of arthritis, according to the CDC.

With over 100 different types that can affect the joints and connective tissues, arthritis is painful and debilitating.

On this episode, we'll speak with doctors and medical experts about this condition as well as look at available resources on both a national and global level.

Welcome to A Su Salud, Cheers to Good Health.

I'm your host, Genesis Ortega.

We're broadcasting from inside the PPL Public Media Center in Bethlehem, Pennsylvania.

My first guest is St. Luke's University Health Network expert Dr. Patrick Brogle, an orthopedic surgeon.

Thank you, Dr. Brogle, for joining us today.

- Thank you for having me.

Thanks, PBS.

- Let's get started and jump right in with our first question.

Can you tell us what arthritis is?

- What it boils down to is arthritis is a condition that evolves when people lose the cushion separating the bony edges at their joint.

And it's a very common condition, really.

About 30 million Americans, which means about one in ten Americans, have the condition and require treatment for it.

- Now, when we talk about diagnosing it, what are some of the symptoms that come up with arthritis?

- No matter what form of arthritis patients have, one of their more common presenting symptoms is pain at the level of the joint that's involved.

So if you have knee arthritis, you commonly have weight bearing pain in the knee.

If you have hip arthritis it's common you have pain in the groin.

If you have arthritis in the ankle, commonly it's pain at the level of the ankle joint.

So no matter what joint's involved, the typical symptom is onset of pain at the level of that joint.

- Now, is there anything that you can do to prevent arthritis?

What are some of the causes?

How does this come up?

- You can get better parents.

There's a very strong predilection in families.

So some of this is DNA driven, and some people just have DNA that codes for the cartilage cap of the bone that is not particularly resilient.

And that is very often the reason why we will see clusters of real bad, real significant arthritis in some families.

- Now, when it comes to treatment, how do you treat it?

- I mean, there's a gigantic treatment algorithm as far as what we do for patients with arthritis.

And a lot of it is learning how to deal with the condition that your body has.

Most of our symptoms are based on managing the symptoms of arthritis.

Commonly we'll instruct people about healthy lifestyles, weight loss, physical therapy measures to promote restoration of joint motion as well as strength of the muscles across that joint.

Those are oftentimes the cornerstones of treatment for arthritis.

We also introduced medications.

Sometimes systemic anti-inflammatorous medications can be very helpful to reduce acute painful flare-ups of arthritis.

Very regularly, we will inject sore, aching joints in the office with a cortisone component.

There's other medications that we can inject.

We can inject lubricant-type materials.

And really, when all other measures fail, arthritis is treated surgically with joint replacements.

- What makes someone eligible for an injection or a surgery?

- I think as a physician, you'd like to see someone who has had an ample amount of non-surgical treatment.

Right?

We want to exhaust our nonaggressive treatments prior to embarking on an aggressive surgery, so someone who's had plenty of treatments in the form of activity modifications, medications, injections and so forth.

And we'll never operate on an asymptomatic arthritic condition.

There's many people that I take care of that have arthritis, and they describe very little, if any, functional impairment.

So those are great candidates for observation and non-surgical means.

It's when the arthritis begins to define that person by preventing them from participating in the activities that they want to do or need to do, that's where we begin to think more seriously about, well, should we consider a joint replacement for this patient to improve the quality of their life?

- Now, are doctors only able to manage symptoms and manage pain, or is there an actual cure for arthritis?

- There is no well-established cure for the traditional osteoarthritis.

There are a bunch of evolving treatments for the inflammatory and the autoimmune type arthritities, such as rheumatoid and psoriatic arthritis.

And you can't watch a program on cable TV, if anyone watches cable TV anymore, without seeing some of these commercial medications like Enbrel.

All right?

These are disease modifying agents that really lessen the impact that the autoimmune and the inflammatory arthropathies have on people's overall health.

- Now, when men and women are concerned, when we're talking about gender, is there a certain gender that's more susceptible to arthritis?

- I think there's a general predilection towards women being more prone to being diagnosed with some of the inflammatory arthropathies.

It may be due to some overuse.

Perhaps men are more vulnerable to developing traditional primary osteoarthritis or quite possibly post traumatic arthritis.

- Is there anything that can be done to help prevent it?

Are there any exercises that people can do?

- I think healthy lifestyles is the cornerstone of good general health.

I think walking regularly for activity, for exertion is good not only for your cardiovascular system, but I think it's a good way to promote and maintain healthy joints.

- Now, Doctor, when we think about arthritis, we automatically think about older Americans that suffer from this disease.

But what about children?

Can children also get arthritis?

- Yeah, I mean, there are increasing numbers of people and children diagnosed with arthritis.

And I think the numbers that have turned around, about one in 300,000 American kids will develop some of the juvenile arthritis, like juvenile rheumatoid arthritis.

The American public is more aware of what symptoms are emanating from what disease condition.

I think there's a wealth of information available nowadays on the internet that actually clue people into perhaps the reasons why one of their children may be limping.

- Now, Doctor, when you talk to your patients, what is the one piece of advice that you find yourself repeating over and over to patients?

- The sum of it has to do with the healthy lifestyles.

We really encourage people to be as active as they can.

I encourage my patients to max out their nonsurgical management before they begin to embark on surgery, because surgery done for the right patient, surgery done for the right reason, typically yield the right result.

We want to make sure that the person knows what they're getting themselves into.

- Great.

Thank you so much, Dr. Brogle, for being with us today.

I appreciate your time.

- Thank you, guys.

My pleasure.

- My next guest is Dr. Daniel Hernandez, director of medical affairs and Hispanic outreach for the Global Healthy Living Foundation.

He joins us today to talk about CreakyJoints, a digital community for millions of arthritis patients and caregivers.

Thanks for joining us today, Doctor.

- Thank you for having me, Genesis.

- Let's jump right in.

What exactly is the CreakyJoints organization and what does it do?

- Sure.

So, CreakyJoints and CreakyJoints Espanol is a nonprofit online community for millions of arthritis patients and the people who care about them.

What we do is we provide all of our education support and research opportunities where they're at.

So, for example, in the Spanish community, we focus more on providing this information through WhatsApp, which is widely used by our Hispanic population.

At CreakyJoints, the English version, we focus on Twitter and those social media platforms as well as our online platform.

- That kind of leads me into my next question.

As director for Hispanic outreach, what's your role in targeting the Latino community?

- Definitely, So, historically, as we all know, it's hard for Spanish speaking communities to find comprehensive health information and education in Spanish, in their preferred language.

And what we do is we try to help them understand their own experience with conditions such as rheumatoid arthritis or another inflammatory disease and also help them explain it to family and friends.

The reason why we focus on this, especially the family and friends part, is because, as we know, the network that these types of patients, who are chronic illness patients, have, that the strength of that network dictates how successful they're going to be managing their disease.

Therefore, if they have a strong network, if they're able to explain exactly what their condition is, what this entails, what type of support they need to these family and friends, they're able to successfully manage such a difficult thing.

I mean, we all experience difficulties managing health care.

Another level is added of difficulty when you have to manage it in a language that you're usually not accustomed or simply managing a chronic disease.

There's so many nuances to managing this type of condition.

So that's what we try to do.

- And I agree with you 100%, communication is key, especially when there is a language barrier that exists with Spanish speaking patients.

Now, there is something really exciting that your organization did.

They launched a new app for Spanish speaking patients and caregivers.

Can you tell us more about that?

- Sure.

So we just launched ArthritisPower Espanol.

ArthritisPower, the actual application, has been available for our English speaking community for about five years, five years now, but we are very, very excited to be able to provide this to our Spanish speaking community.

This is a patient centered research registry.

The Spanish version is entirely available in Spanish for people living with joint, bone and inflammatory skin conditions such as arthritis.

In ArthritisPower Espanol, what patients can do is that they can select from dozens of symptoms to track.

These can be ranging from pain, fatigue, physical function and many more.

And what they do is that they share that data directly with their doctor.

And also they're able to track these types of symptoms throughout a specific time period.

So this is very important, because many patients go to their rheumatologist about every three to six months.

So in between seeing their doctor, there's many things that can happen.

Right?

And it's very difficult to track these types of variations in intensities of a specific symptom.

Therefore, this app, ArthritisPower, saves all that data.

And along with the notes that these patients take and that they can also take in this app, it can improve the communication between the doctors and the patients during the visit.

- Technology is a great thing, I'll tell you.

I mean, for a tracker to kind of be the liaison between a patient and their doctor in tracking symptoms, I mean, I think that's revolutionary.

Are you guys expecting good things coming out of this?

- We definitely are.

We're extremely motivated in trying to make it as readily available for our Hispanic population, especially because, as we all know, the disparity in research and in specifically for the Hispanic population is at an all time high.

Therefore, these types of applications that are easy to use and that provide a value for the patient but also for researchers and for physicians, we're very, very excited about because we not only give power to the patient in tracking their symptoms, but we're also kind of doing a warm handoff to the opportunity to participate in research, which usually they, especially our Hispanic population, aren't...

It's not readily accessible for them right now.

- Now, this is an app that anyone can download on their phone through the App Store.

- Yes, definitely.

You can look for it at ArthritisPower or you can go to our website, ArthritisPower.org.

And the Spanish version is simply ArthritisPower.org.es.

- Great.

What other resources are available to patients and caregivers and families?

- Sure.

So, we have, as I mentioned, CreakyJoints Espanol.

We also have CreakyJoints.

You can find both of them at CreakyJoints.org.

What that is, as I have previously mentioned, it's an online community, will provide very health literate information for our chronic disease patients, our community of chronic disease patients.

What we also have is the 50 State Network, which is a group of patients that are very interested in advocating for specific health related policies that are currently in either a state or local or even federal process.

So what we do is we give the tools and we give the education to these patients to be able to advocate for themselves.

And you can find that at 50StateNetwork.org.

- Tell us more about the Congressional Arthritis Caucus.

- Sure.

So, the Congressional Arthritis Caucus is a great caucus, it's filled with state representatives from all throughout the United States that are interested in advocating for what's important for patients that have a chronic disease, such as arthritis.

We work closely with them in order to educate our patients on what currently is in legislation and what currently is trying to be passed.

And we try to see how our very active community can be a part of this.

- Now, with an incredible digital presence, the work that you're doing from a legislative perspective, can you share with us really how all of this came to be?

What's the history of the CreakyJoints organization?

- Sure, that's a very good question.

So, actually, it's been more than 20 years that CreakyJoints and Global Healthy Living Foundation, which is the umbrella nonprofit that CreakyJoints and the other properties that I've just spoken about live under.

This was started by our co-founders, Lou Tharp and Seth Ginsberg.

And Seth was actually in college.

He was a young arthritis patient who didn't have that community anywhere.

So, he was actually interning with Lou and they started speaking about this, the possibility of them creating this sense of community.

And from there it started, and it's grown.

And I feel very, very lucky to be a part of this organization where we truly care about the patient and we focus on trying to give them the tools to empower them to be as an effective patient as possible.

- And helping with the communication perspective, too, from a Spanish speaking audience perspective and patients' perspective, is also key to that.

Is there anything else that you would like for people to know when talking about this topic?

- I'd love to invite everyone to visit us at CreakyJoints Espanol, CreakyJoints, download ArthritisPower and check it out for themselves.

Thank you so much, Genesis, for having us on and for giving me the platform to educate your community about the important things that we're doing for our community.

- Thank you, Dr. Hernandez.

And hopefully we can bring you back on in a year and talk about how that app is doing.

- I would love to be on it.

- Thanks again.

Take care.

- Thank you.

Bye-bye.

- My next guest is Holly Maddams, an executive director from the Arthritis Foundation.

Thank you, Holly, for being with us today.

- Oh, thank you so much for having me.

- Let's jump right in here.

What would you say the Arthritis Foundation mission is?

- Well, truly, we're trying to cure arthritis.

Now, that being said, arthritis is...

The umbrella term arthritis covers more than 100 diseases of the bone and joint.

So some of us would argue we might need 100 different cures for each different form of arthritis.

But, you know, on the day to day right now, we're getting closer to a cure.

We're serving people living with arthritis by providing educational programs, resources they need.

We're funding critical research into the causes of the many forms of arthritis, developing better treatments that will lead to the cure.

And of course, we're doing a lot of advocacy to ensure that patients have access to the quality care they need and that it's affordable for them.

- Let's talk about resources for a moment.

What types of resources are available to patients through the Arthritis Foundation?

- Well, like most organizations, we have a really fantastic website.

It's arthritis.org, and on there, people can essentially join the community of others living with arthritis.

They can join a connect group.

All of those are still happening virtually right now.

They can also participate in educational programs, podcasts, just all kinds of fun things, as well as attend ask-an-expert sessions, where doctors and other health care providers are available to just provide answers to questions, whether it be how to handle their arthritis while living through a global pandemic to gee, where do I find a good doctor or what do you know about this alternative therapy?

Really soup to nuts.

And right now we are in the process of launching a brand new app called Vim, which is here to help people with arthritis manage the pain they live with on a daily basis.

We recently completed two years of a patient-reported outcome survey that showed that 100% of the people living with arthritis who completed it documented that they live with pain at a level five or higher on a daily basis.

And 90% of those reported that pain interfered with the activities of daily living, from work to maintaining their home, just to really provide some significant interference to their lives.

So that's something the Vim app is helping people to manage better and hopefully just have a better quality of life.

- Now you have a main fundraiser, the Walk to Cure Arthritis.

Why is that considered the flagship of your fundraisers?

- Well, we find that when people are first diagnosed, they want to get involved.

And many of them, including the families of children living with juvenile arthritis, want to find a way to make some real progress towards finding a cure.

So, the Walk to Cure Arthritis is our most accessible event.

There's no registration fee to sign up for it.

You can come out and walk in a year when we're not virtual.

This year we have some virtual events, some in-person events.

But you can come out and get to know people, and you're still able to do that in the virtual environment.

Of course, you're going to walk on your own with your family, friends or whomever you want, be able to track your steps on the Walk to Cure Arthritis app and report those in.

But more importantly, we're hoping that people are telling their story of living with arthritis, sharing it with their friends and helping us spread the word that we as an organization are here to provide support.

One in four adult Americans live with a doctor-diagnosed form of arthritis, and we estimate the number is actually much higher because many people don't go get a diagnosis for some of those aches and pains they experience as life goes on.

- Are there any other sponsored events during the year that your organization holds?

- Yeah, in addition to the Walk to Cure Arthritis, we host something called the Jingle Bell run, which is a holiday themed festive 5K.

We've been doing it for over 35 years now.

And as the title would say, it's a five K run.

It also has a walker aspect.

We do a series of educational programs, too, throughout the year.

We've got a number of Live Yes!

with RA programs coming up.

The national launch will take place on July eighth at 7:00 p.m. Eastern Time, seven to eight 30.

We'll have some experts talking about what it's like to live with rheumatoid arthritis, which is an autoimmune form of arthritis, and answering questions after they get through the official presentation.

So, again, we do a lot of educational programs year round.

They're all still happening online and on Zoom presently and probably will be into July and through some of August.

But once we got into the fall, many of us will be returning to in-person educational programs that also include the opportunity for people to join remotely if they're either not comfortable coming out in person or if it's just too far to drive.

Again, I mentioned that sort of burden of pain that people with arthritis live with every day, and for some of them, just spending the energy to take a significant car ride and participate in an educational program and then take the car ride home is just too much energy spent on that activity when they also have to work and care for children or other loved ones and the rest of the activities of daily living.

So we think that the virtual world will always be a part of who we are, going forward.

People with autoimmune forms of arthritis are on medications that compromise their immune system.

So the global pandemic was a real threat to their health.

- Now, are any of these issues being tackled from an advocacy perspective?

I know you have the advocates of the Arthritis Foundation.

Are they involved in that?

- They are involved in that and in a number of things.

A couple key issues for people living with arthritis is something called step therapy or fail first legislation policies with insurance companies.

And essentially what it means is, so, your doctor, your rheumatologist who's been providing your care and is also an expert in providing rheumatologic care, say they want you on a certain medication and that's what they prescribe.

They know it's going to have probably the best outcome for you.

But your insurance company says, well, no, we actually want you to take this other medication first.

So you have to take that medication for approximately six to nine months.

When it doesn't work for you, your doctor then wants to put you on the original drug.

But possibly your insurance company might say, well, no, now we want you to try drug B, and so on.

So you have to fail a number of medications before you get to the drug your doctor wanted you on and thought would have the best result for you.

And because arthritis is a cumulative disease, the damage to the bone and joints is irreversible presently, because you had to spend all of that time on the wrong medication, that damage has gotten worse, your health has gotten worse.

And it's just a cumbersome process and something we don't want our patients to have to endure.

We want our doctors to be able to prescribe what makes the most sense.

And we want a very streamlined appeals process.

That's another piece of legislation, as an organization, we have been working on.

Streamlining that appeals process and having the reviews happen in a more timely manner is critical to patients, too, so when their doctor says, well, actually, I don't want them on drug A or B, I want them on this other drug that I prescribed initially, having that happen in a quick and timely manner and be reviewed by a doctor with the right training to make the right decision for patients is something we're advocating strongly for as well.

- And that's critical, Holly.

You know, it's clear that you offer support for arthritis patients, but when it comes to family members and caregivers, are there any resources for them?

- Certainly all of our educational programs are open to loved ones and family members.

We want them to participate because it helps them learn a little bit more about what their loved one's dealing with as well as helps them be informed about resources and treatments so they can advocate for the care that their loved one needs.

In addition, as I mentioned, there are children living with arthritis, and it's not the arthritis most people think of when they think of arthritis.

It's not osteo that happens from wear and tear to the joints.

It's a rheumatologic form of arthritis, so it's an autoimmune disease.

It's diagnosed in children as young as infancy and it's very aggressive.

And also there is no cure for the rheumatologic forms of arthritis or any form of arthritis, but it can cause damage to all kinds of systems in the body.

And as I mentioned, that damage is irreversible once it sets in.

So we really work a lot with our juvenile arthritis or JA families, as we call them, to make sure that the parents have the tools and resources they need to advocate for their children in the health care system and the educational system, because, of course, children, with JA tend to have higher rates of absenteeism as they're managing those pain levels and other issues that come along with living with a chronic illness.

- We have about a minute left, Holly, but are there any final thoughts you want to share with our audience?

- Well, you know, the Arthritis Foundation is here.

As I said, you know, one in four people have arthritis, the number one cause of disability in the United States.

And we want to help people with arthritis to live their best lives.

So if you have arthritis or you know someone who lives with arthritis, please tell them about arthritis.org.

Feel free to go on the App Store, whether you're Android or Apple, and look for the new Vim app.

And if you have arthritis or someone you know does, we'd love them to complete the Insights survey that I mentioned earlier.

That data has really been critical in our ability to provide the types of programs and resources that people need as well as to fund the types of research that's going to help make a difference in their lives.

- And just to double back on the app, it's great that technology like this exists, because really you can help anyone from a global perspective.

- We certainly can.

We think that way.

I'm glad you think that way, too!

Again, arthritis.org is sort of your one stop shop for everything our organization can provide and do.

- Wonderful.

Thank you so much, Holly, for your insight and for speaking with us today.

- Oh, thank you so much for inviting us.

I want to thank our St. Luke's University Health Network expert, Dr. Patrick Brogle, and Dr. Daniel Hernandez and Holly Maddams for joining us today.

And thank you for tuning in.

We look forward to seeing you again soon.

If there is a medical subject you'd like for us to cover, send me a message on social media.

You can find me on Facebook and Instagram.

Plus, you can tune in to hear more of my reporting on 91.3 FM, WLVR News, your local NPR News source all day every day.

I'm Genesis Ortega, and from all of us here at Lehigh Valley Public Media, stay safe, be healthy, and cheers to your health.