Prof. Lewis J. Rubin with Kamil Hamidullah, immediate past President of the PAHSSc
This interview was originally published in Turkish on Nefes, the magazine of the Turkish Pulmonary Hypertension Association PAHSSc in December 2021.Our sincerest thanks go to our friends and colleagues at the PAHSSc for graciously allowing us to republish this interview and share with the wider pulmonary hypertension community!
Click here for the Turkish version on the Nefes magazine, pages 36-39
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Emeritus Professor Lewis J. Rubin, MD. is one of the forerunners and the most prominent doctor in the field of Pulmonary Hypertension. He is the recipient of the Dickinson Richards Memorial Award from the American Heart Association as well as being listed among Thomson Reuters’ most influential researchers in the world in 2014. Doctor Rubin received the Chest College Medalist Award in 2015 and has also received the European Respiratory Society (ERS) Award for lifetime achievements, advanced research in the field of arterial hypertension in 2017.
As for Turkey, pulmonary hypertension treatments first started with Doctor Lale Tokgözoğlu and with his support. For our pulmonary hypertension history, Professor Rubin’s name has a special significance.
Professor Rubin, thank you very much indeed for sparing the time for an interview.
1. Could you give some information about yourself? What triggered your interest in this field even when nothing was known?
I am presently Emeritus Professor at the University of California San Diego and Adjunct Professor at Columbia University in New York. I was strongly influenced by my training in Medicine at Duke University, where I was taught by outstanding physicians and scientists who were mentors and supportive of my interests. I first became interested in pulmonary hypertension when, as an intern, I was responsible for the care of a patient with pulmonary hypertension: I knew nothing about this condition and the Textbook of Medicine, which was edited by my Chairman, had only a brief paragraph on it. I consulted with one of the Cardiology professors for information, and thus began a collaboration that guided me through a field that didn’t really exist at the time.
2. It was rather difficult for the patients to get diagnosis in the past. Presently, is it as difficult? What problems are being encountered?
It remains challenging, although better than it had been previously. A great deal of interest among physicians emerged with the advent of targeted therapies of PAH, with many important studies and reviews published in high-profile medical and scientific journals. The developments in non-invasive testing, particularly echocardiography, has also increased ease of diagnosis. But early diagnosis still depends on individual physician’s level of awareness and knowledge.
3. Is there a national registry system for pulmonary hypertension in your country? If there is how beneficial is it for the field?
The first major pulmonary arterial hypertension registry in the world was initiated in the United States in the early 1980s, and provided critical knowledge regarding the clinical features and natural history of this condition. Subsequently, there were several registries in the US, including the REVEAL registry, that provided contemporary information regarding the diagnosis, clinical features and outcomes. Other international registries, including those from France, Spain, Scandinavia, and Germany have more recently provided incremental knowledge regarding pulmonary hypertension, and paediatric registries from Europe have provided much-needed information from this important group.
4. Even long ago you advocated that the best treatment could be made through fully equipped multidisciplinary centres frequented by a high number of patients? Is your opinion still valid?
Absolutely, and even more so as the management of patients has become more complex, with medical therapies, surgical and interventional approaches advancing rapidly. However, the local physician plays an important role, particularly in geographic regions where expert centers may be quite a distance away, by being at the front-line for patients and maintaining close contact with the staff at regional centres.
5. On the other hand, is there room for any kind of improvement given by first step healthcare organizations as regards diagnostics, treatment and follow-up? Our country is well spread out geographically and there are extensive differences economically. Would you have any suggestions for Turkey?
This remains a major problem worldwide, although many Western countries have provided government support to establish regional, and national centres. Of course, these programs are expensive, but it’s clear that current therapies improves quality of life and prolongs life in many cases. In countries like Turkey, not every center needs to be a fully comprehensive one; perhaps defining several levels of expertise through local training programs for interested physicians can facilitate the creation of regional centres capable of diagnosing and managing many patients and referral of the most complex, challenging patients to the major centres.
6. According to you should a patient be well-informed on the illness via internet and other means of mass-media? Some patients are discouraged whereas others feel more secure. Some doctors may not prefer the attitude of patients’ being equipped with information from other sources. As an expert could you tell us how a patient could balance information from other sources and actual information given by his doctor on his illness.
An informed patient is one who can, and should, participate in their own care and decision-making, but they should be aware that there is no validation or verification of much information on the internet. Reliable sources of information for patients can be found on websites of national and international societies and information brochures prepared and provided by expert centres. Physicians need to spend time with patients to address their questions and concerns in a compassionate manner.
7. What do you think is the importance of patient associations?
These associations are very important sources of information, support and potentially gaining access to centers of excellence and clinical trials.
8. Have you even paid a visit to Turkey to see your patient?
I have visited Turkey several times to give lectures to Turkish physicians and have had the opportunity to visit with former patients. I have also had the pleasure to do so in other countries from which I have had patients referred to me for care.
9. Doctor Lewis do you remember the first pulmonary hypertension patient you diagnosed?
I do. She was a patient with scleroderma and pulmonary hypertension, and she participated in the first clinical trial I was engaged, in the late 1970s.
10. Could you possibly share a patient story which would set high hopes for a patient?
When I first developed an interest in pulmonary hypertension, the diagnosis was a death sentence – there were no effective therapies and most patients died within a year. Now I look forward every year to getting birthday wishes from patients who I first began caring for many years ago who have benefitted from the hard work and dedication of the many doctors, scientists and nurses who have devoted their careers to fighting this disease, and who continue to do so.
11. What developments have been achieved for pulmonary hypertension patients in the last decade?
Several new therapies and the acceptance of centers of excellence that optimizes patient care.
Do you think there will be an almost full cure in the future?
I certainly hope so. But we should remember that this is a complex illness and it is unlikely that there will be a single “magic bullet”. Combinations that target several processes that are involved in the development of pulmonary hypertension will likely be the most successful approach.
12. Do you reckon COVID-19 has had an effect on pulmonary hypertension? Most meetings have been/are being held on-line. Do you believe this on-line practice including ‘patient calls’ has had a negative or positive impact?
I think this approach has applied 21st Century technology to education and patient care. However, no technology can replace seeing a patient in the clinic or interacting with professional colleagues at educational meetings.
13. What are your views on lung and lung-heart transplant for pulmonary hypertension patients?
Surgical approaches and immunosuppressant therapies have improved dramatically over the past several decades, but organ availability continues to be a major limitation to more widespread availability. Thankfully, as more patients have access to and derive greater benefit from medical therapies, those requiring transplantation because all other therapies have failed will not increase further. There is also hope that xenotransplantation (organs derived from animals) may provide alternatives as well: Scientists just recently published encouraging results transplanting kidneys from pigs into humans with kidney failure.
14. What recommendation would you give a patient who has recently been diagnosed with the disease?
You are not alone. Seek information and support from patient groups, find the best doctors in your region with expertise in managing pulmonary arterial hypertension, and take an active part in your care.
15. What advice would you give doctors who have recently begun their profession and who are dealing with pulmonary hypertension?
This is an exciting and demanding field, with new developments on the horizon and many challenges and opportunities. And caring for pulmonary hypertension patients is an enormously gratifying way to experience a career in Medicine.
16. Professor Rubin, if you have any other comments please do not hesitate to add them.
Over the course of my career I have witnessed tremendous developments in the field of pulmonary vascular medicine. But there remains much more work to do until we can effectively treat all patients with this condition. I am confident that future generations of physicians and scientists will continue to dedicate themselves to pulmonary hypertension patients’ needs in with the same focus and passion that my colleagues and I have experienced in our careers.
We thank you with all our heart once again for having given us some of your precious time for our Pulmonary Hypertension and Scleroderma Patients’ Association.
It has been a privilege and pleasure. Best wishes to all.
Lewis J. Rubin, Emeritus Professor of Medicine, University of California, San Diego School of Medicine, La Jolla, CA, Adjunct Professor of Medicine, Columbia University College of Physicians and Surgeons, New York, NY
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