summer to a picnic outside and it was like the people who didn鈥檛 believe [in covid] or didn鈥檛 care weren鈥檛 wearing masks and they weren鈥檛 giving me any space. Therefore, it was just easier to not go.鈥�
Charis Hill, a 35-year-old disability activist in Sacramento, California, has postponed two surgeries, a hysterectomy, and an umbilical hernia repair for over a year because Hill didn鈥檛 feel safe. Delaying has meant Hill has had to take additional medications and eat only certain foods. The surgeries are scheduled for March 21, but now that California鈥檚 mask mandate has lifted, Hill is thinking about delaying the procedures again.
鈥淚 feel disposable. As if my life doesn鈥檛 have value,鈥� said Hill, who is living with axial spondyloarthritis, a chronic inflammatory disease, and takes immune-suppressing medication. 鈥淚 am tired of constantly being told that I should just stay home and let the rest of the world move on.鈥�