Advocacy Versus Self-Advocacy

In this episode, we will discuss the differences between the role of patient advocacy and self-advocacy. Today, we have guest speaker Megan Ryan. Megan is a 1998 graduate of Texas A&M University where she earned a Bachelor's of Business Administration in business analysis and business honors after graduating from Texas A&M

Transcript

IG Living Advocate - Episode 9

Advocacy vs. Self-Advocacy 

Hello, and thank you for joining us today. My name is Abbie Cornett, and I am the patient advocate for IG Living magazine. This podcast is brought to you by IG Living magazine to give readers an opportunity to hear from healthcare experts on topics important to them. In this episode, we will discuss the differences between the role of patient advocacy and self-advocacy.

Today, we have guest speaker Megan Ryan. Megan is a 1998 graduate of Texas A&M University where she earned a bachelor’s degree of Business Administration in business analysis and business honors. After graduating from Texas A&M, Megan worked for PWC, a global professional service firm for over 21 years. For more than 20 years, Megan has lived with common variable immune deficiency. Through her work with the Immune Deficiency Foundation, she helps to educate patients and healthcare providers about primary immune deficiency diseases and serves as a peer support coach and support group leader. She’s involved in state and federal advocacy efforts to support her patient community. Additionally, Megan was the sole U.S contributor to the International Patient Organization for Primary Immunodeficiencies Learning Expedition to identify, analyze and provide recommendations on issues brought about by the COVID-19 pandemic for patients with primary immune deficiencies. Megan is now a contributing writer to IG Living magazine and authors a quarterly Patient Perspective article.

Abbie: Good morning, Megan. 

Megan: Good morning. It's great to be with you this morning. 

Abbie: I’ve followed your work in advocacy for a while now and thought you would be the perfect person to have as my guest today for the topic of the role of patient advocacy versus self-advocacy and why both are critical for patient outcomes. Before we get started, why don’t you give our listeners a little background on yourself and how you became involved in both advocacy and self-advocacy.

Megan: Sure. So, it was over 22 years ago when I was out of college, I was beginning my career, I had gotten married to my husband, I was doing all those great life things and I was diagnosed with a primary immunodeficiency disease called common variable immune deficiency. Yes, that is a mouthful and, no, there’s nothing common about it. I was thankful for a rather quick diagnosis and that a treatment option was available. My doctor specifically advised me to focus on the positive that the treatment option was available and that it would be successful. I heeded his advice and focused on the positive, and still keep doing that today. Over the course of those 20-plus years, I have learned so much about being my own best advocate for my medical care, and learning from others, listening to others, trusting but verifying everything, as well as more recently getting involved and having a voice for our community — a voice for all of those who are on immune globulin therapies — and better understanding the issues around immune globulin therapy — some that even encumber patients and keep them from getting access to treatment that led me to be a voice on some key issues at the state and federal policy level to change some wrongs to rights and improve the treatment and care that our patients get on immune globulin therapy.

Abbie: You know, that’s so similar in a lot of ways to my personal story. I was young and on the police department and started getting sick continually and newly married. So, I’ve walked those steps before. It's interesting how close a lot of people’s stories are.

Megan: And everybody’s story is different. But it is a joy when you get to meet people because it took about nine years for me to ever meet someone with my same diagnosis. But when you do, you feel empowered to know there’s another person like me. I’m not alone.

Abbie: That is so true, Megan. You know, we’re both involved in patient advocacy, but our current roles are very different. In the past, I was very active in the political side of advocacy and ran a nonprofit in Washington, D.C. However, when I took the job at IG Living, my role was significantly changed, and it was more directed toward patient education and helping patients find the needed resources so they could access their care. Can you please explain to our listeners your role in patient advocacy and how your work is vital to patients?

Megan: So, both of those roles are very important. But what I have learned is once I got past getting to a level of comfort where I felt that I know I could also be comfortable very much advocating for myself, I had an opportunity to advocate for a broader group of people. And, going and talking to policymakers, legislators and their staff and understanding issues that affect our community. So, I am thankful I have amazing parents and one gave me the gift of speaking and being comfortable with speaking to just about any person. And so, it is through actual reach outs from national patient advocacy organizations where they provided me an opportunity, and it was really during the pandemic, to meet with the legislators on and their staff online and tell my story. And it was that first interaction in 2021, which really got me engaged and helped me understand that my voice matters and that my experiences are tools for change. 

And so that helped me understand that by sharing my experience, I could demonstrate to people making important decisions that policies impact real people and I was one of those real people that their policies impacted. I also learned that making personal connections with elected officials can be valuable, and you can influence their decisions when you tell them what is important to you and the community that you represent. So it was that first opportunity to have those legislative staff member meetings in 2001 where I got engaged and realized there are quite a few issues that impact our community.

Abbie: Oh, you know, you are so right. And I don’t share this with our listeners very often, but after I transitioned from the police department, I was a senator for eight years. And those meetings, with people on whatever the issue is, when you can put a face to a story and connect it to that bill that’s in front of you. Because a lot of times, all you’re presented with when you’re in public office is what’s called a fiscal note — how much is this going to cost? And the flip side of that is how much is it going to cost if you do it or don’t do it. What are the ramifications to the people and not only to the people but to the budgets because sick people don’t pay taxes to the same level. 

Megan: Exactly. They don't contribute and they can’t contribute to the economy. They can’t contribute to their communities. So, I want even those who are living with chronic disease to be valuable contributors to their community in the best way that they possibly can.

Abbie: Exactly. That’s a great way to say that. Megan, I am currently working on a column for our August issue of IG Living titled “The Importance of Self-Advocacy.” On that topic, I discuss how vital self-advocacy is for patients in managing their disease and particularly those who are newly diagnosed patients. Can you explain to our readers why you feel self-advocacy is so important to patients and how it can help them manage their disease? And how it helped you come to terms with your illness?

Megan: Certainly. So, self-advocacy, and that’s speaking out for yourself and those in your family and those on your medical team, is that foundation of the beginning 1) to embrace your diagnosis and 2) to begin to discuss with others what is important to you and to set goals for yourself and be very clear in communicating what your needs are.

So, self-advocacy is so important to get what you need, and it requires that you become a student of your diagnosis. I had an amazing leader who I worked with at PWC who trained all of us to become a student of the client and a student of the industry in which that client was working in. And really just dig in and learn all that you can. And I’ve applied that to my primary diagnosis. And like a lot of patients in our communities, they have complex needs, and some along the way acquire additional diagnoses. That’s the phase of life I am in. And so, I have learned to be a student of my chronic condition and keep learning and staying abreast of developments and asking questions and getting clear definitions on what this means. And that’s where I feel knowledge is power, and education makes me feel more empowered to have a voice for myself and to better communicate with my healthcare team what is important to me and the goals that I have.

You can live a really really impactful life with chronic illness if it is well-managed. And even if is not well-managed. When it’s not well-managed, that’s when you don’t feel like you’re contributing, even at home. So, getting to the point of feeling that your diagnosis is manageable and that you have power over that diagnosis changes the course of a patient’s life and changes the perspective for that patient.

Abbie: Absolutely. And you know, one other point about education, particularly for people with rare diseases or diseases that are maybe not even that common (we won’t go so far as rare because a lot of our patient groups have diseases most people have heard of), is the doctor who you’re seeing may not remember or may not really know what that disease is. Yes, your healthcare team does, but I can’t tell you how many times I’ve had a patient contact me and say, “I had to go to the ER, and the ER doctor had no idea what I was talking about.” And I can’t tell you how many times I’ve had ER doctors when I’ve been at a conference say, “Yeah, I’ve had people come up to me; I’m out there Googling WebMD.” Not all doctors specialize in your chronic illness disease state. It may have been just a small section of their education. That doesn’t mean that they’re bad at their job; it just means they can’t know everything. So, if you can go in and say, “This is what I have; this is what it means; this is what my blood work should look like” — that can really help.

Megan: All of that is so important, Abbie, and I want to say in two areas you have broad generalists like internal medicine doctors, primary care doctors, as well as emergency room physicians — both are critical members of the healthcare community, and I think it is important that patients who live with complex disease states be able to share. You need a primary care physician on your team. You cannot manage all of your care through specialists and subspecialists. You do need a primary care physician and, sometimes, it is hard to find that person. But I have been very fortunate to be able, and this is in the past two years, to find a primary care physician who was not scared of working with a patient with a complex condition and was willing to learn herself. And that first appointment, I brought to her the Immune Deficiency Foundation’s Patient and Family Handbook, and I introduced myself in a 30-minute sales pitch. No, it was actually 30 seconds, because I realized I had to get her attention quickly and offered her the opportunity to work with me. And I told her “I’ve tabbed out these sections of this handbook. This is what you need to know about me if you want to work with me.” And I said, “I can understand if I’m not the type of patient you want to work with.” And she looked at me, and she’s like “I'm always up for a challenge, and the amazing thing is do you patients ever come to me with a gift at the first appointment? Thank you. I will read this cover to cover to learn how to care for you.”

Abbie: I moved to California a few years ago, and when I first went to a doctor, he was like “Nah.” There is no other word. The last visit I had, we were looking for something in my medical records. He threw me half my file and said, “You know this better than I do. Find it.” And we’re sitting there in the office together, reading in his office, looking for something that he needed. And, he literally said, “You know this better than I do.” And that’s very key to your care.

Megan: That’s very key to your care. I avoid emergency rooms at nearly all costs, sometimes to my detriment. Yeah, I encourage patients to have a 30-second pitch to that emergency room doctor to get their attention. You cannot tell them your 30-year medical story. You have to have what is most important to you so they understand you quickly. Again, you have 30 seconds to get their attention. And that may mean consolidating your 30-year health history into 30 seconds. But you’ve got to get their attention so they can rapidly treat you and get you triaged and into the best improved state that you can in an emergency setting. So, again, knowledge is power. Knowing how to communicate your diagnoses effectively is also very important, and it sometimes takes practice. And, maybe, you need to try having a three-by-five note card that summarizes things so, in an emergency situation, you are not in a crisis and like all frazzled because of that emergency. You need to be prepared for the emergency.

Abbie: That is very true. The other thing, and this is a little caveat to that, is if you have a family member caregiver or spouse, they have to have some basic knowledge, too, because I have personally been sick enough where talking to the ER doctor wasn’t necessarily an option. And, if you’re fortunate enough to have a person in your life to go with you to the ER, they need to have a basic knowledge also and be able to advocate for you in that situation.

Megan: Most definitely, and even have a summary information about your health history so they can speak for you. In my case, what I have done is created a Google doc and shared with my husband, my best friend and my mom. The first page of it is what you need to know, the basics of me. Then, the following pages, and it goes on a little well maybe a dozen or two dozen pages, has all the details. But again, if I was in an emergency situation, that first page pretty much tells everything they need to know and would get their attention rather quickly.

Abbie: That is a fabulous idea. Megan, besides educating yourself, because that is very important, patients a lot of times need additional emotional or social support. What are some groups that you would recommend or how would you recommend that they reach out to get that additional help that they need?

Megan: First, I want to reflect back on my diagnosis in 2001. My physician told me specifically, “Don’t go searching on the Internet.” Well, in 2001, thankfully the Internet was not what it is today, and I didn’t go wildly searching. In fact, he gave me a little pamphlet that I still have that was from NIH, about 10 pages about primary immune deficiencies. And, a lot has changed in those 20 years, thank goodness, but that’s what I relied upon, and that served me well for a period of time. 

But what I will tell you is it is important to focus on trusted sources of medical information from patient advocacy organizations. We have patients in this community who are readers of IG Living magazine who are from a broad group of patient communities, and almost all of those patient communities have national or international patient advocacy organizations that have vetted medical information that are an outstanding start to becoming that student of your diagnosis and staying up to date with information — whether it be through webinars, reading blog posts, podcasts, etc. 

I encourage patients not to go to Dr. Google as their first place for medical information. The advent of social media has offered online support groups and online information, but the age-old statement “trust but verify” is you may learn things on those online forums that you need to vet with your medical team. Your medical team is always the one who you should be collaboratively making decisions with. I also encourage patients to use the resources of those patient advocacy organizations for patient support groups. The pandemic has brought a lot of negative changes to our world, but many of these patient support groups went online with Zoom meetings. So those are no longer in-person meetings, they are now on Zoom, and can be accessed in the comfort of your home. Whether you’re working out of town or on vacation, they’re still accessible. And so, with those support groups, you don’t even have to be geography-bound. 

Tonight, I will lead the IDF's Get Connected group for Houston. And we have people who come to Houston from all over the state and like the state for their medical care and like to stay connected to those who know the medical community in Houston. But we have people from Florida, Kansas, New Jersey and New York who are becoming a part of our group. Perhaps it’s good old Texas hospitality that keeps them coming back, but they find the group has the right vibe for them. So, finding that support group that you can connect with that gives you the support you need. 

And, it’s also finding people in your community who you can engage with and can be supporters of you. I have that squad of people who I have met through the patient community. I have one friend, we probably text daily, we have similar passions, we love to travel, we also love gardening, and so we’re always sharing about what’s happening in our lives. Yet our diagnosis is not central to that. We’ve just become amazing friends, and she is a person who I’m always going to and vice versa. We’re always helping each other out. So, finding that squad that you can go to to support you. I would be remiss if I didn’t mention patient support groups are not substitutes for mental healthcare. And you must also consider if you do need that support to use mental health resources as well. 

Abbie: Yeah, that is something that I had failed to mention when we were talking before the meeting. So many patients with chronic illness have a comorbidity of depression or anxiety and, absolutely, as part of their self-advocacy, reaching out to a mental health provider and finding that care is as important as your physical care without a doubt. 

Thank you so much. I've really enjoyed our talk today, and we’re kind of wrapping up. If you had one last piece of advice to give patients, particularly the newly diagnosed, what would it be?

Megan: When you’re newly diagnosed, it may feel overwhelming. But I would say that you are in a place where you have treatment available and to focus on the positive. Yes, you may have been through a diagnostic odyssey that led you to your diagnosis that took years or months, and it may seem overwhelming to you, but focus that you have the diagnosis and that treatment options are available. And the beauty of the world that we live in, they are rapidly evolving. When I was diagnosed, we did not have the innovation in 2001 that we have today that has led to different modalities of IG infusion therapy. I only relied, my only option, was IVIG in a clinic setting. Today, we have so many more options: home infusion of subcutaneous infusion, facilitated subcutaneous infusion. And I think in a matter of years, we will see some different, whether it be pump technology or delivery technology, that will continue to advance. So, focus on the positive is my key piece of advice, and find people who can be on the journey with you. Find people who are your support system and lean into that support system.

Abbie: Thank you so much. It’s been a real pleasure having you as our guest today. And thank you again for explaining your role as a patient advocate and how important self-advocacy is. I’m sure our listeners are really going to enjoy this episode. It was super informative.

Megan: Thank you, Abbie, for the invitation to join you.

Abbie: Listeners, thank you again for joining us today. Additional information regarding this podcast can be found on our website at www.igliving.com. If you have a question that was not answered, please contact me at acornett@igliving.com. 

Look for the next IG Living podcast announcement on our website for the opportunity to submit your questions.  

IG Living Advocate is a copywrite production of IG Living magazine, published by FFF Enterprises, the only magazine for the immune globulin community comprised of patients who suffer from chronic illness and their caregivers.