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The CLL Nurses Note: The Importance of Advocating for Your Safety in Healthcare Settings

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We have for a very long time known that those with CLL / SLL are at risk for having difficulty fighting off infections. We have also been keenly aware of the increased morbidity and mortality associated with those living with the disease who acquire pneumonia. But the COVID-19 pandemic has put a spotlight on the increased infection risk due to the impaired immune responses of those with CLL / SLL more than ever before.

Prior to the COVID-19 pandemic the NIH, CDC, and FDA did not consider those with CLL / SLL to be immunocompromised unless they were currently undergoing cancer treatment. It took near a year and a half of CLL Society continually advocating for CLL / SLL to be added to their official list of those who were considered moderately to severely immunocompromised, regardless of treatment status.

Due to CLL / SLL being a cancer of the immune system, the B cells which are responsible for forming antibodies that help fight off infections do not function properly. Being on treatments such as a BTK inhibitor (such as ibrutinib or acalabrutinib) or a CD19 monoclonal antibody (such as rituximab or obinutuzumab) can further impair the immune response. As Dr. Brian Koffman has repeatedly said, “If you have met one person with CLL, you have met ONE person with CLL.” Meaning that the disease is extremely heterogeneous and differs greatly from person to person depending upon multiple factors. This is also true when it comes to understanding just how immunocompromised each person with CLL / SLL might be. While it is true that there is not a publicly available lab test that can gauge an individual’s infection risk, there is currently research underway that is aiming to better understand who might be at higher risk and why.

In the meantime, the majority of healthcare facilities in the US are no longer requiring masking of patients, visitors, or healthcare providers mainly due to the social pressures to “move on” and hospitalizations currently being lower than when compared with earlier in the pandemic. While it is true that most Americans by now have some level of immunity to COVID-19 either due to infection(s) and/or vaccines, this does not necessarily ring true for the immunocompromised community.

There was a great article that just came out last week in the New England Journal of Medicine on the subject of masking being removed in healthcare facilities. It points out, “…hospitalized patients are different from nonhospitalized populations. Hospitals, by definition, aggregate some of the most vulnerable people in society when they are at heightened vulnerability (i.e., when they have an acute illness). Vaccines and treatments for SARS-CoV-2 have reduced the morbidity and mortality associated with SARS-CoV-2 infections for the majority of the population, but there remain important subgroups that continue to be at elevated risk for severe disease and death, including older adults, people who have immunocompromising conditions, and people who have severe coexisting conditions, such as chronic lung disease or heart disease. Members of these groups constitute a large portion of hospitalized patients at any given time; many of them also make frequent visits to outpatient health care facilities.”

We don’t know how to gauge just how immunocompromised each individual is with CLL / SLL. But what we do know is that each individual’s immune system is compromised. CLL Society still encourages those in our community to wear a well-fitted quality N95 mask any time you are entering a healthcare facility due to the increased risk. This includes clinic settings, infusion centers, and especially in urgent care and emergency room settings where there is a higher likelihood of people in the waiting room who are there due to an infection. Unfortunately, COVID-19 remains a risk to those who are most vulnerable.

I would like to emphasize that while some have suggested that masking does not work, studies have repeatedly shown that they do work to help prevent against infection and lower the amount of viral load an individual is exposed to should they be exposed to an infected individual while wearing a mask.

But it is important to note that masks work best when:

  1. Everyone is wearing them.
  2. A high-quality mask is being worn (such as a KN95 or N95).
  3. They fit correctly.
  4. They are worn consistently without being removed.

In addition to continuing to wear a mask yourself, here are some additional ideas to consider when it comes to advocating for reasonable infection control measures and having safe access to healthcare as an immunocompromised individual:

  • Consider utilizing telehealth options when appropriate. Many healthcare providers are still offering this option as an extension of special healthcare provisions made during the height of the pandemic. Oftentimes CLL / SLL providers will request that you come into the office to be seen so that they can palpate (feel) for any enlarged lymph nodes on a regular basis. However, if a hands-on assessment is not necessary and your healthcare provider would just like to check in with you and go over your routine lab results, a telehealth visit might be appropriate.
  • Request appointments that occur first thing in the morning, if possible, before the waiting areas become full and the wait times might become longer. Some doctors’ offices, dentists’ offices, and ophthalmologists will even schedule you 30 minutes before their first appointment of the day so that you can be in and out of the office before anyone else comes in.
  • If there is extensive paperwork required by the office, ask ahead of time if the paperwork can be sent to you to fill out ahead of time to reduce the amount of time spent in the waiting room.
  • When scheduling an in-person appointment ask the receptionist to put a note in your chart indicating that you are immunocompromised, and you are requesting that masks be worn by any healthcare personnel that have direct contact with you.
  • Consider taking your own supply of masks to office visits to hand out if healthcare personnel indicate they don’t have them immediately on hand. You should not assume that staff still have quick access to boxes of masks around the office in places where mask mandates have disappeared.
  • If you require an overnight stay at a hospital, you can request that a sign be placed on your door asking staff to wear a mask before entering the room.
  • If you must be put under general anesthesia for a surgical procedure, again ask that all staff in contact with you wear a mask and talk with anesthesia about putting a mask back on you as soon as it is feasible when you wake up from anesthesia.
  • If urgent care or emergency care is needed, share that you are immunocompromised and you are requesting reasonable accommodations to be placed in an isolated area while you wait to be evaluated by healthcare personnel.
  • If healthcare personnel refuse to make accommodations, unfortunately you may need to either request to speak to a nursing supervisor, hospital patient advocate, and/or an office manager to make your needs known. You may need to specifically use the language, “I am requesting healthcare workers I am in contact with to wear a mask as a reasonable accommodation under the Americans with Disabilities Act.” Keep in mind that secretaries and nurses may not be familiar with what this means, and you may need to take your request up the hospital’s chain of command. If your request is still denied by a supervisor or member of management, you should ask for a response in writing as to why it was denied and by whom.
  • Print off CLL Society’s Official Statement on Mask Wearing and Other Protective Measures for those with CLL / SLL in Healthcare Settings and take it along with you to healthcare visits to help back up your requests.

Never hesitate to ask, and be kind-but persistent. Having safe and equitable access to healthcare is a federal law! Please understand that by healthcare facilities accommodating any of the above requests, they are not doing you any favors or giving you special treatment. They are providing you with the bare minimum, which is the ability to receive safe healthcare. But the bottom line is that you may need to speak up, you may need to ask multiple times, and you need to be prepared to take your requests up the chain of command when necessary. And remember, you are your own best advocate when it comes to your own healthcare!

Keep learning, and please stay safe.

Robyn Brumble, MSN, RN

CLL Society - COVID-19

When appropriate, the CLL Society will be posting updates and background information on the present Coronavirus pandemic focusing on reliable primary sources of information and avoiding most of the news that is not directly from reliable medical experts or government and world health agencies.