As the new coronavirus (COVID-19) continues to spread around the world, concerns about how the virus impacts patients with cancer are mounting, making virtual connections between experts and patients a vital component of staying healthy.

To facilitate these connections, the CLL Society, a nonprofit organization focused on patient education, support and research, recently hosted part one of a virtual community meeting series where patients with chronic lymphocytic leukemia (CLL) spoke directly with experts about every aspect of the disease, from medication to clinical care and beyond, and how to get the best care possible during the pandemic.

Held via webinar on March 27, the meeting was designed to provide a link between patient questions and the CLL Society’s panel of experts, according to Patricia Koffman, co-founder and executive director of the organization. Dr. Brian Koffman, CLL Society co-founder, executive vice president and chief medical officer, who is also a 15-year CLL survivor, served as moderator, and was joined by a panel of experts from Lumere Healthcare Solutions, the University of Massachusetts, Memorial Sloan Kettering Cancer Center and Duke Cancer Institute.

Thomas E. Henry III, a clinical pharmacy advisor with Lumere and patient with CLL, kicked off the discussion with news about the CLL drug supply in the United States, as well as information on how patients can stay on top of their maintenance medication supply during the pandemic.

According to Henry, at the time of the presentation, the Federal Drug Administration reported no shortages for any commonly used CLL medications, including Imbruvica (ibrutinib), Calquence (acalabrutinib), Venclexta (venetoclax), Rituxan (rituximab) and others.

Although China is a major supplier of medications used in the US, the interruptions in production that occurred in certain regions due to the COVID-19 outbreak there did not impact US supplies and normal production is being resumed as the number of cases in China drop, Henry said. This has led to legislators considering new rules that would require more drugs to be made in the US.

As for how patients with CLL can ensure they don’t experience any gaps in dosage, Henry provided some strategies, including early refills and working with health care teams to modify dosages.

“A lot of people don’t know that your insurance will pay for a refill once you use 75% of the doses that were prescribed,” he said. “So, if you have ibrutinib, for example, and you have the 28-day supply, you can actually order that on the 21st or 22nd day and start to stockpile a little that way.”

This also applies to maintenance medications that help to mitigate CLL comorbidities. “Comorbidities increase the risk for patients that may contract COVID-19,” Henry explained.
“I think that patients need to be proactive and order their medications early. Don’t wait until you’ve taken your last pill to call the pharmacy.”

Susan J. Leclair, Chancellor Professor Emerita, University of Massachusetts and senior scientist with Forensic DNA Associates, LLC, then discussed the COVID-19 testing process and offered tips on how patients can modify their daily activities to stay safe from the virus.

“There’s a lot of stuff on the web right now about using various home chemicals to clean things,” said Leclair. “You can use alcohol, but you have to use alcohol that’s over 62%. So, unfortunately, unless you have a still in the backyard, and you can control this, using booze isn’t going to work. It’s too low.”

Dr. Anthony Mato, director of the CLL Program at Memorial Sloan Kettering Cancer Center, and Dr. Danielle M. Brander, associate professor of medicine at Duke Cancer Institute,
then fielded questions from the audience on topics like clinical trial participation and personal risk.

In the case of patients who are currently enrolled in clinical trials, Mato explained, participation should be continued wherever possible.

“Clinical trials are such an important part of the care of patients with CLL,” said Mato. “My stance has been that it is not in the best interest of patients to stop treatment in the context of a clinical trial, largely because we feel that the crisis with COVID-19 will pass and yet the CLL will still be present following that crisis, and so it is our duty to try and control the disease as best as possible.”

To reduce risk and exposure to COVID-19, Mato said, he and his colleagues work with patients on an individual basis to minimize the number of cancer center visits patients may need in the context of their trial. “We are largely switching to telemedicine visits, trying to do home labs and even shipping study drugs to patients. And we’re doing that on a large-scale basis within our CLL program,” he said.

Brander added that patients with CLL may be concerned about being at a higher risk of contracting COVID-19, and that she and her team are working with patients on an individual basis to help manage those concerns.

“The difficulty now, when you’re looking at (current COVID-19) studies, is bringing together a very diverse group of patients,” she said. “Their cancer might have been in a different location that kind of makes sense. (For example), lung cancer patients with active treatment, or recent surgeries are going to be very different maybe than patients with CLL. So, like Anthony (Mato) mentioned, this is why we’re trying to minimize your exposure with clinic visits.”