Iesha White is so fed up with the US response to Covid- that she has thought about moving to Europe.
“I am outraged. The lack of consideration for others, for me, is too much,” said White, aged 30, a resident of Los Angeles. She has multiple sclerosis and takes a drug that suppresses her immune system. “As a disabled black person, I feel like no one cares about my safety.”
The Centers for Disease Control and Prevention (CDC) has a strict definition of who is considered moderately or severely immunosuppressed , such as cancer patients undergoing active treatment and organ transplant recipients.
In addition, there are millions of people who live with chronic diseases or disabilities that also make them especially susceptible to disease. Although vulnerability differs according to each person and their health status -and may depend on the circumstances-, contracting Covid is a risk they cannot take.
Therefore, these high-risk Americans -and their loved ones who are afraid of infecting them with the virus- denounce that they are ignored while the rest of society abandons protection measures against the pandemic, such as the use of a mask and physical distance.
Their Fears were heightened this month when several Democratic governors, including the leaders of California and New York – who were at the forefront of implementing mask mandates from the beginning – announced an end to such safety requirements. For many, this measure meant a return to “normal” life. But it increased the level of anxiety of people considered immunosuppressed, or for whom Covid represents a high risk due to other conditions.
“I know my normal life is never going to be normal,” said Chris Neblett, 44 from Indiana, Pennsylvania , who lives with a transplanted kidney and takes immunosuppressive drugs to prevent his body from rejecting the organ. “I will continue to wear a mask in public. I will probably still go to the supermarket late at night or early in the morning to avoid other people.”
he is especially concerned because his wife and his little daughter have tested positive for Covid . Although he is fully vaccinated, he is not sure he is protected from the worst effects of the virus.
Neblett is participating in a study at the Johns Hopkins University School of Medicine tracking the immune response of transplant recipients to the vaccine, so you know your body only produced a low amount of antibodies after the third dose and you’re waiting for the results of the fourth. For now, he has isolated himself from his wife and two children for 10 days by staying in the garage.
“I told my wife when Covid appeared for the first time: ‘I have to survive until the vaccine arrives,'” he said. But learning that the vaccine has so far not triggered an adequate response from his immune system is disheartening. “Your world changes completely. You start to wonder, ‘Am I going to be a statistic? Am I going to be a number to people who don’t seem to care?’”
Scientists estimate that nearly 3% of Americans meet the strict definition of having a weakened immune system, researchers acknowledge that many more chronically ill and disabled people could be severely affected if they contract Covid.
In the summer of 2021, scientific evidence indicated that immunosuppressed people would likely benefit from a third vaccine, but federal agencies were slow to update their guidance. Even then, only certain immunocompromised groups were eligible, leaving others out.
In October, the CDC quietly revised its vaccine guidelines again to allow people with weakened immune systems to receive a fourth dose. But a recent KHN article revealed that as of January, pharmacists unaware of this change were still turning away eligible people.
People with weakened immune systems, or other high-risk conditions, argue that now is the time to strengthen policies that protect vulnerable Americans like them, now that omicron is going down.
“The pandemic is not over,” said Matthew Cortland, disability and health care specialist for Data for Progress, who suffers from a chronic illness and is immunosuppressed. “There is no reason to believe that another variant will not emerge. Now is the time, as this wave of omicron begins to recede, to look for policies and interventions that protect the chronically ill, disabled and immunosuppressed so that we are not left behind”.
Several people interviewed by KHN, who are part of this community, affirmed that it is happening to the contrary, pointing to a comment from January by Dr. Rochelle Walensky, director of the CDC, in which it was presented as “encouraging news” that the majority of people who died of Covid were already sick.
“The vast majority of deaths, more than 75%, occurred in people who had at least 4 comorbidities (when a person has various disorders), so these are really people who were already sick,” Walensky said during a television interview that showed the level of protection that people vaccinated against severe Cov disease had. id “And yes, this is really encouraging news in the context of Omicron.”
Although the CDC later reported that Walensky’s statements had been taken out of context, Kendall Ciesemier, a multimedia producer at 29 years living in Brooklyn, New York, said that those comments had bothered him.
Walensky’s statements “caused a great stir in the disabled community and chronically ill. It arose from the feeling that these communities have not been prioritized during the pandemic and make us feel as if our lives were acceptable losses”, said Ciesemier, who has undergone 2 liver transplants.
Asked by a KHN reporter at a White House press conference on February 9 what he would say to people who feel they are being left behind, Walensky did not offer a clear answer.
“Of course, we have to make recommendations that are relevant to both New York City and rural Montana,” he said, adding that they have to be “relevant to the public, but also to the immunocompromised and disabled public.” ; and therefore all these considerations are taken into account when we work on our guidelines”.
Although the CDC recommends at this time that vaccinated people continue to wear masks indoors if they are in a place with high or significant transmission of covid-including the majority part of the US, federal officials have indicated that this recommendation could be updated soon.
“We want people to be able to stop wearing masks, when the indicators improve, and then have the ability to to resort to them again in case things get worse,” Walensky said during a briefing on 10 February at the White House.
But abandoning the masks is not something that Dennis Boen, a retiree from 67 years having had three kidney transplants. Since his community in Wooster, Ohio, ended the mandatory use of face masks and few residents wear them, he does not feel comfortable attending many of the social events he used to enjoy.
“I stopped going to my Rotary Club, which I have been part of it for decades. I went to an outdoor picnic once in the summer and it was like people didn’t believe (in the coronavirus) or didn’t care that I didn’t wear masks, and I felt like they didn’t give me space,” Boen said.
Charis Hill, a 35 year old activist living in Sacramento, California, has postponed two operations, a hysterectomy and a repair of umbilical hernia, for more than a year because she did not feel safe. The delay has meant that she has to take additional medications and eat only certain foods. The surgeries are scheduled for March 21, but since California’s mask mandate has ended, she is thinking of delaying them again.
“I feel disposable. As if my life is worthless,” said Hill, who lives with axial spondyloarthritis, a chronic inflammatory disease, and takes immunosuppressive drugs. “I’m sick of being constantly told that I should stay home and let the rest of the world move on.”
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