As many ditch masks and COVID-19 precautions, some immunocompromised Coloradans feel left behind

DENVER — Amy Kilpatrick was attending a cardiac rehabilitation clinic when the COVID-19 pandemic hit Colorado in 2020. Kilpatrick had struggled with heart issues for years, but the doctors were finally discovering answers and working on solutions for Kilpatrick, a Commerce City resident, to manage it.

Then COVID-19 arrived, and Kilpatrick’s world seemed to be turned upside down and filtered through a machine of worst-case scenarios.

While COVID-19 may only lead to minor symptoms for many, the disease caused by the virus would be a death sentence or a one-way ticket to a miserable life for Kilpatrick, who has an autoimmune disorder that causes damage to her heart.

“For me, the fear is less about dying from [COVID-19] and more about how much worse it would make my life,” Kilpatrick said. “I can’t afford for things to be worse.”

The forgotten victims

As many around Colorado are throwing away their masks, returning to indoor concerts, eating at restaurants and embracing friends and family, many immunocompromised Coloradans are concerned their day for those activities may never come.

The American Medical Association estimated about three percent of the population is immunocompromised, meaning their immune systems are weakened and more susceptible to serious consequences of illness.

Kilpatrick is 36 years old, and most of her friends are young and without chronic medical conditions. In the height of the pandemic, her friends held outdoor hangouts, Zoom meetups and made sure to mask up when they interacted indoors.

But as the vaccines became widely available, her friends ditched their masks and stopped taking COVID-19 precautions, as they were told their risk of developing serious side effects of COVID-19 was next-to-nothing.

As her friends seemed content with abandoning the pandemic-era precautions, Kilpatrick grew increasingly lonely, knowing the vaccine did not provide full protection for her, and she still needed to be careful to avoid contracting COVID-19.

“It went from everything being so much more accessible to now everyone else is back to normal and I’m still a hermit,” Kilpatrick said. “It felt like everyone was in this together, and now it just feels like a small, select group of people.”

Kilpatrick said grocery stores offering early hours for immunocompromised shoppers eased her mind, but such hours have disappeared. Businesses requiring masks and vaccines would also help her feel safer going out in public, but those businesses are rare, she added.

“I think people are kind of quick to dismiss COVID and say it isn’t a thing anymore and we're just going to continue life as it was before,” Kilpatrick said.

Kilpatrick has had four doses of the COVID-19 vaccine and said it has made her feel better than having no protection at all, but her doctors have told her the science is inconclusive on just how protected she is with her heart condition.

Though it did not publish specific numbers, the Center for Disease Control and Prevention (CDC) said the vaccine efficacy is “slightly lower,” for older adults and people with weakened immune systems.

Dr. Peter Forsberg, an assistant professor of hematology at the University of Colorado School of Medicine and a physician who works specifically with immunocompromised patients, said vaccine trials were not conducted on the immunocompromised population, so scientists are still studying how effective the vaccines are for them. Because of this, many people in that group feel the risk of returning to normal life is not worth the cost of their lives.

“Even with people who’ve been really proactive and aggressive in terms of trying to minimize risks and getting vaccinated, they’ve been left with less tools to draw on than the general population,” Forsberg said. “As we have eased restrictions, it's become even more challenging for folks who don’t have those tools to rely on.”

Forsberg said the lack of data and clarity on vaccine efficacy has left his immunocompromised patients with a tough choice: risk their health to return to life as normal, or live in loneliness as they watch their loved ones return to old activities.

“There are more long-term questions than long-term answers,” Forsberg said.

Feeling disposable

Paula Rhoads, of Denver, began wearing a mask in 2019 when she heard of a virus burning its way through China and Europe. She felt silly, as the virus had not yet reached the United States, but she knew the day would come sooner rather than later, and at 65 years old with a traumatic brain injury, she felt wearing a mask inside the grocery store would be better than risking exposure the virus.

As the pandemic went on, many of her peers opted not to receive the vaccine, began falling for COVID-19 conspiracy theories and refused to wear masks; actions she saw as personal for the way they directly impacted her.

“There are so many people who don’t care about people like me and the potential that it could destroy my life,” Rhoads said. “There have been major medical advances that I have benefited from, and COVID could destroy all that work.”

Rhoads also pointed to the fact that many long-COVID symptoms are neurological, which could amplify her brain injury.

“It feels like every man for himself,” Rhoads said. “I can sit here and play defense, but I also have things I’d like to do that I can’t anymore.”

The politicization of science

Susanna Speier is a Denver resident who has Crohn's disease and takes a medication that compromises the immune system but mitigates the effects of the disease. For her, the pandemic has felt like a never-ending cycle of misery.

She lived in Castle Rock when the pandemic first hit, and she said many of her neighbors subscribed to COVID-19 conspiracy theories, so she moved to Denver to be surrounded by what she saw as a safer community.

“It was scary to be there and be around people who had politicized this to that degree,” Speier said. “I didn’t feel it was a good place for somebody with a compromised immune system; it just didn't feel safe.”

Prior to the pandemic, Speier enjoyed live music, art shows and movie theaters. But since a COVID-19 diagnosis could be life-threatening to her, Speier has been extremely reluctant to return to such activities, in part because she feels like many around her have politicized the pandemic.

“It’s really counterproductive to anyone’s health and the health and wellbeing of healthcare workers to encourage this rhetoric of ‘this is my freedom to mask or freedom to get a vaccine,’” Speier said. “Those actions aren’t in a vacuum, it really is going to affect the larger population, and it’s going to affect the economy long term.”

Kevin Williams, the civil rights legal program director for the Colorado Cross-Disability Coalition, said many who felt wearing masks infringed upon their freedom would claim to have disabilities that prevented them from being able to safely wear a mask.

“When the pandemic hit, we were getting calls left and right about that,” Williams said. “Unfortunately, there are a lot of people who aren’t disabled and think it’s cool to take advantage of modifications meant for disabled people.”

Williams said many people with disabilities cannot take any risk of catching the virus and have hired at-home healthcare workers while wearing N95 masks because their risk is so high. Because of this, Williams said he finds it offensive that some have turned the pandemic into a political war.

“It’s just so ridiculous,” Williams said.

Speier, who authors a newsletter for immunocompromised people, surveyed members of an immunocompromised support group to see how their salaries had changed throughout the pandemic. Of her 52 immunocompromised respondents, 16 saw a salary increase, 28 saw a stagnant salary and eight saw a salary reduction.

Of her 44 immunocompetent respondents, 23 saw a salary increase, 11 saw a stagnant salary and 10 saw a salary decrease.

“I encourage you to compare and contrast while reflecting on your own experiences with salary and income changes over the last two years,” Speier wrote in the newsletter.

Looking for creative solutions

Though life may never be the same for immunocompromised people, Speier said many businesses she frequents have found ways to be more accessible. Her hair stylist, for example, has set up an outdoor styling station for clients who cannot risk being indoors with others who unknowingly might have COVID-19.

Similarly, the Denver Center for Performing Arts (DCPA) required masks and proof of vaccination, which allowed Speier to return to old hobbies after years of sitting them out. (DCPA lifted those precautionary measures Monday, March 28.)

With a little creativity, Speier feels all businesses could have it both ways: be COVID-conscious and accessible to immunocompromised people and continue running a successful business.

“I think if someone with an entrepreneurial spirit wants to be more respective of science, they can find ways,” Speier said. “It’s about paying attention to the science and being creative.”

Alison Berg is a multimedia journalist at Rocky Mountain PBS. You can reach her at alisonberg@rmpbs.org.