Estelamari Rodriguez, M.D., MPH: I want to take you back to when your husband was getting treatment. Quality of life, for us, is really the reason why we take care of patients because lung cancer patients are living longer, but you have to have good quality of life. Everything that we add has to be something that is meaningful and adds good life to patients. How did the treatments he received affect his quality of life? What things did you and your husband have conversations about, and what priorities were you making to maintain that quality of life?

Katina Bland: Initially, when he was diagnosed, before we learned anything about the Exon 20 Group, before we learned about clinical trials, before we had access to the drugs that you’re speaking about, we started with chemotherapy, and it was difficult. It was very taxing on my very strong and healthy husband and it was crippling to the point that quality of life was decreasing. I remember my husband specifically asking friends and family to pray for him to feel like himself and not feel like a cancer patient. He didn’t want to lose his identity in the battle and just be about fighting and not about living. We experienced that. Once we were accepted on a clinical trial, once we got access to the medication, life began to feel normal for him again. He could attend our children’s activities and sporting events. He could—wow—remarkably, he could sing again. He could enjoy the things that brought him joy, like making his famous tacos for the family and going on boat rides with us. He learned to surf with the kids. He could be active and be out and make those beautiful memories with our family that we will always cherish. That became the highlight of every day in our journey, rather than fighting cancer being at the forefront.

Estelamari Rodriguez, M.D., MPH: Thank you for sharing. I love how your face lit up when you were describing these memories. I really think quality of life is something that the patients need to lead, and why it’s so important to share these decisions. Especially now that we have different options for treatment for EGFR 20 insertion, the patient can take a lead in terms of how they prefer to get the drug, what the priorities are for the patient, if they favor going into the cancer center so they’re monitored and they make sure they get their drug because it’s IV [intravenous] and is being administered. If they have an infusion reaction that’s bad, they can deal with it, or they may want to have the freedom of having an oral pill that is once a day, which is mobocertinib [Exkivity], and maybe they can travel for the summer, taking this pill, and not have to come in as often. There are a lot of decisions that doctors can’t make for patients. Patients need to have this conversation together about how these drugs work, what potential side effects they have, what works for them, and what works for their quality of life.

I think that really would improve adherence, and ultimately, patients who are feeling better do better. I do think that making the right decision for each patient is a conversation. I wanted to highlight the toxicity because even the oral pills have some toxicity. Even with traditional chemotherapy, we have patients who are going to have hair loss, but they’d rather not. We may have a patient who is going to have a rash because they’d rather not get a drug. All these decisions may be different for each patient. I wonder, regarding how your husband dealt with the side effects and how he managed, what was more important at that point?

Katina Bland: My husband always wore his hair short. He had beautiful hair, but he always cut it off and wore his hair in a bald style. He had never truly been bald until he had gone through the regimen of the chemotherapy. He truly was bald. He had a really great sense of humor about it. He joked about it and talked about all of the time that he got back from not having to cut his hair. He made these beautiful videos of himself throughout his experience during treatment and shared that with family and friends so they were aware of his clinical trial experience, his side effects, his battles, challenges, and the victories that we had experienced. That was a beautiful piece of him that he left with us to still revisit and enjoy.

One of the things I wanted to make mention of, Dr Rodriguez, is you mentioned traveling on a patient’s own terms with their family, not necessarily having the burden of traveling to gain access to medication. One of the things that we are really pushing to highlight and pushing forward at the Exon 20 Group is the idea of decentralization of clinical trials, which means we don’t want the patient to have to travel unnecessarily just to gain access to their medication, especially if they’re seeing that the medication is working. We’re hoping to aim to empower the patients as well as their local community oncologist to run clinical trials. Those clinical trials become something that’s a lot more open to the public. There are a lot more of them in the community. Then, that particular local oncologist who let’s say that patient had been seeing for months or years, the patient can keep that particular oncologist and they themselves can submit a request for expanded use for their patients. The patient doesn’t have to travel here and there just to gain access to a medication. I think that begins to enable patients to advocate for themselves and be treated near home with their families so that they can spend more quality time again living, and if they choose to travel, that travel is going to be for and with family. It would be for enjoyment and vacation purposes and not necessarily the burden of traveling just to get to the much-needed medication.

Estelamari Rodriguez, M.D., MPH: Thank you. I think that’s something that we definitely have to envision a new way of doing research for because right now there are a lot of barriers. Distance travel is one of them, but so is the time that it takes to get lab tests and come back for a routine exam and another visit for an EKG [electrocardiogram]. We need to rethink this. That’s part of the reason why our trials are not very representative of minorities and the population, because they put the burden on patients to participate and we have to envision a different way. I think that one thing we learned during the COVID-19 pandemic is that we can take care of very complex cases and seek patients virtually, which we never thought we could do safely. I have clinics in which 50% of the clinic is all telemedicine. In a way, having the option of doing virtual visits, you could see patients more often. You can talk to their family members and you can talk to their children. I think that’s something that we can all look ahead to, and I’m glad that your group is taking the lead on that because the patient advocates have a lot out of power to really demand that things change because the system can be very slow.

Transcript edited for clarity.