Brian Koffman

Treatment that weakens the immune system can often leave patients with cancer at a higher risk of illness from infections such as the new coronavirus (COVID-19). But according to Brian Koffman, the co-founder, executive vice president and chief medical officer of the 

, patients with cancer, for example, those with chronic lymphocytic leukemia (CLL), may be better equipped to handle to challenges of avoiding illness thanks to their experience with cancer.

® recently spoke with Koffman about how patients who are living with CLL may have to be more careful due to their immunocompromised states, but they may also be more experienced with staying safe and healthy given their treatment.

This will pass. We are the experts. We know how to handle a chronic illness. In some ways, it’s much easier to handle an acute illness, because many of us have been handling this for years, some of us for decades. So, we know what we have to do and what we don’t have to do.

The best course for us is to avoid getting the disease, and the guidelines are pretty clear. They’re exactly the same for us, we just have to do it better, and we just have to be extra careful about them. It’s like, you don’t have to wear two masks; you just wear a mask. You don’t have to not touch your face twice; you just don’t touch your face. So, we just have to be more careful, but we’re also more experienced at doing those things.

So, we will get through this, and there is lots of good advice out there and lots of support out there. But it’s not going to be a smooth path. I suspect that things will be bumpy. We’ll probably have resurgence of the disease in some communities, in hotspots that jump up again. We may find that we may take two steps forward and three back and we may find that it’s a bumpy road.

And I don’t think that there’s an absolute clear path yet for people like ourselves who are more vulnerable, in terms of how we’re going to be reintegrated into the community. But I think what we need to do is stay together and advocate for ourselves and for each other and be a strong community together and we will get through this.

And like I say, fewer of us (with CLL) are getting this than other people because we’re experienced in handling it. I’m optimistic that this will pass and that we’ll get through it and maybe a larger percentage of CLL patients will come out of this the other side than maybe some others.

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Patients with chronic lymphocytic leukemia are at risk for the worst of COVID-19 symptoms, but going on the cancer journey has prepared them for the pandemic.
 

How Patients with Chronic Lymphocytic Leukemia Are Equipped to Handle the COVID-19 Pandemic

While chronic lymphocytic leukemia (CLL) is the most common leukemia in adults, many patients in smaller communities may not meet another individual with the disease in their lifetime. But thanks to the new coronavirus 2019 (COVID-19) pandemic, support groups that previously met in person are now being held online and helping those in more rural areas connect to a larger community filled with people who understand what it’s like to live with this disease.

 recently spoke with Brian Koffman, the co-founder, executive vice president and chief medical officer of the CLL Society, about the importance of connecting with other patients and how moving support groups online has given a new sense of hope and community to individuals who may not have had access to that connection previously.  

Because CLL is a relatively rare cancer compared to really well-established communities for breast cancer or even colon cancer and other cancers, there is tremendous solace for patients in seeing other patients.

When people meet people like me, a 15-year survivor — and not with a gentle form of CLL, but a very aggressive form of CLL – having met with me and seeing me, or with some of the other people in the group who are 17 years out or 20 years out, that says something to them that no doctor can ever say. They can look in the eye of another patient and say, “I was diagnosed 20 years ago, and I was scared to death, but now it’s 20 years later and I’ve seen my kids grow up and give me grandchildren.” It’s a tremendous message. And we don’t want that messaging to stop just because we can’t socially get together.

So, we think it’s even more important now because people are being isolated. (In these groups) there’s a lot of tips people can give about “where can I get a mask, what’s going on here”. I’ve attended a number of these groups and people have said “so-and-so will deliver groceries to you” because it’s a local group. The group in Seattle can give tips to somebody else in Seattle, saying, “have you tried so-and-so? They still have this supply or that supply,” and it’s been a tremendous resource for people beyond their normal family.

The other thing that’s been amazingly cool about this is that people in smaller communities,  where they wouldn’t be able to put together a support group, have called in to some of the centers where it might be 100 miles away and they were going to drive in, now they’re right there in the same virtual room with everybody else. So, people from the smaller communities are able to join some of the bigger, established communities so they can realize they’re not alone. For some people, these virtual groups are the first time they’ve ever seen another CLL patient, especially people in small, rural communities.

We think it’s critically important to keep this going, and that’s the feedback we’re getting from patients, that they’re extraordinarily grateful for it. A lot of them like it because they don’t have to drive in the traffic. I live in the Los Angeles area and it can be two hours to get to one of our meetings. People like that they can just get on their laptop and type, type, type and they’re in!

Social distancing measures are keeping people apart, but that hasn't stopped some patients with CLL from finding a new sense of community.  

How Social Distancing Helped Create a Sense of Community Among Some Patients with CLL

Many patients with chronic lymphocytic leukemia (CLL) rely on the outcomes of clinical trials that examine new ways to treat the disease. But with the new coronavirus (COVID-19) pandemic changing the way health care is provided around the country, so too is participation in these trials, according to Dr. Brian Koffman, the co-founder, executive vice president and chief medical officer of the CLL Society.

 recently spoke with Koffman about how clinical trial participation has become more flexible over the course of the pandemic in an effort to keep immunocompromised individuals like those with CLL safe, by utilizing things like telemedicine and localized care to avoid exposure to the virus.

What I think we’ve learned from how COVID-19 has impacted the treatment schedules for people (with CLL) is that we can be more flexible. That there are a lot of things we can do with a telephone call or with a Zoom or Skype visit like we’re doing right now where we don’t have to get together in person.

Obviously, you can’t feel a lymph node over the TV or computer camera. But, a lot of stuff can be held. And what we’re seeing is that a lot of clinical trials are delaying, postponing some of the in-person meetings, letting people go (if they absolutely need lab work) to local labs to get things done, or just handling it with a telephone call.

Now, obviously if something is happening: you’re running a fever, the disease is taking off, there’s new symptoms, then you’re going to have to go to the clinic. But a lot of this stuff can be handled with a phone call or with a Zoom or Skype-type interview.

And that’s what’s happening for a lot of people, is they’re rescheduling. Because, really, if they can keep us vulnerable patients out of the hospital, the benefits of seeing the doctor personally may not outweigh the disadvantages or risks of walking through the hospital, which is where everyone who’s got a respiratory illness is going to be.

The COVID-19 Pandemic has changed immediate treatment for patients with chronic lymphocytic leukemia, but it is also impacting the clinical trials looking to improve the future treatment for these patients. 

Brian Koffman

How Patients with Chronic Lymphocytic Leukemia Are Equipped to Handle the COVID-19 Pandemic

How Social Distancing Helped Create a Sense of Community Among Some Patients with CLL

How COVID-19 Has Impacted Clinical Trials for Chronic Lymphocytic Leukemia

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