For Immunocompromised Patients, the COVID-19 Threat Lives On

With COVID, We Are No Longer a Nation in This Together

I am elated that about half of adults in the United States are fully vaccinated and for the positive economic impact of lifting mask mandates around the country. However, I am also concerned about the Centers for Disease Control and Prevention (CDC) jumping the gun on mask guidance when there are nations currently crippled by COVID-19, and so much of our own population is still unvaccinated.

For me, the lifting of mask mandates is petrifying, due to my having chronic lymphocytic leukemia (CLL). CLL patients are among the 10 million that are immunocompromised and remain at greater risk of catching COVID-19.

Like many others, I am still trying to determine how to proceed in life after learning about a month ago that CLL (and other blood cancer) patients are showing low, or even undetectable, antibodies from the vaccines. I had hoped that participating in the Leukemia and Lymphoma Society’s antibody test study would help science while also helping me learn how effective the vaccine was for me. Upon receiving a number value on my blood test result showing I had antibodies, but no accompanying explanation chart, I asked for an interpretation from my CLL specialist at Dana-Farber Cancer Institute (DFCI).

“It’s not known how to interpret the antibody test results,” my CLL doctor said.

Considering I was counting on learning if I had produced a robust antibody response in order to get on with life outside my home, her answer surprised and disappointed me. Further explanation arrived a few days later.

“There are antibody tests. However, even when they do detect antibodies, it’s not known how to interpret the results. We don’t yet know what level of antibody is needed for protection against the coronavirus or whether those antibodies will protect against variants,” DFCI released as guidance for patients. Others with CLL shared that they received similar information from their oncologists and cancer centers.

Please don’t think I am anti-vaccine. Quite the contrary. The more of you who get vaccinated, the safer everyone will be. Plus, there’s still the hope that researchers will quickly determine if the vaccine stimulates something other than antibodies, such as cellular immunity, to help protect us.

As if this is not enough to add to the well-documented COVID-19 related stress we’ve all been enduring, there’s now the mask situation or lack thereof.

“The presence of antibodies may give people a false sense of security that they can stop wearing masks and taking precautions, which could make them more susceptible to infection,” DFCI said.

This has even greater ramifications in light of the CDC announcement on May 13 advising fully vaccinated people that they can go mask-free indoors and outdoors.

“We have all longed for this moment,” Rochelle P. Walensky, MD, director of the Centers for Disease Control and Prevention, said at the White House news conference announcing the changes. “If you are fully vaccinated, you can start doing the things that you had stopped doing because of the pandemic.”

Dr. Walensky warned that people who are immune-compromised should speak with their doctors before giving up their masks. The unvaccinated, she pointed out, remain at risk of getting COVID-19, of death, or of spreading the disease to others, and should still mask and get vaccinated.

This announcement rubs salt into the wounds of the immunocompromised. Especially as most of the nation has not been fully vaccinated.

We are no longer a nation in this together. Lifting the mask mandate has left me feeling further dejected, beaten up, and marginalized.

“The CDC announcement about vaccinated people being safe to go without masks now produced a mixture of feelings for me. And honestly kind of a kick in the gut. I felt like it would be a comfort to just touch base with the people who might know best what an announcement like that can feel like to a CLL patient, especially those of us who didn’t respond to the vaccine. I’m absolutely happy for the freedom this will bring to others, but I fear this will make life much harder on many of us,” said Christine Vaal, a CLL patient and fellow CLL Women Strong member from Jasper, Indiana.

It is consoling to know that I am not alone in my fears. Other CLL-ers are voicing similar feelings in online support groups and virtual Zoom group meetings. Everyday life is already increasingly challenging.

Earlier today our mortgage broker emailed us to come in person to sign the now completed paperwork for our refinancing. My husband requested a virtual signing, explaining that I am immunocompromised and still need to follow COVID-19 precautions.

“I’m vaccinated, so she’ll be safe,” the broker assured him.

Thank you, Mr. Broker, for getting vaccinated, I thought, but your well-meaning reply infuriates me. Like many CLL patients, I am exhausted by needing to explain in detail to all that even though I too am vaccinated, I am not as protected by the vaccine as someone whose immune system is not compromised.

When learning that the broker tried to accomplish signing with my husband going in person, and delivering the paperwork to me at home, I was stunned. “No one cares,” my husband said.

Scratching my head in disbelief, a revelation hit: I am an outsider looking in at life. However, I need to help change this lack of knowledge. I emailed the broker to explain that my husband going in person is also a risk for me. I attached a recent news article explaining why immunocompromised patients, especially CLL-ers, are not safe. Shouldn’t a request in these times be sufficient?

How is my still being at risk of COVID-19 today any different than it was when everyone was at risk a few short months ago?

I started isolating on March 13, 2020. I now continue with the other immunocompromised members of the U.S. population, including 200,000-plus CLL patients. At this point, it nearly feels like an incarceration.

I feel cheated! Cheated out of time to live life in the outside world.

“I am not happy about this at all and have a bad feeling that I will be stuck at home forever. I asked my doctor for guidance and he said I need to be every bit as cautious now as during the height of COVID,” CLL patient Rita Anderson, of Beaver Crossing, Nebraska, wrote to me.

To say that the immunocompromised community is disappointed does not even come close. For a group already robbed of parts of life due to illness, treatments, recuperations, and hospitalizations, how long can we go on living in captivity?

Haven’t our illnesses already taken enough away? Life on the outside. Life like everyone else. Life with everyone that matters to us. But once again, we are reminded that we are different. We have cancer.

Businesses are re-opening, which helps life get back to normal. With this positive progress, many of us are wondering why wearing masks a while longer is considered negative, especially as it has become part of daily life.

“While great for healthy, vaccinated people, the CDC's unmasking guidelines for the immunocompromised population including me, will make life even more difficult, further limit activities, and create additional uncertainty and stress,” said Susan Kanoff, a Boston-area CLL patient and my co-founder of CLL Women Strong. “While everyone around me will be getting back to normal, my own risk level will increase,” she added.

I long to engage in everyday activities alongside others, even my least favorite, grocery shopping, or waiting in the long line at the post office. For now, seeing immediate family members remains a distant dream, including traveling and meeting our grandson in Florida who just turned 1 year old, or visiting and hugging my sister to console her after her husband’s recent passing.

For the non-immunocompromised, please know that for us, acquiescing to peer pressure, kind invitations, or closed-minded business practices truly has the potential of being a matter of life and death. It has been reported that there is a 90 percent risk of hospitalization for CLL patients with COVID-19, and one-third of them do not survive. Please be flexible. Make virtual or outdoor, distanced accommodations for us. It was not so long ago that you were doing the same for yourselves.

Begrudgingly, our broker finally acquiesced to a virtual signing. Life shouldn’t be this difficult. And if people are expected to be on an honor system regarding masking, then let’s add in another element, if we ask you to wear a mask, or state we’re immunocompromised and request COVID precautions, please help us out. If you’ve been vaccinated, thank you. As more people receive it, the safer all of us will be. However, please don’t try to convince us we’re safe when our doctors tell us otherwise. We’d be out with you if we could.

To all the immunocompromised patients out there, remember that advocating for yourself is a necessity, even at the bank.

Michele Nadeem-Baker is a Patient Power reporter, host, and blood cancer patient and advocate. She is the co-founder of CLL Women Strong and Kicking Cancer In Heels.