ALK Positive at ASCO 2025: Ken Culver, MD, Reflects on Experiences, Importance of Patient Advocacy

Ken Culver, MD, director of Research and Clinical Affairs at the ALK Positive patient advocacy organization, joined Lung Cancers Today at the 2025 American Society of Clinical Oncology (ASCO) Annual Meeting to discuss the group’s work and experiences at ASCO.

“ALK Positive is a patient-led, patient-founded, patient-run, and patient-funded organization that’s purpose is to drive research and increase the opportunities for a cure sooner rather than later,” Dr. Culver said.

This makes it critical for the organization to have a presence at the ASCO Annual Meeting, he said, as it’s “where the world gathers to talk about the latest advances.”

For example, at ASCO 2024, there was a major development for ALK-positive non–small cell lung cancer (NSCLC), with the phase 3 CROWN trial of lorlatinib showing an “amazing long-term benefit of the drug in the first-line space,” Dr. Culver said.

However, at ASCO 2025, there haven’t been “any major breakthroughs for ALK therapies like last year,” Dr. Culver explained, noting that many immunotherapy trials do not include patients with ALK-positive disease.

“This seems to be based on the fact that the initial trials with pembro [pembrolizumab] and nivo [nivolumab] were negative in ALK patients, despite the fact that many of them are PD-L1 positive,” Dr. Culver said. “But we have to remember that just because a patient doesn’t respond to one checkpoint doesn’t mean any of the other 70 checkpoints might not be relevant. We’re hoping that there’ll be new opportunities for our patients, especially in the immunotherapy space. I think most of us believe that without an effective immunotherapy as a part of the treatment regimen, we’re not going to get to the cure.”

Dr. Culver also spoke about the importance of having a patient advocacy presence at ASCO 2025, explaining that the group works to meet with biotechnology and pharmaceutical companies to shine a light on the sense of urgency surrounding research for ALK-positive NSCLC.

“I witness it over and over again. It’s a mutual benefit. The patients see the energy—the bright minds that are trying to solve cancer therapy and to get us to a cure. But also, a lot of the people working in these corporations don’t normally get to have much interaction with patients, so I think it’s inspirational to them,” he said. “I’m hoping that there’s sort of a synergy that comes out of that. It’s not just good feelings. It leads to tangible improvements and new opportunities for our patients, and I do believe that is happening.”

Beyond meetings with these companies, the ALK Positive organization also held a meeting to bring its scientific advisory board (SAB) together at ASCO, focusing on the key actions that physicians should take when a patient’s disease progresses.

“They’ve been giving us a lot of great advice. We also have our own internal research program. We’re trying to identify new drug targets, looking at bulk RNA seq [sequencing data], and they’ve been providing us some great guidance and collaboration,” Dr. Culver said. “Finally, working with our SAB, our goal is to start a number of investigator-initiated clinical trials this year that are funded by our patients. We’re partnering with the companies and with the universities, because if we can get the pilot data for those particular drug combinations now, hopefully, companies will take them on and develop them for the larger population.”

He explained that ALK Positive is focused on starting as many of these trials as possible.

“Our goal as an organization is to help those trials enroll very quickly because we realize for the companies, time is money; and we realize for patients, time is life.”

To learn more about ALK Positive, visit https://alkpositive.org/.