MADISON, Wis. —  When Herb Heneman makes decisions about his health, he’s not just thinking about himself.

Heneman, a 77-year-old retired professor, received a liver transplant through UW Health in 1991 that helped him create a new life. Since then, his gratitude for getting that second chance has guided everything he does.

“I've received an incredible gift of life. It's hard to put into words what that really means,” Heneman said. “But I want to cherish that gift of life, I want to protect it. And I want to honor my donor and my donor family for the gift that they gave me.”

During the COVID-19 pandemic, that’s been more of a challenge. Heneman, like other organ transplant patients, has to take medication to suppress his immune system — which keeps his body from rejecting his new liver, but also leaves him more vulnerable to infection.

“We had to be extremely cautious, and remain extremely cautious, with regard to the possibility of contracting COVID,” Heneman said.

With the U.S. seeing slower disease spread and more widespread immunity, the COVID-19 risk for most people is on the decline. And new CDC guidelines are giving most of the country the go-ahead to ease up on precautions like masking.

But for the estimated 7 million Americans with compromised immune systems, COVID-19 still poses a huge threat, said Dr. Jeannina Smith, medical director of UW Hospital’s Transplant Infectious Disease Program. Smith is worried about how looser public health measures for everyone could make high-risk patients even more vulnerable.

“When you're talking about my patients, if they get COVID, their risk of a bad outcome is horrendous,” she said. “So all of the things that we used to do to prevent infection, like masking in public — by eliminating those, they really place my patients, 7 million Americans, at risk.”

Next-level risks

​Organ transplant patients face a bit of a catch-22 when it comes to their health.

For transplant recipients, immune-suppressing medicine is essential to make sure the body doesn’t turn on its new organ, Smith explained. Others may take these kinds of drugs to treat cancer, or to deal with autoimmune diseases like lupus and rheumatoid arthritis.

“Their immune system, we've tied its hands behind its back on purpose,” Smith said. 

But that hand-tying also makes it hard for patients to build up immunity to real foreign invaders like COVID-19. Even after vaccination, most organ transplant patients aren’t able to create antibodies that can fight off the virus, Smith said.

A large study of transplant recipients found that their risk of a breakthrough COVID-19 infection was 82 times higher than the general public — and their risk of developing severe illness was 485 times higher.

Those risks have made for a hard couple of years for Smith’s patients. While immunocompromised people face higher risks for many different diseases, Smith said COVID-19 has been on another level.

For the past two years, COVID-19 has become the leading cause of death for the UW transplant program, Smith said — the first time an infectious disease has been the top killer.

And even after decades of working with immunocompromised patients, Smith said, “I have never seen anything like the death and destruction from COVID.”

She’s also seen the pandemic take an emotional toll on her patients, who haven’t felt safe going out in public or meeting up with family. Many have felt discounted by public conversations about COVID-19, like the idea that immunocompromised people already “have a foot in the grave.” 

“First of all, it's not okay to say that their lives aren't worthy anyway,” Smith said. “But immunocompromised patients are your coworker, are your neighbor, are your child's friend's mother, are people who are active and out in the community. And their risks are really high when we don't protect them in spaces that they have to go to.”

‘They’re taking their life in their hands’

​In the past few weeks, many Americans have gotten more freedom to shed their masks. Wide stretches of the CDC’s new risk map are colored in green for low transmission. 

More and more, decisions about masking and other COVID-19 precautions are happening on the individual level, instead of across whole communities.

“For now, the era of county- and state-mandated masking is over — hopefully for a long time,” Wisconsin State Epidemiologist Dr. Ryan Westergaard said on a media call earlier this month. “The conversation shifts to, how do people make decisions?”

All of Wisconsin’s counties have low or medium community COVID-19 levels, according to the CDC’s new metrics. That means universal indoor masking isn’t required under the latest guidelines.

Westergaard acknowledged that in high-risk groups — like those who are elderly or immunocompromised — “the equation might change a little bit” for deciding when to mask up.

But at least at our current COVID-19 levels, the decision lies in each person’s hands. 

“My hope is that the age of mask mandates is in the rearview mirror, and the enlightened age of mask critical thinking is ahead of us,” Westergaard said.

Smith said she does see the reasoning behind looser mask guidelines, as the general risk has dropped and pandemic fatigue has set in. 

Still, she’d like to see more consideration for protecting her patients under the new guidance — like by keeping some settings as “safe spaces” for high-risk groups.

It’s one thing to go maskless at an indoor restaurant, where immunocompromised patients can choose not to go, Smith said. But there are many public spaces that are harder for vulnerable people to avoid.

“My patients who have to pick up prescriptions at the pharmacy, who have to ride public transportation, who have to go to the grocery store,” Smith said, “they unfortunately feel, and not unreasonably, like they're taking their life in their hands. And they felt much safer when we were masking in those safe spaces.”

Community care

​Over the past couple years of the pandemic, Heneman has had to say no a little bit more often.

He’s said no to going out to bars and restaurants, and to meeting up with his poker group. His kids, who live in different states, have only been able to stop by for a couple of quick visits — all to make sure Heneman keeps himself, and his liver, out of harm’s way.

Still, Heneman stressed that he considers himself lucky. He hasn’t had to worry about work or school during the pandemic, and he’s found many ways to keep busy while keeping safe, like getting into golf and spending time at his cabin up north.

“I have all kinds of things that I can do that make for a very happy life,” Heneman said. “I’m not sitting around twiddling my thumbs.”

Now, he’s hoping he can bring back some more travel and family time as COVID-19 trends turn downward. But he wants to do so safely — to protect his own health and his donor’s gift.

For those who are immunocompromised, Smith said she advises continuing to wear a good mask like an N95 if they’re indoors with others. With warmer seasons on the way, there will be more chances to get together outdoors, where it’s safer, she pointed out.

Even for those who don’t have high-risk conditions, Smith said wearing a mask in public spaces can be a sign of solidarity and caring for others who are vulnerable. 

Heneman said these days, he’s still masking up in most settings and avoiding crowds as much as possible.

“I understand why people don't want to wear masks. I personally don't either. But that's neither here nor there,” Heneman said. “What I hope is that people who do not wear masks, and are unvaccinated, will be respectful of those of us who still wear masks. And I would hope in particular that they themselves would consider wearing a mask in crowded situations simply as a way of showing potential compassion.”

Smith also stressed that these precautions don’t have to go on forever. Recent medical advances — including a protective antibody drug that can stay in the system for six months — have shown promise for keeping immunocompromised patients safer from COVID-19.

But these medications are still in very short supply, Smith pointed out. Moving forward, she said she’ll feel better about her patients’ safety if these drugs become more widely available.

“There’s an end in sight to this,” Smith said. “A different end. A better end.”

In the meantime, Smith said many of her patients are feeling “stigmatized and discounted” by the recent changes. She’s hopeful that more people will keep their high-risk neighbors in mind as they’re getting back to some more of their pre-pandemic lives.

“I, in my heart of hearts, don't believe that people think, ‘Well, my convenience of not wearing a mask in the grocery store is actually more important than my neighbor who's getting chemotherapy for breast cancer,’” Smith said. “I think they just don't know. They're not getting the message.”