Why is this program so important?
Interstitial lung disease is a complex disease. It’s relatively rare. We haven’t always known what to do for it.
ILD programs have traditionally been academic, focused around research. We are very much focused around research, but we now recognize the need to also make sure we are delivering top-quality care.
Since ILD can be hard to diagnose, it must be a relief for patients to finally get a diagnosis.
One of the key things we offer is a comprehensive diagnostic approach. There are lots of different diseases we have to distinguish between, and that’s complex and requires input from people – radiologists looking at X-rays or pathologists looking at tissue samples under the microscope. Integrating all that is not easy. It requires a lot of time and the ability to pull people together.
Academic centers like UCSF offer that capability. Figuring out why patients have this condition not only directs their therapy and expectations, but it’s also inherently helpful and reassuring to people to know what’s happening, even if the news isn’t great.
Many ILD patients aren't able to breathe easily, something most of us take for granted. What's it like to go through life not being able to breathe well and not knowing why?
I can’t possibly know that, but just observing them, I think it’s terrifying to not be able to catch your breath and not understand why. It’s both physically and psychologically uncomfortable. Patients have to deal with this every second of their lives, so not understanding what can be done about it is really, really difficult.
How do you keep your team inspired?
Patients are remarkably resilient and brave, and interacting with them in the clinic is really all the motivation most of us need.
What have you learned from your patients personally?
One of the biggest things is the remarkable strength of individuals who are suffering from not just physical disease but also fear of the unknown. You see that strength but also that suffering. Your natural inclination is to gain motivation from that and push to relieve the suffering.
I was at a conference a couple of years ago where we were talking about progress in lung fibrosis and we said, “If you look back over the last 10 years, we’ve made important progress. We don’t have a cure yet, but we should feel pretty good about this.” A patient in the audience stood up and said, “With all due respect, there is an urgency here that means I don’t want you to be comfortable with this progress.”
I always remember that. Not to belittle the progress we’ve made, but there is a real pressure to keep moving. That’s I think what UCSF tries to do through this program.
At UCSF, some patients with incurable forms of ILD have the option of taking part in research trials for new treatments. Why is that kind of research so important? What does it offer patients?
I view research as a clinical tool. Research is clearly beneficial to the larger community, but I also think for individual patients, being involved in research is a positive force in their lives. They feel like they are gaining some measure of control back that their disease has taken from them.
They are doing something proactive, even if it’s not clear if it’s going to benefit them directly.
That patient dedication is impressive.
I try to help patients understand that without their investment and active involvement in research, we’ll never get anywhere.
Some of these conditions we have treatments for, but many of them, even with treatment, continue to get worse. Unless patients are willing to participate, we are never going to advance medical knowledge and find treatments and eventually cures.
There's a sense of hope in the ILD program. What are you excited for?
I’m very optimistic about the future. I don’t think it’s going to be quick or easy, but if you look at the last 20 years and the progress we’ve made in understanding disease and delivering care, that trend is the right one, and I see no reason why it should change. I hope it will accelerate as we can harness new approaches to understanding the biology of disease and apply that clinically. To me, that’s the real frontier in ILD research: using technology to understand individual biology and then aligning therapies with the disease process active in an individual.
How has UCSF allowed you to achieve some of these goals?
UCSF is remarkably committed to discovery and academic freedom. That’s what you need from an institution, and they provide a tremendous amount of support and infrastructure that helps us take those ideas and implement them. The people here share that culture. I feel very lucky to be here, to have the opportunity to do these things. The university helps and shares the overall vision.
How does being in a university hospital affect the program?
The real strength of a university hospital is the trainees and mentees we work with, because it brings in a continual stream of young, motivated, smart people who look at things differently than I do.
It’s only by looking at things through a new lens that you have those ideas that maybe don’t fit into the typical paradigm, but can end up changing things, and I’ve seen that repeatedly.
How does the focus on patient care help the patient healing process? How does it help the program?
A really important quality of our program is that we have the time to listen. The reality of medical care is that patients have a very short period of time to spend with the physician. That’s incredibly frustrating for everybody involved, and one of the results is that most doctors really don’t have time to listen in depth to the issues, particularly with complex life-threatening medical conditions like interstitial lung disease.
Having an hour with a new patient to really listen to what they are experiencing or needing from me is both helpful for their care and motivating for taking those needs and looking at them from a research perspective – trying to figure out ways to relieve those needs, not only for them but for the larger patient population.
It's interesting that so much comes from just having the time to talk to patients.
Time is so important. My sense is it’s disappearing in a lot of medical care. I’m lucky that UCSF supports us having that amount of time to really focus on patients.
It’s a commitment, too: to enter into a long-term relationship with these patients.
It’s a commitment. This is not a one-time solvable issue. These are long-term diseases that require attention and follow-up and reassessment, sometimes for life.
I feel blessed to have this job. The chance to work with people, to help them directly in the clinic when possible, and to creatively think about how to move medicine forward, working with a great group of people – and supporting them so that they have the opportunity to do that – is a privilege. I’m pleased with where we are, but I have a real sense of urgency to keep growing, doing more and making more progress.
