Immunocompromised Arizonans and masks
As rules ease, some feel at higher risk for COVID
Jordan Smith has undergone three surgeries to treat brain cancer.
But when the COVID-19 pandemic erupted last March, the 39-year-old from Phoenix said he remained “nonchalant.”
“This is not my first dance with death,” Smith, who works for the state government, remembers telling a coworker.
Still, he took precautions to ensure that he wouldn’t put others at risk of contracting the deadly new coronavirus by making sure he wore a mask wherever he went and received the vaccine when it became available.
“I just remember thinking, I have got to do whatever I can to stop this from getting any further,” he said.
Now that the CDC’s mask advisory for unvaccinated individuals has been lifted, as have mask mandates in cities, counties and many private businesses, Smith worries that the virus will spread and put others at risk, especially other immunocompromised individuals who haven’t received the vaccine. Arizona is in the bottom half of states when it comes to the percentage of its population — 49% — that has received at least one dose.
“There is an element of worry, of, like, ‘OK, are we just doing the honor system?’ ” Smith said, adding that he makes sure to bring a mask with him wherever he goes, even though he is vaccinated.
As the COVID-19 pandemic moves into a new phase, immunocompromised individuals— including those with cancer and HIV/AIDS — and their advocates have responded to changes in mask mandates differently, while advocating for vaccine distribution in their community.
And with the highly transmissible Delta variant of the virus spreading across the country, including in Arizona, amid a seeming return to normalcy, many still worry about contracting COVID-19.
Ravi Grivois-Shah, executive director of the Southern Arizona AIDS Foundation (SAAF), believes that it is more important than ever to “fight for rights” of immunocompromised individuals.
“I’ve heard through the grapevine that people in our community are being reported to be harassed because
they’re wearing masks, and that perpetuates stigmatization of those individuals,” he said. “So our goal is to reduce stigma and normalize mask-wearing.”
Immunocompromised individuals include those who have autoimmune diseases, such as HIV/AIDS, as well as those who are receiving treatments for diseases like cancer that weaken their immune system.
The term also covers people who have received transplants that have affected their immune system.
Grant McFadden, an immunology professor at Arizona State University and the director of its Biodesign Center for Immunotherapy, Vaccines and Virotherapy, said that there is no standard definition of “immunocompromised.”
“The definition is that there’s some aspect of their immune system that doesn’t work as well as other people, and it can be because of their disease, it can be because of the drugs that they’re on, it can be due to genetic factors,” he said. “So, it’s hard to be more specific than that, because it’s a continuum from mild immunocompromised up to extreme immunocompromised.”
Immunocompromised people who are unvaccinated — often out of a fear of how their immune systems will react — are undoubtedly at a higher risk of contracting the coronavirus, McFadden said.
As for vaccinated people, he explained, “it depends a lot upon the response of the individual immunocompromised person, in terms of whether or not they’re able to mount an immune response because it does vary quite a bit from person to person.”
“My understanding is that for some of the immunocompromised people that have been vaccinated, sometimes a repeat vaccination can help some of them,” he said.
The Centers for Disease Control and Prevention’s website warns: “If you have a condition or are taking medications that weaken your immune system, you may NOT be fully protected even if you are fully vaccinated. Talk to your healthcare provider. Even after vaccination, you may need to continue taking all precautions.”
Data from a May study of organ transplant recipients who had received both doses of the COVID-19 vaccine suggest that “a substantial proportion of transplant recipients likely remain at risk for COVID-19 after 2 doses of mRNA vaccine.”
But as the United States moves away from mask-wearing and social-distancing protocols and embraces a sense of normalcy, it has become more difficult for immunocompromised individuals to take such precautions.
In Arizona, attempts to encourage mask-wearing and social-distancing have been met with resistance and even harassment.
For example, a Mesa wig shop that sells wigs to customers undergoing cancer treatment recently was targeted by an anti-mask group.
Mark Rosenbaum, 64, has had HIV for nearly 40 years. His concerns are similar to Smith’s.
“I think it’s premature,” Rosenbaum said of the CDC lifting its mask advisory last month, adding that because herd immunity hasn’t yet been achieved in Arizona, he worries about the spread of the virus. He also said there is a significant population of immunocompromised people who might still be uncomfortable being around others who are unmasked, and believes removing the mask requirement was “strictly a political move.”
Rosenbaum, who is from Tucson, formerly worked for the Tucson Interfaith HIV/AIDS Network (TIHAN). He said he believes the burden has been put on immunocompromised individuals to ensure they do not become infected with the coronavirus, as opposed to a sense of shared responsibility, which he feels is unrealistic.
“As somebody who’s had HIV for 38 years, I come from the old days, and people with HIV for decades now have had to take it upon themselves with the assistance of the medical community to protect themselves,” he said.
As a healthy person with HIV, Rosenbaum believes he will be fine during this new phase of the pandemic, but worries about “many, many, many of (his) brethren” who are still at high risk of becoming infected with the coronavirus.
Jay Conyers agrees. He is the chief program officer of the Cancer Support Community Arizona (CSCAZ), which offers support programs to cancer patients and their loved ones.
“There may be people that are too sick to receive the vaccine,” he said. “And we are in no position to be asking people whether or not they’re vaccinated at this point in time. And because of that and because we know that they are at an elevated risk, and knowing that people that are vaccinated can get reinfected after vaccination, we in no way would support something that would potentially expose them to additional hurdles.”
Jamie Neidorf is the quality improvement manager at Direct Advocacy and Resource Center, a nonprofit organization operated by and for people with disabilities. She said that the center signed onto a letter opposing the CDC’s decision to change mask guidelines for fully vaccinated people. The letter, posted online, says the allied organizations are “disheartened, confused and outraged” about the new guidelines because they “disregard people at highrisk and many people with disabilities.”
The CDC’s website warns that “adults with disabilities are three times more likely than adults without disabilities to have heart disease, diabetes, cancer, or a stroke,” putting their immune systems at risk.
“This is blatant ableism throughout our already seriously ableist society and systems,” the letter says of the new mask guidelines. “This is leading to further discrimination against people at high-risk of contracting, being hospitalized, or dying from COVID-19 as we continue to try to survive this pandemic while everyone else is ‘moving on’ as if the pandemic is over.”
The CDC did not immediately to a request for comment.
Grivois-Shah, the executive director of SAAF, said he believes “the burden is shifting over to immunocompromised people to make sure that people stay healthy and those who are immunocompromised, are looking out for themselves in terms of continuing to wear a mask and socially distance.” He said that because the organization works with so many HIV-positive people, staff are still required to wear masks while interacting with clients.
Jimmy Thomason, 39, the executive director of Aunt Rita’s Foundation, an HIV/AIDS support organization, has lived with HIV for 16 years. But as someone who is fully vaccinated, he said he doesn’t have concerns about the lifting of the mask guidelines.
“I have immense respect for Dr. (Anthony) Fauci, and so his advice towards the CDC, I take it as acceptable,” he said.
Some advocates for immunocompromised populations say that the relaxation of the mask advisory and social distancing protocols has made it more difficult to return to in-person work.
“We put the health and safety of our participants at the forefront, and we do not want to be a part of any situation where something that we do leads to one of our participants becoming exposed or potentially exposed to COVID,” Conyers said. “And so for that reason, we are intent on staying virtual-only for the foreseeable future.”
McFadden, the ASU immunologist, says that with the mask guidelines lifted
respond and the Delta variant spreading, immunocompromised people are “under considerable threat, more so than vaccinated people.”
“If you’re asking me, ‘Would I have made that recommendation?’ Probably I would not have,” he said in regard to lifting the mask advisory. “But as you know, it’s not a medical or scientific recommendation, it’s also a political recommendation.”
Although the safety and efficacy of the vaccine in immunocompromised people are unknown, the CDC says the vaccine “can be safely administered to immunocompromised people” because they are not live vaccines.
Organizations such as SAAF, Aunt Rita’s Foundation, and CSCAZ are encouraging their members to get vaccinated.
SAAF partnered with Pima County to hold onsite vaccination clinics at its Tucson location in mid-June, but the clinics were canceled by the county. Still, the group is spreading the message that getting vaccinated is the best way to protect oneself against the coronavirus.
“The more folks that get vaccinated, that will also help protect people that maybe can’t get vaccinated for other reasons,” said Travis Craddock, the organization’s director of development. Aunt Rita’s Foundation took a similar approach and organized a vaccine drive in mid-June for its clients.
CSCAZ has been encouraging its clients to have a conversation with their physician. “We’ve read in the scientific and medical literature that (the vaccine) is not recommended for everyone depending upon what the status of your immune system is,” Conyers, the program officer, said.
For individuals with HIV/AIDS, there remains a stigma surrounding the disease, which has been exacerbated during the COVID-19 pandemic, advocates say.
Thomason, of Aunt Rita’s Foundation, recalls getting a haircut last month when he brought up the topic of HIV/ AIDS.
“I was wearing my mask, and I explained what I do, and somebody said, ‘Is that still a thing?’ ” he said. “And so it’s an uncomfortable conversation for many people.”
Ultimately, Thomason hopes conversations around mask-wearing and social distancing will spark broader discussions about the federal response to the ongoing COVID-19 pandemic compared to the 1980s-era HIV/AIDS epidemic in the United States.