Podcast: 75 Years of Progress: Part 2

Full Transcript:
Released 5/30/2023

PODCAST OPEN:            
You’re listening to the Live Yes! With Arthritis podcast, created by the Arthritis Foundation to help people with arthritis — and the people who love them — live their best lives. If you’re dealing with chronic pain, this podcast is for you. You may have arthritis, but it doesn’t have you. Here, learn how you can take control of arthritis with tips and ideas from our hosts and guest experts. 
         
MUSIC BRIDGE 

Steve Taylor: 
Welcome to the Live Yes! With Arthritis podcast. I am Steve Taylor, president and CEO of the Arthritis Foundation. And I will be your host for a three-part series commemorating the 75th anniversary of the Arthritis Foundation. 

This is part two of our special podcast series honoring the Arthritis Foundation's hallmark anniversary, where we look back through the years with a couple of our superstar volunteers. 
 
Today, I'm joined by Dr. Rowland (Bing) Chang. Dr. Chang is a rheumatologist, epidemiologist and professor at Northwestern University's Feinberg School of Medicine. He specializes in arthritis and joint diseases, and he has seen firsthand the advancements made in arthritis research and clinical care. Dr. Chang works with patients in Chicago's Shirley Ryan AbilityLab. He's been a member and leader in the NIH-funded Arthritis Center since 1982. And his involvement and support of the Arthritis Foundation as a volunteer spans almost 40 years. 
 
Dr. Chang has also chaired our national board of directors at the Arthritis Foundation and helped to launch initiatives, such as revamping our clinical fellowship programs to cultivate a much-needed new generation of rheumatologists. He has helped lead our advancement in osteoarthritis research, and he's also helped us to accelerate and lead research in conquering childhood arthritis. It is such an honor to have you with me, Dr. Chang, today. 

Rowland W. (Bing) Chang, MD, MPH: 
Very, very, very good to be with you, Steve. 

Steve Taylor: 
I, as you know, have been in the field of rheumatology — not working as a rheumatologist, but working in nonprofit rheumatology — for a long time. And I always love asking rheumatologists how they got involved in rheumatology. Did rheumatology pick you? Did you pick rheumatology? 

Rowland W. (Bing) Chang, MD, MPH: 
Well, it turns out, my favorite uncle grew up with a disease that we now know as ankylosing spondylitis. We knew that he had some form of arthritis. And it turns out my mom also probably had ankylosing spondylitis as well. She had problems with her hands, but most notably with inflammation in her eye. She had iritis, which is a common extra-articular manifestation of ankylosing spondylitis. 

That disease ran in our family. I was particularly interested in it just from a familial perspective. But then, when I got into medical school, immunology was starting to become a much more prominent field in medicine. And I was interested in that. And there was a definite connection between certain inflammatory forms of arthritis and immunology. So, early on, I knew pretty well that that was the area I was going to specialize in. 

Steve Taylor: 
That's so neat. I worked, as I mentioned, around rheumatologists a long time. And I always, you know, refer to them as the Sherlock Holmes of diseases because rheumatology's putting all those puzzle pieces together. What do you tell young medical students about rheumatology and why they should consider it? Especially, I know you’ve been so instrumental in our fellowship program. What do you kind of tell them are some of the best parts of being a rheumatologist? 

Rowland W. (Bing) Chang, MD, MPH: 
Well, as opposed to some other kind of more populated areas, like cardiology and gastroenterology, there's still a lot to learn in rheumatology. There’s a lot of people that can benefit from further advances, and from people like us in rheumatology, who are really committed to the care of folk with arthritis and related diseases. So, there's a lot of opportunity to do good. 

It's a great field to develop long-term relationships with patients. Because these are chronic diseases that we don't yet have a cure for, and require ongoing, longitudinal care. There are actually a lot of young physicians who are interested in that, those areas, and probably also interested in an area that doesn't require you to be on call 24 hours, seven days a week, 365 days a year — for fear of something happening suddenly bad to your patient. 

Steve Taylor: 
And of course, you spend more time in a patient's room than a lot of other specialists who are in and out in six to eight minutes. You're with patients a lot longer. And so it takes an interesting bedside manner and ability to really build that relationship as a partner with the patients 

Of course, I introduced you as Dr. Rowland (Bing) Chang. and I'm going to call you “Bing” by accident… No disrespect, of course, Dr. Chang, but that's how I know you. But I do know that there's a reason that you got that nickname, “Bing.” And so I wanted to ask you if you wouldn't mind sharing that. 

Rowland W. (Bing) Chang, MD, MPH: 
When I was growing up, I was kind of a toddler, a preschooler, in Minneapolis. And my friends just, you know, they didn't resonate with Rowland. Somebody just started calling me Bing, and it stuck. It turns out to be a reasonable nickname in Chinese as well. So, it's not just Americans that call me Bing. All of my Chinese relatives also do, too. 

Steve Taylor: 
Tell me a little bit about your medical training and your medical school experience, Bing. 

Rowland W. (Bing) Chang, MD, MPH: 
I did a rheumatology elective rotation when I was a medical student at Tufts at the Robert Breck Brigham Hospital, which at the time was one of the two rheumatology, maybe three, rheumatology/orthopedic hospitals in the country. And this was at a period of time where there was no really important treatment for rheumatoid arthritis. 
 
So, people with rheumatoid arthritis, whose joints were severely impaired, were there primarily for rehabilitation and joint surgery. It was a hundred-bed hospital that almost always filled with people with rheumatoid arthritis. Or folk that had, you know, needed joint replacement surgery for other reasons as well. That was a really unique experience in rheumatology as a medical student. 

I did another elective as a resident when I was a medical resident at Mount Auburn Hospital and eventually ended up at the Robert Breck Brigham, as a fellow. By the time I became a fellow, they had merged with the Peter Breck Brigham and the Boston Hospital for Women; now Brigham and Women's Hospital. So, I was one of the first fellows actually trained at the Brigham and Women's Hospital. 

Steve Taylor: 
And how did you end up in Chicago in your career? 

Rowland W. (Bing) Chang, MD, MPH: 
I actually extended my time at the Brigham to finish a master’s in public health at the Harvard School of Public Health, before moving to Northwestern. And, you know, we got our NIH grant the year after I arrived. and as they say: well, the rest is history, you know? Northwestern has become a very prominent cog in the rheumatology wheel of American rheumatology over the last 40 years. 
 
Steve Taylor: 
For sure. And surely, the patients have benefited from you being there. I know you've been a big proponent for patient engagement and patient support, making sure that the Arthritis Foundation has always been focused on making sure the patients are involved — from their thoughts, their ideas, what they want. But how did you get involved in the Arthritis Foundation? 
 
Rowland W. (Bing) Chang, MD, MPH: 
Yeah, that was because of an eager staffer by the name of Ann Robinson, who turned out to have had horrible rheumatoid arthritis and was on the staff of the local chapter at that time, the greater Chicago chapter of the Arthritis Foundation. She was very resourceful and kind of energetic. And persuasive in getting young rheumatologists to be involved in Arthritis Foundation activities. Which I think is something we’ve got to try to rejuvenate. 

Steve Taylor: 
What are some of the early activities you remember that you were involved in? 

Rowland W. (Bing) Chang, MD, MPH: 
Well, the first activity was actually on the advocacy side. The Foundation, in the mid- to late-'70s, began an advocacy organization. And chapters started sending volunteers to Washington to talk to congressmen and senators about issues pertaining to arthritis. Always one of the issues was arthritis research. And it turns out the NIH didn't have an arthritis institute until lobbying from patient-centered organizations actually began. 

So, that was the first national kind of area that I was involved in. And then over the course of time, I've been involved in research, the research activities, patient services activities. And then in the mid- to late-'90s, kind of a new public health initiative came on board, and I was part of that, since I was public-health trained. There weren't that many professional rheumatologists who were also interested in public health, but I was one of the few that were interested in that area as well. 

PROMO: 
This year, the Arthritis Foundation recognizes 75 years of progress for the arthritis community. Over the years, we’ve led the way in major achievements, from training rheumatologists, advancing joint replacements and introducing biologics and other breakthrough treatments — to providing life-changing educational programs and resources, like this podcast — to successfully advocating for better health care policies and laws. All to improve quality of life for the nation’s nearly 60 million adults and 300,000 children living with arthritis. Thank you for your support during 75 years of progress. And see how far we’ve come in our interactive timeline at https://www.arthritis.org/about-us/history. 

Steve Taylor: 
Advocacy is such an important avenue for us at the organization, and it has been, you know, in our history for 75 years. I think people listening, you know, encouraging them to step up and tell their story… I always appreciate those that are willing to share their story, either just amongst family and friends, or even on state capitals or in Capitol Hill here in Washington, D.C. It’s so important that our patients are willing to step up. 

Do you want to just share a little bit how important that story is when you're visiting with a congressman or senator? Just because the changes we've made over the years, from funding for NIH institutes to more research dollars to knocking down barriers, the patient stories, you know, really make the difference. And I'm sure you’ve been in those rooms when patients are sharing. How important are those to what we do? 

Rowland W. (Bing) Chang, MD, MPH:  
Yeah, they're really extraordinarily important because of general lack of knowledge about arthritis and rheumatic diseases. I think people are astounded to hear that there are more kids afflicted by juvenile arthritis than by type 1 diabetes. Nearly 300,000 children have some form of active inflammatory, oftentimes destructive and disabling disease. 

The fact that people don't know about it, when you tell them, and actually even when you see a person, you know, a child with arthritis and see how difficult sometimes life is for them. That does change minds, right? And it's important that we try to kind of keep our foot on the pedal to raise awareness even more than it is right now. 

Steve Taylor: 
I think you're so right, Bing. The idea of making sure people understand the sense of urgency of the disease, the breadth and depth of the disease, how it permeates through a whole family, through a person's career, through their personal life, is so important. We can't make those decision-makers understand that without that personal experience. So very, very important. 

Obviously, we're here talking a little bit about our 75th anniversary, and you hit some of the highlights of advocacy. But where do you think some of the interesting milestones have happened over your career in regards to patient care on the clinical side? What do you think are some of the biggest breakthroughs over those years you've been involved in have changed the lives for patients? 
 
Rowland W. (Bing) Chang, MD, MPH: 
Probably the most pervasive improvement in treatment really pertained to the use of biologics, now almost 30 years ago. That was a game-changer. So just consider when I was a fellow at the Brigham in the early 1980s. Really, the only medicine that we would prescribe would be injectable gold. And the new kind of treatment was an oral compound of gold that caused diarrhea in everybody. Maybe safer than injectable gold, but maybe not so much more effective. 

Then we started to borrow from the dermatologists the use of methotrexate for people with inflammatory arthritis. Because it seemed to not only help people with psoriasis with their skin disease, but if you happen to have psoriatic arthritis, it happened to help their joint disease as well. Methotrexate was then the next kind of realm, and I think that was a major improvement and led to a major improvement in the lives of our patients. But it wasn't really until the development of medicines like Enbrel and Remicade, the tumor necrosis alpha blockers, that really substantially reduced inflammation to the extent that there was a proportion of folks that actually could look normal. 

If you told a rheumatologist trained in the 1980s that you would be able, at one time in your career, to make your patients feel nearly normal, that was really outside the realm of possibility back in the early '80s. And now, that's what we all strive for now. We're trying to make you normal. I ask my patients at every visit, "How close to normal do you feel?" 

That's a real big paradigm change, I think, for inflammatory arthropathies, right? We still have difficulty treating people with degenerative diseases like osteoarthritis. But as a result of the work the Foundation has done, there is still hope that in my lifetime we will have something substantial to be able to offer to those patients as well. 

Steve Taylor: 
The difference even in the children with arthritis and the pictures from camp and conference years ago, with more wheelchairs and canes and walkers. And today, you don't see them as often, which means we've made huge progress and change. And the same in the adult population. But in the children's population, it's just been amazing to see the difference in those pictures. Really tells a story about how far we've come to change those lives for those kids and those families. 

Rowland W. (Bing) Chang, MD, MPH:  
Indeed, indeed. The Arthritis Foundation was really key in the development of those kinds of therapeutic programs for kids. The ability for the juvenile arthritis research community to really rally around and focus their therapeutic activities, to really try to maximize the scientific advances that we developed primarily for adults, but now apply it to kids, was very much facilitated by the Arthritis Foundation. 

Steve Taylor: 
Since the beginning of the CARRA Registry, we've been very engaged in obviously JA research. And just even since 2015, we've also supported over $30 million in JA research. 

PROMO: 
Want to help grow our movement and conquer arthritis as a volunteer? There are lots of ways to get involved with the Arthritis Foundation and make an even greater difference. To get going, check out https://www.arthritis.org/volunteer. 

Steve Taylor:
Where do you hope that the Foundation's going to be seeing progress in the next five, 10 and 20-30 years from now? Where do you think we have opportunity, and where would you love to see us someday? 

Rowland W. (Bing) Chang, MD, MPH: 
We don't have a lot to offer our patients with osteoarthritis. I was at the last Pathways Conference where, at the medical and scientific advisory committee, it was discussed the development of a clinical trial to try to prevent post-traumatic osteoarthritis, which is really exciting news. 
 
This is a prevention study of people that are high risk for developing osteoarthritis, those who have anterior cruciate ligament injuries that lead to surgery. So, this is a high-risk population that, you know, within five or 10 years, between 20 and 40% of those people are going to develop radiographically-evident osteoarthritis. And a real opportunity for us to try to make headway in that field right now. 

Steve Taylor:
I don't think people realize post-traumatic OA in regards to having an injury and how more likely you are to develop osteoarthritis. People think osteoarthritis is your grandmother's arthritis. It's not necessarily for younger people. And that's not the case. And it's not just post-traumatic osteoarthritis. There are people who develop osteoarthritis being young without injury. 

The statistical likelihood of you developing it after an injury — either a sports injury, military injury, car accident, falling down the stairs — really elevates. And that's why this prevention trial that you mentioned, which we call PICASSO, will be launching in 2023 during our 75th anniversary year, to help see if we can prevent that from happening in ACL injuries to start with. And then, of course, we'll be branching it out to other injuries down the road if it seems to be successful to start in ACL. So, very exciting about it. 

Where do you think we can help, and you'd love to see the Arthritis Foundation lean into, down the road? 

Rowland W. (Bing) Chang, MD, MPH: 
Including the patient voices in policy decision-making is really a critical need for policy in general in this country. You think about health care reform, right? And the actors that are involved obviously include the health system, maybe even physicians, although they're becoming less and less visible and audible in this conversation, I think. The insurance companies and pharmaceutical companies, all of these people are actively engaged in the development of our evolving health system. 
 
But there is no group of patients. There are no patient advocates that are actively involved in the developing of new health care policy. And I think the Foundation, given the fact that it represents such a large proportion of the population, has a really great opportunity of trying to kind of nudge themselves in to these kinds of policymaking arenas. 
 
Steve Taylor:
Yeah. I mean it's so critical that those voices of the patients… But also data we can collect from patients, patient-reported outcomes, where we can tell their story through their own voice, along with data that shows their trajectory of their disease, what medications they're taking, treatment profiles, et cetera, makes a big difference. 

Years ago, Bing, I did a, a survey of patients. And we asked them, for 16 pages, all their symptoms and complications. Could they rake leaves? Could they carry a bag of groceries in the house? Could they drive? Could they work? Could they take care of their young children? Whatever it was. And the statistics on the first 16 pages were devastating. It was an autoimmune disease population just like rheumatoid arthritis. 

But then we asked them to state at the end, we asked them how they'd rate their health. And they said they were good or very good. And reality was, the statistics that we asked them from the first 16 pages suggest they weren't good. They were on disability, couldn't work, couldn't raise their kids. But we're all trained to say we're fine. We're good. 

And people with autoimmune diseases and chronic diseases like our forms of arthritis are saying, "Oh, I'm fine." Because that's what we grew up being taught to do with the disease. And so, it's so important that, yeah, you still want to live with that optimism and that you are fine. But telling your story makes people realize how amazing arthritis patients are, how they're warriors, how they are thrivers with their disease, trying to thrive the best they can and overcome all of the complications they have. 

Rowland W. (Bing) Chang, MD, MPH: 
For sure. Absolutely. 

PROMO: 
The Arthritis Foundation couldn’t do awesome things without your support. Your donation fuels our powerful movement to advance arthritis research and resources, like this podcast and much more. Every dollar makes a difference. Give a gift now at arthritis.org/donate. 
 
Steve Taylor:
I know you're a past Harding Award winner. Obviously, they're our most amazing, tried and true, dedicated volunteers. What did winning the Harding Award mean to you? It's our highest volunteer award in the nation. 

Rowland W. (Bing) Chang, MD, MPH: 
Oftentimes, Harding Award winners are those who have been in leadership positions at the Arthritis Foundation. And I actually got the Harding Award before I was chair of the Foundation. I felt really humbled because, you know, the giants of the arthritis community are bestowed this award. But I guess I felt really validated by the fact that I'd spent a lot of my time and energy, both at the local and national level, trying to advocate and help people with arthritis over the course of my career. 

I think the validation only helps encourage people to continue. At least it encouraged me. because I wasn't yet at the end of my career when I got the award. I continue to volunteer locally, still very actively. And I try to continue my fundraising efforts for the organization. And I try to talk it up amongst my rheumatology colleagues. And try to encourage people to kind of broaden our network. Because I think that's the key thing, over the course of time, is to use your influence to influence more people to become active in the organization. 

Steve Taylor:
That's interesting because I didn't know that background, that you received it even before some national roles. And you've been in just about every officer role we have at the organization. I've heard your name for years. Even before I joined here, I knew your name. Seeing firsthand how Bing Chang's fingerprint is on so many different things that we currently still do or that are building upon things that you helped put your fingerprint on. 

I can't thank you enough on behalf of the patients for that because your name and legacy continue. When you look back at your career, as chair and treasurer and all the things you did at the national level and locally, where is the one thing you would look back and say, "Wow, I was really proud that we did this, or I did this." What would that be? 

Rowland W. (Bing) Chang, MD, MPH: 
It's a very hard thing to pick because there are several things that have happened. I've already mentioned the connection with CARRA, the juvenile arthritis community. I'm hoping that our connection with the public health community over the course of time will further develop. As a result of that initiative, there's a CDC, or Centers for Disease Control and Prevention, Arthritis Program, which is important because it's one of the most important chronic diseases of our time. And the fact that now public health organizations can think of it as also an important chronic disease to try to prevent and to control, which I think is really important. 

And then I think what we're starting to do is to pivot to return to strengthening our science, of where we decide to invest our research efforts. At the beginning of my volunteerism for the Arthritis Foundation, there were very few other private organizations that would fund arthritis-related research. And now, as a result of organizations like the Rheumatology Research Fund that is developed by the American College of Rheumatology, that's not the case. NIH has grown. The Arthritis Institute has grown at the NIH. So, there are opportunities not just for research funding, but also for research training that the Foundation was really critical in initiating and maintaining back in the '60s, '70s and '80s. 
 
As a result of our uptick in fundraising, we do have an opportunity to still help fill in some of the gaps, to try to promote rheumatology and arthritis-related research. And I think the area of osteoarthritis is really a key, important area that's still somewhat neglected. I think our pivot back to becoming interested in certain aspects of lupus and rheumatoid arthritis and psoriatic arthritis will also be very, very useful going forward. 

Steve Taylor:
I'm excited. Especially in our 75th year, we've increased our research budget to now $12.2 million, the first time it's been over $12 million. And our commitment to research will continue to advance over time. And you hit it so well in regards to purposefully picking where we want to make the impact, that other organizations or companies are not looking at, where we know we need to look at because that's what we stand for: making sure we represent all people with arthritis. 

Well, I can't thank you enough. I'm joined today by Dr. Rowland (Bing) Chang from Chicago, who's been an amazing supporter of the Arthritis Foundation, as a leader not only in Chicago, but nationwide for us. 

This is part two of our special podcast series honoring the Arthritis Foundation's hallmark anniversary. And in part three, you'll see how far we've come in supporting children with arthritis and their families who are challenged by juvenile arthritis and related childhood rheumatic diseases. 

Truly, it's been an honor for you to be with us today, Dr. Chang. 

Rowland W. (Bing) Chang, MD, MPH: 
It's been my pleasure, Steve. 

Steve Taylor:
Thank you so much. 

Rowland W. (Bing) Chang, MD, MPH: 
You're welcome. 
 
PODCAST CLOSE:      
The Live Yes! With Arthritis podcast is independently produced by the Arthritis Foundation. This podcast aims to help people living with arthritis and chronic pain live their best life. People like you. For a transcript and show notes, go to https://www.arthritis.org/liveyes/podcast. Subscribe and rate us wherever you get your podcasts. And stay in touch!