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Debbe McCall: Cardiovascular Patient Researcher, Advocate & Speaker

Published September 30, 2020

Show Notes

Debbe McCall is a cardiovascular patient researcher, advocate, and speaker. She was also a participant and expert speaker in the Alliance for Aging Research’s Talk NERDY to Me program. In this episode, Debbe talks about how she became a patient advocate and how patients can best advocate for themselves.

Follow Debbe on Twitter: @DebbeMcCall

Learn more about the Alliance for Aging Research: https://www.agingresearch.org/

Episode Transcript

Sue Peschin:

Hello, and welcome to This is Growing Old, a podcast from the Alliance for Aging Research. I’m Sue Peschin, President and CEO of the Alliance for Aging Research. On this episode, I’ll be talking to Debbe McCall, a cardiovascular patient, researcher, advocate and speaker. She is also a previous participant and speaker in the Alliance for Aging Research’s Talk NERDY To Me program. We’ll be talking about Debbe’s experience as a coronavirus case investigator, which I can’t wait to hear about, her patient advocacy journey and more. Debbe, thank you so much for joining us on This is Growing Old.

Debbe McCall:

Thanks for asking, Sue. It’s nice to chat with you again.

Sue Peschin:

You too. All right. Well, first of all, how have you been coping during the COVID-19 pandemic?

Debbe McCall:

Okay, we’ve got 60 minutes for this one answer, correct?

Sue Peschin:

Go for it.

Debbe McCall:

In fairness, this is actually a twofold question. My atrial fibrillation support group on Facebook is a very large international group. Our administration team started getting, “How does this affect me?” what if questions in early January, a little bit earlier than everyone else. We had to make some very quick admin-type decisions, and one of them we made was to dedicate a COVID-19 thread in the group. And we would curate and translate and link specific science articles directly about AFib.

Debbe McCall:

We still have a dedicated thread. Currently, it’s, “What are the numbers? What are the latest treatments? How to have a telehealth visit with your doctor? Yes, you should go to the ER and here’s what they’re going to do to protect you from other COVID patients.” It was a lot of also emotional coping with everybody’s normal having been changed. It’s not just you’ve been diagnosed with a chronic disease, now, you’re in the middle of a pandemic.

Debbe McCall:

And one of the things I did find interesting among the membership was many of them said, “Okay, now you understand how our lives have been turned upside down by a diagnosis.”

Sue Peschin:

Exactly.

Debbe McCall:

Because this has affected everyone.

Debbe McCall:

Now, personally, the change was abrupt. I was completely focused on what I do in advocacy and research and attending meetings, and that came to a screeching halt in March. I mean, it just stopped. You saw all those national conferences canceled. I typically do 300 hours of conferences a year.

Sue Peschin:

Wow.

Debbe McCall:

That’s [crosstalk 00:02:45] miles I fly because it’s important for me to get the information in real time from the researchers who did it and it gives me a chance to network with our specialist and our researchers. Research funds that were pending approval for cardiovascular or something else were quickly shunted over to COVID research. So that income stream for me was gone. And that’s when I applied to be a coronavirus case investigator for my county.

Sue Peschin:

Tell us what it was like to transition from what you were doing before to becoming a coronavirus case investigator. And what is a coronavirus case investigator?

Debbe McCall:

I’m really glad you’re asking because that’s something that needs to be clarified and it is kind of confusing. For me, making this transition is nothing new. When you get to this stage in your life, you’ve made these sudden adjustments because of outside forces. I’ve changed careers quite often, moved often, nothing new. You just go with it.

Debbe McCall:

Back to the coronavirus case investigator versus contact tracing, which most people are more familiar with that word contact tracing-

Sue Peschin:

Right.

Debbe McCall:

And the simplest way to explain it is when you get a positive test for the coronavirus, a case investigator is usually a nurse or some other licensed person who calls and talks to you, basically, “How are you feeling? What are your symptoms? How is the rest of the household doing? Is anyone else sick? Has anyone else tested positive?” The case investigation portion of a pandemic work is actually how we learned that the loss of taste and smell were some of the earliest symptoms for the coronavirus-

Sue Peschin:

Interesting.

Debbe McCall:

Because we kept hearing it over and over again, but that was from the case investigators talking to folks in their county who’d tested positive.

Debbe McCall:

Now, the contact tracer picks up from, “Well, I had symptoms at work for a couple of days before I stopped going to work. I went to a family event. I went to a holiday event. I went traveling.” That’s where the contact tracer picks up. Where did you go? Who did you meet with? And we follow up to make sure, for instance, that businesses are following the guidelines for safety for their employees. We’re tracking to see where else this virus has gone within and with out of the county.

Debbe McCall:

So the simple way to think of it is the case investigator works inside the house, the contact tracer works outside of the house.

Sue Peschin:

That’s a great way to explain it. And I think it’s a really good thing for our listeners because I’m sure people are sort of wondering, “Why am I being contacted by different people when I already talked to somebody?” So understanding the context of that I think is really important.

Sue Peschin:

There’s been a lot of press coverage about cardiovascular effects from COVID-19 and I’m sure this has the AFib community talking a lot. And I’m just sort of wondering what, within the community, what is the reaction to that? And do you think that we’re going to see an uptick in people that experience atrial fibrillation as a result of the pandemic?

Debbe McCall:

Oh, that is such a great question, and there’s some history in that. Back in the spring when Italy was the focus, there was some early report that atrial fibrillation was a risk factor for COVID complication. It was widely reported in the media that this was like a 25% risk, but when you digged down, and I really had to go back and find the original Italian public health report in Italian, get someone to translate it for me, and then I took it to two of my Italian specialists and asked them what they thought about it because I felt that there were big missing chunks of data in that report.

Debbe McCall:

They came back and said, “This report does not say AFib leads to coronavirus complications. It’s the other way around, coronavirus looks like it may lead to heart changes and increasing your risk of AFib down the line.” This is my small plug to say always look at the original source. No matter what you read or see in the news, find out what the original source was and look at that. It’s very easy to get those numbers confused or get the final meaning confused.

Debbe McCall:

Now, that said, we do know, and I just read a report two days ago, that the coronavirus loves a protein that is specific to the heart. So if you think of that little virus, it looks at the heart like a giant Snickers bar and it goes right after it. And unfortunately, that is causing changes, myopathies in the heart, and one of the three main myopathies that the coronavirus is causing is more arrhythmia.

Debbe McCall:

Now, we haven’t seen a huge uptick in newly diagnosed folks into our forum yet, but I would expect, based on what’s projected and what we’ve seen in Italy and Spain, that by next year, we will.

Debbe McCall:

One side note that’s rather interesting. My group has 16,000 members. I’ve been keeping very close track of the people who say they’ve actually tested positive for COVID-19. We have four. So that means folks were very, very, very good about distancing, washing their hands, wearing a mask, avoiding large groups, avoiding other people when they were sick. And the ones that did get sick, they did fairly well. They quarantined right away. They did everything they were supposed to based on the CDC guidelines. And I think it made a certain amount of their recovery a little bit easier.

Sue Peschin:

Oh, that’s so great to hear. It’s really interesting because 16,000, that’s a lot of people. That’s a published study. I mean, I know this is just observational and it’s not an actual study, but it’s really interesting when you think about it and it sort of speaks to how people that have chronic conditions had to be extra careful when this came along, and to kind of learn from the way that they responded.

Sue Peschin:

I think there’s going to be a need for education around the symptoms of atrial fibrillation, just so folks who have gone through this will understand better what they might be experiencing and making sure that they get attention if it’s needed. So that’s all really, really helpful. Thank you, Debbe.

Sue Peschin:

So I’m going to pivot and talk about the Alliance’s Talk NERDY To Me training, which you attended, first as a participant and then as an expert speaker, although I would argue you attended as an expert from the get-go. Will you please tell our listeners a little bit about what you learned from the training and how it’s helped you as a patient advocate?

Debbe McCall:

I especially enjoyed the Talk NERDY format. It’s small. Quite often, trainings for patients or for advocacy are large groups and you’re not able to make a connection, many first-timers are intimidated to ask a question. And the one thing that I’ve always appreciated about how Talk NERDY is handled is that it’s small and it’s personal. So we have time to really hear the other advocates, their carers, what are they going through and how do they get to the next step?

Debbe McCall:

The most common misconception I think about advocacy is that you’ve got to be a big name or run an organization or have a science background. Well, you don’t. What you really need is a desire to help other people and help them navigate a system that isn’t natural for most of us. I mean, when you take a trip, you plan it. Where am I going to go? How am I going to get there? Where am I going to do my stuff? What am I going to wear? When you walk into a doctor’s office, when you walk into a hospital, you don’t have any of that assistance.

Debbe McCall:

So those who have gone before you, yes, I know that’s very Star Trek, but those who have gone before have some really helpful ideas on, “If you phrase it this way,” or, “This is what you’re looking for.” And sometimes it’s big, broad things that advocates can help each other with, like, “This is how science works. This is how a study is run,” and sometimes advocates can be helpful in, “Oh, this parking lot is so much easier and always has spots.”

Debbe McCall:

So the biggest thing is you want to help someone not have to make the mistakes you did. My personal favorite is that I’m always happy to talk about the pathways for drugs and devices through the FDA system. It’s a long process. Most people don’t understand it. They’re sort of getting a crash course this year though because they are seeing the scientific method and the FDA trial method in compressed real-time because of the coronavirus.

Sue Peschin:

Right. That’s right. Very true with the vaccines and with some of the treatments. So tell our listeners how you became a patient advocate for AFib.

Debbe McCall:

I didn’t mean to. It wasn’t my big plan.

Sue Peschin:

Okay.

Debbe McCall:

It took me a year to get diagnosed with AFib because it was paroxysmal, meaning I was in and out of it on my own. I wasn’t necessarily wearing an EKG or a monitor at the time I had AFib And that is the only way it is diagnosed, it’s with an EKG or an ECG when it happened.

Debbe McCall:

So once I was finally diagnosed after a year, the first thing I did is I went online and I read the science and I looked at the guidelines and I learned what my treatment options were. And then the second thing I did is I went online and I looked for support groups, and I signed up with every single support group I could find for AFib, all of them. It was important to me to see what other people were going through. There’s no one in my family, no one in my small world that has AFib. So I didn’t have anyone else to talk to about it.

Debbe McCall:

The Facebook group that I now admin was the first one on Facebook, and it had just been created by Dave Burger a few months before. He was another AFib patient looking for something on Facebook. And there wasn’t anything, so he started it. And as I learned new science along the way and what I thought was helpful for me, I would curate it, put the link in, and then put it into each of the groups. And Dave was always very supportive of, “Oh, that’s very helpful. Oh, that’s a good idea,” and he was always very welcoming of having the science brought in and explained.

Debbe McCall:

Through all those other groups, I ran into and heard about and interacted with Melanie Truehill from stopafib.org. She’s also spoken at Talk NERDY To Me. She’s our leading advocate for AFib in the world.

Sue Peschin:

Yes.

Debbe McCall:

And I always liked to joke and say it’s all Melanie’s fault, but I had appreciated her website because it was clear. It was accurate. It was always current. She spoke in our language.

Sue Peschin:

Yes.

Debbe McCall:

And once, she mentioned that she was coming back for multiple trips overseas for conferences and that she had all these things to do. Well, I’d been administrative support for decades, I’d been in HR for a long time, and I just said, “I have these skills. Can I be helpful?” And I honestly thought she was like, “Well, I need help writing this,” or something else. Instead, she nominated me to be a patient representative to the FDA, and the very first advisory committee I sat on was one of our brand new blood thinners.

Sue Peschin:

Right.

Debbe McCall:

[crosstalk 00:15:26]. And it really just snowballed from there. Every time Melanie would go, “Debbe, what do you think about that?” “Oh, I think I could do this if we did it this way.” She goes, “Okay, I’m going to put your name in for it.”

Debbe McCall:

So that’s really how it came up is, “Oh, I can learn to do that. Oh, I think I know how to do that. Well, I want to learn how to do that.” And that’s how I ended up taking that designing clinical research class at the University of California San Francisco as the first patient in a room full of doctoral students.

Sue Peschin:

Wow.

Debbe McCall:

Because I said, “I [inaudible 00:16:01] want to learn how you design these studies.” And they said, “Well, okay, we’ll sponsor you to go. If you think you can do it.” And I did.

Sue Peschin:

Good for you. That’s awesome. I mean, this stuff is not rocket science. I mean, you have to be willing and understand that there’s going to be tough words, but I think that is a great lesson for a lot of folks who are listening, which is just, your experience is unique. And even though researchers know a lot of big words and maybe processes that you have to learn as you go along, the experience of coming from it from a personal perspective, that is unique to them.

Debbe McCall:

Thank you. I agree with that. And when I’m in groups of researchers and they get to the words, and I’ve learned more and more as time goes on, but early on, I didn’t, I would say, “Stop, wait a minute. Can you translate that for me?” And they [inaudible 00:17:00]. And I said, “Well, I’m not a researcher. I’m a patient. Explain it to me so that I can understand. This is an important conversation.”

Sue Peschin:

Right.

Debbe McCall:

And they’d have to think about it and rephrase it. And I’d go, “Oh, okay.” I said, “So the next time one of your patients asks you about this, you already know how to answer them.” So I turned it back so it would be a positive for them in the future.

Sue Peschin:

That’s right.

Debbe McCall:

So I learned [inaudible 00:17:26] here they can help the next patient that comes along and wants to understand.

Sue Peschin:

So going in the other direction, what are your tips for how patients can best advocate for themselves?

Debbe McCall:

I think it’s three steps. First, you really need to learn the basics of your disease as much as you’re willing to, the causes, the risk factors, testing, treatment options. If you’re willing and want to, I would really suggest you consider reading clinical guidelines. Every disease has a specialty. Mine is electrophysiology, and you can go on to clinical websites. Everybody has a board, everybody has a society, and read those guidelines for atrial fibrillation.

Debbe McCall:

And it’s basically, it’s an organizational chart. “If you have these symptoms, if you have X, then we recommend you do this.” This way, when you walk into an office visit, you already kind of know what words you’re going to be hearing and you already have some understanding of what they might recommend for you. It helps you understand how the clinician is making those decisions.

Debbe McCall:

Second, always, always, always prepare and organize for every single visit. Treat it as a business meeting. Treat it as an interview. So write down all your questions. Most of us have like a hundred, but pick the three that you really need to talk about today. And practice those questions. “I have this symptom and it’s worrying to me because it happens this often and this is how I feel when it happens and I’m scared. What should we do about this?” Because you need shorter, concise questions so that they can help you a little bit more efficiently. So practice. I mean, what else do you have kids and pets for? Practice.

Sue Peschin:

I like it.

Debbe McCall:

And then the third thing is if you, this goes back to what I said earlier, if you don’t understand, keep asking until you do. One of my previous bosses always admitted that accounting was not his thing. And I said, “But you’re so good in those meetings.” He goes, “I keep asking them until I understand it, until it makes sense.” I went, “Oh,” and that’s true with clinicians. If you don’t understand what your doctor or your nurse practitioner or your physician assistant is telling you, say so, “I really don’t understand what you’re trying to tell me. Can you phrase it another way,” or another way to do it is, “Do you mean A or do you mean B?” It helps them learn how to talk to us. They’re not taught that, and it helps us learn their words as well. So it’s sort of like a bilingual exchange.

Debbe McCall:

And then finally, take your notes. Take notes, take notes, take notes. Doctors take notes in medical records, right? So should you. If that’s going back into your calendar and saying, “This is what we talked about on this visit,” if it’s paper notes, if it’s a computer note, write it down. Those three things, learn your basics, organize your visit, and write it down, make your notes.

Sue Peschin:

Really good advice. Okay, so as one of the moderators for the atrial fibrillation support forum on Facebook, you see firsthand what patients are going through. Why do you believe an online support group like this is so important?

Debbe McCall:

Patient support groups are for patients and no one understand is better. What we grow through than we do. Whether you’re the patient, whether you’re the carer, whether you’re a family member, whether you’re a friend, no one understands it like we do. We live with our disease 24/7. Most of us learn how to translate medical into patient over time, but when you’re newly diagnosed, you’re scared and you have a million questions and it’s hard to organize them. And it’s hard to ask them in an office visit because you’re not even sure which questions to ask.

Debbe McCall:

That’s where online support can help. We have documents. We have members that can walk you through it. “Here’s how you prepare. Here’s what you really need to ask. This can kind of wait,” or they go into a visit and it’s like, “I’ve been ordered all these tests. What are these tests for?” And a clinician will quite often say, “Well, we just need to see how your heart’s doing,” and move on, but we want a little bit more information. And you go say to Google and you look at the test, but it really doesn’t say how does this test apply to AFib. We can answer that question for you. We don’t interpret results, we don’t even allow them to be posted, but we can at least tell you, “When they do this test, this is what they’re looking for and how it relates to your AFib diagnosis.”

Debbe McCall:

The upside of online support groups, 24/7, 365. Show up in your yoga pants and your fuzzy bunny slippers and we’ll answer your question for you. You don’t have to dress up, you don’t have to go anywhere, you can all do it from home. And even in the middle of the night, you can wake up and go, “I just thought of this and it’s kind of scary. Has anybody else gone through this?” There’s always going to be somebody online going, “Yeah, me too. I felt like this and this is what happened for me.”

Debbe McCall:

Usually it’s calming, it’s helpful because you know you’re not alone. Now, while they say there’s 6 million people in the US with AFib and almost 40 million globally, unless it runs in your family, most of us don’t know anybody else with AFib. And not only is there a lot of information that is constantly changing with AFib, add a pandemic, add that you don’t have anyone else in your family that has it, and that my group runs much younger, there’s a huge emotional impact for AFib that is often missed in the doctor’s office.

Sue Peschin:

All right. Well, that actually is a good segue to my next question, which is, what do you think is the one area most patients struggle with that’s missed by clinicians and researchers?

Debbe McCall:

It is an excellent segue. As I mentioned, my group has an average age of 40. That’s 25 years younger than the typical AFib patient. My group also skews predominantly female, the exact opposite of the typical AFib patient that you see in research, or that most clinicians and researchers are going to see in their office. What gets missed most for us is the impact of the emotional and financial hit of diagnosis and how this changes our normal for life.

Debbe McCall:

As an example, depression and anxiety are really common for us, and especially in younger patients. For many of them, this is their first big diagnosis. And so they’re depressed or they’re very anxious and they’re asking for help with it. And the AFib specialist is going to say, “Talk to your primary for medication. This isn’t me.” And the primary is going to say, “Well, I don’t really know what works with your AFib and your AFib medications,” because some anxiety and depression meds actually make our AFib worse, “so ask the cardiologist.” And the cardiologist says, “No, AFib is electrical problem and I’m a plumber, ask the AFib specialist.” And where are we? We’re in the middle of this circle spinning around trying to get an answer.

Debbe McCall:

The short answer to that is ask your pharmacist. This is the most underused specialist, underloved, underappreciated. This is their specialty, drugs and their side effects and their interactions. Ask your pharmacist for a recommendation, and then go back, usually you have a better relationship with your primary, and say, “I talked to the pharmacist and they suggested drug A or drug B to help me for a little bit,” and the primary can get on the phone and talk to the pharmacist, they can discuss it, and choose one to help you in the short term.

Sue Peschin:

So when you were a kid, this is, again, we’re pivoting here, going to a fun question, when you were a kid, what did you imagine growing older would be like?

Debbe McCall:

I didn’t. I was an only child and I grew up around adults. Everyone around me was older, aunts, uncles, cousins, family, friends, grandparents, and the like. I only remember that there was a kid and there was an adult and nothing else. So I never thought about growing old at all.

Sue Peschin:

Interesting. So what do you enjoy most about growing older now?

Debbe McCall:

I’m a gamer. I play MMO RPGs. I’ve been a gamer for a very long time. So I choose not to think of it is growing older. In gaming, the longer you play the game, you gain experience and adventure level. So the higher the number means your character has advanced skills, better gear, more power, more stamina, and can do more challenging quest lines. So I consider myself an adventure level 62 right now.

Sue Peschin:

That’s awesome. So Debbe, it’s been a total pleasure to talk with you today. Thank you so much for being a guest on This is Growing Old.

Debbe McCall:

Thank you for asking, Sue. These were great questions. I really had fun thinking about them, and this is a very timely one to have.

Sue Peschin:

That’s all for this week’s episode. We encourage you to follow the Alliance on Facebook, Twitter, and Instagram. Please visit us at agingresearch.org to learn more about age-related conditions, diseases, and issues that impact the health of older Americans. And please subscribe now and rate us on Apple Podcasts, Google Podcasts, Spotify, or anywhere else you listen. Thanks so much and have a great day.