Katina Bland: I feel that there are some glaring unmet needs that we as a community should address and focus on combating. For example, LMD, which is, as you know doctor, leptomeningeal disease. Unfortunately, LMD was a battle that my husband and I, alongside our medical professionals, had to overcome. It basically means that the cancer that was in my husband’s body crossed the blood-brain barrier and began to affect his brain, which could lead to very rapid decline in a patient. That is something I feel we need to bring awareness to, that the medications should and could cross the blood-brain barrier so that they can go after this monster of a disease wherever it tries to hide. We really need new therapeutics to accomplish that.

Estelamari Rodriguez, M.D., MPH: Thank you for sharing that because that’s truly an unmet need. Many trials exclude patients with leptomeningeal disease because we are not confident the drugs will penetrate, and the trials the way they were designed want to see a response fast. Patients with LMD have been unfairly excluded, and we need trials and drugs that penetrate the blood-brain barrier better and are effective. We have seen from the EGFR story over time, we have patients who have done remarkably well systemically, all over their body except for the brain. That’s really where we have failed patients, so I agree with you, that’s definitely an area of more research. Also, finding treatments that are better tolerated is going to be another area where patient advocates have a say. I think that when we develop drugs, we’re looking for the more potent drug, but sometimes the more potent the drug, the more potent the side effects. There’s a happy medium that the laboratory doesn’t get right, but the patient will get right. We need more experience with that as well.

Katina Bland: That’s the need for that partnership. Another great disparity or unmet need is that we are finding that, in our historically underserved communities, there’s so much underdiagnosis or misdiagnosis that’s happening. Quite a bit of that, I’d say, is attributed to a lack of health literacy across the board, and I would love to focus some light in that area. I know you spoke to that a little earlier with regard to having some health equity there in all communities. I just wanted to bring attention to that again, and agree with you on that point.

Estelamari Rodriguez, M.D., MPH: I think that people are looking at this closely, but it’s been there from the beginning. We know that not all patients are offered every option, and sometimes it has to do with some biases in the interaction, and there’s lack of health insurance and lack of health literacy. All these things play a role, and we need to do a better job to make sure that resources are equitable. I think biomarker testing is really at the core of this.

Katina Bland: Absolutely.

Estelamari Rodriguez, M.D., MPH: Once that is covered like other things are covered, like your CT scan is covered, then we should be able to demand that it’s equitable, that we at least identify all the patients. I will say that, at least in the United States, we have access to these drugs. I tell my patients, these drugs are really expensive and it’s sticker shock, but in this country today, we have great compassionate use programs and we have great patient assistance programs. Regarding the patients I take care of, I can get the drug for all our patients. Now, if I never identify the driver mutation and never knew I needed this drug, then I would never get it. However, for the ones who need it, once you identify them, the pharmaceutical industry is really committed to making these drugs available, and that I can speak to. We see it every day that patients need drugs and we can get those drugs for them.

Katina Bland: That’s a wonderful thing for all of us here in the United States and abroad; once we identify what medication needs to be prescribed to the patient, there is a process to get that drug to that patient who desperately needs it. I think more attention needs to be given to the local community oncologists to educate and equip them to be the captain of their patients’, I suppose I’d say vessel, with regard to making sure that they let them know about the clinical trials. If they are not made aware of the biomarker testing and the clinical trials, then they’re going to miss out on an opportunity that they would otherwise agree to. However, you can’t agree to something that you either don’t know about, or you haven’t had an opportunity to have your questions or concerns about any risks addressed by the doctor, or if you don’t yet know about the benefits for doing such a thing.

Estelamari Rodriguez, M.D., MPH: Definitely. I think patients should question their doctors and should question the plan that is being offered. I recently saw a young nonsmoker, a very young patient, with extensive lung cancer. The initial test that was provided to us showed no driver mutation, and that made no sense to me. The patient questioned the doctor, and he came to us, and we did another biopsy. We actually did a liquid biopsy, which is a blood test, which could have been done from the beginning. Sometimes either the test gets it wrong, or the biopsy specimen doesn’t get to that clone of cells that has that mutation. Patients who are younger, and every patient who has a very limited smoking history, should have a very in-depth test, and sometimes it requires another biopsy because it makes a big difference for patients.

Katina Bland: Absolutely. For the patients who are listening, family members, care partners, as well as clinicians, I again send out an invitation for you to join with us at the Exon 20 Group. Our website is exon20group.org. We welcome your partnership in providing services that you may or may not have access to, and in extending patient care, quality of life for patients, and in defeating this disease. We need everyone in our global community working on and toward this effort. Thank you so much, Dr. Rodriguez.

Estelamari Rodriguez, M.D., MPH: Thank you, Katina Bland, for joining me today and for sharing your valuable perspective as an advocate and as a caregiver. To our viewing audience, we hope you found this Cure Expert Connections® program to be informative and rich, and that it helps open conversations for you and your families and your communities. Thank you so much.

Katina Bland: Thank you.

Transcript edited for clarity.