Quality Insights Podcast

Taking Healthcare by Storm: Industry Insights with Bobbie Reed

• Dr. Jean Storm

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In this episode of Taking Healthcare by Storm, Quality Insights Medical Director Dr. Jean Storm speaks with Bobbie Reed,  caregiver advocate and American Kidney Fund Ambassador. 

Bobbie discusses her personal journey as a caregiver for her son and mother, her advocacy work for kidney disease awareness, the role of social media in finding her son a kidney donor, and the importance of support groups. She also highlights legislative efforts like the Living Donor Protection Act and emphasizes early detection, better communication among healthcare providers, and utilizing AI resources.

If you have any topics or guests you'd like to see on future episodes, reach out to us on our website.

Publication number QI-100325-GK

Welcome to "Taking Healthcare by Storm: Industry Insights," the podcast that delves into the captivating intersection of innovation, science, compassion, and care. 

In each episode, Quality Insights’ Medical Director Dr. Jean Storm will have the privilege of engaging with leading experts across diverse fields, including dieticians, pharmacists, and brave patients navigating their own healthcare journeys. 

Our mission is to bring you the best healthcare insights, drawing from the expertise of professionals across West Virginia, Pennsylvania and the nation.

Subscribe now, and together, we can take healthcare by storm.

 Hello everyone, and welcome to another episode of Taking Healthcare by Storm. I am Dr. Jean Storm, the medical Director of Quality Insights, and today I'm joined by Bobbie Reed. Bobbie is a caregiver advocate and American Kidney Fund ambassador. Bobbie's journey began when her son, Alex, a healthy college athlete, was suddenly diagnosed with kidney failure shortly after graduation.

Since then, she's not only been a tireless caregiver to both her son and her mother, but she also is a powerful advocate for people living with chronic kidney disease, something that is so. Prevalent in the United States and across the world. In this episode, we'll talk about her personal caregiving experience, her work to build support systems for patients and families.

The role of social media in finding a living donor and her advocacy for critical legislation like the Living Donor Protection Act. So whether you are a caregiver, a patient, or healthcare professional. Bobbie's story will offer you practical advice and inspiring insights, and you don't wanna miss it. So stick around and hear it.

Bobbie, Roberta Reed, thank you very much for joining us today. Thank you very much. I'm really glad to be here and hopefully I'll be able to help others along the way by doing this. I'm sure you will. So can you start by sharing your personal journey and what led you from being a, mother and caregiver to becoming an advocate for kidney disease Awareness and support.

I always tell people that I am committed to helping other people as a result of the living donor. A 57-year-old man who gave a 23-year-old. A kidney that we didn't know from New Jersey that I found for him through the marketing plan that I wrote. And I do this as a way of saying thank you every single day because you don't pay someone to do that.

And I really, truly do walk the talk.  stand behind it and I help as many people as I can in a variety of ways. So very important and I'm, we're gonna talk about it, but a social media campaign that found your son a kidney, it's just amazing. Mm-hmm. So what are some of the biggest challenges you faced as a caregiver, both for your son and now for your mother?

And how have those experiences shaped your advocacy work? Well, my advocacy work has been shaped, as you said, because of my mother who passed away now December 26th of just last year, day after Christmas from diabetic induced kidney disease, and she had cardiac arrest right in front of me and my son, who's now had actually two kidney transplants, which we'll get into later.

But what really. The pitfalls or downfalls of having been being a caregiver and the obstacles that I faced were communications between all the doctors finding out sooner. Do you know that when my son actually became ill with the high blood pressure right after graduation from college, in order to get on the transplant wait list, obviously they do all kinds of testing and one of the things that they did is they went back to the NCAA.

'cause my son played baseball for Penn State and they ask them for the medical records.  You have to clear medically every year to see if there was any indications of this high blood pressure or kidney disease. While he was going through college 'cause you don't lose your kidney function in a matter of just four short months.

And that's what happened to him and they were , not able to find anything. Which brings us to another obstacle, which I'm absolutely certain that many kidney patients face today is not knowing. And it's like a silent killer. Once the damage is done, there's no going back, but. If it was detected earlier or early enough in other people through testing, like doing a $7 test, when you go see your primary care doctor, it can be controlled and managed in a lot of dead ways, whether it be diet, exercise, or so forth to catch it earlier as opposed to walking the path that we did.

Absolutely. And we have a, chronic disease prevention program associated with our company, and it, works getting people connected to the right resources  nutritionists, dietician. Primary care physicians. It can be controlled, but you have to be aware that you have the disease first, as you pointed out.

 Yes, exactly. And as well as that, making sure that. These doctors communicate with one another. 'cause all the portals. They don't talk to one another, your patient portals and stuff. And through that you have to also ensure the fact that the patients and caregivers voices are heard with the doctors many times.

And that the doctor obviously has their agenda that they wanna go over with you when you go to see them. And. If you have questions or concerns, rather than going into a meeting with your doctor, whoever it is to try to remember what they are, it's really not the wise thing to do. It's best to take a list of your questions with you that you typed up ahead of time.

Actually take two copies, one for the doctor. One for you. That way when you go in and you tell the person examining you at first when you check in, these are the concerns that I would like to talk to the doctor today with. Can you see that he gets this? That way you are setting the tone and making sure that your voice is heard and the reason for the second list.

It's for you so that you can write down the answers and actually have that as a record of your visit, what you talked about and during your visit, so it holds the doctor accountable as well as gives you a foundation to refer back to as opposed to trying to remember once you leave there. That's a great tip.

So you've worked to establish support groups and connect people to resources. What role do support groups play for patients and caregivers who are dealing with chronic kidney disease? support groups Provide or play a role as a foundation or a resource for you? I know myself. I don't take time enough for myself.

I'm doing so many other things, but also too, when you are ill, I, my opinion is it's the person who's ill or the chronic condition, it's their job to be sick, the caregiver. It's my job to, to feel the. Other things that are going on and to make them run smoothly. I don't have answers for everything on earth, but support groups act as a resource and as a tool that you not only share your information with others, they share theirs with you.

And by connecting the dots and remembering those experiences, it can make your pathway much easier to navigate. They also provide resources outside. The center of just for caregivers. For example, if you're looking for a kidney donor or you want, you're interested in being a donor, there are support groups out there.

The people that operate them are medically qualified, like they, they know the information to go out and connect the dots and to reach out and explain things more clearly to you so you have a better understanding of it, rather than assuming or trying to search out those answers on your own. Yeah, challenging.

So you, I'm sure you're full of advice 'cause you've had so much lived experience. What advice would you give to caregivers who are just beginning their journey with a loved one, diagnosed with CKD or potentially starting dialysis, which can be really scary for a lot of people.  Exactly. I have a couple pointers here that I'd like to make on that topic.

First of all, if you're dealing with your nephrologist and he's saying, well, you're reaching the point where your kidney function's not quite there, we need to.  Get you started on dialysis. I really, I'm a firm believer in that you have a good kidney educator, a kidney educator, from the standpoint that they can educate you on what your options are and let you make the choice rather than your doctor making the choice for you.

For example, in center dialysis. Home hemodialysis or home peritoneal dialysis  and let you make the decision to, what one would you feel would best fit you and what is all involved with it? Another resource that I would highly recommend is rather than you trying to figure out how to get on Medicare, if you're an end stage renal failure, many people or all people generally sign up for Medicare regardless of their age.

They're eligible for it. You need to have help in navigating that, and the tool that I find most resourceful was the social worker. It's their job to do things like this and to help you along the way. And it's oftentimes, it's not what you know, it's who you know. And that's what happened with my son because he had to go on dialysis.

We opted to do home hemodialysis. And what I learned, rather than waiting the 90 days to be eligible since we were doing home dialysis, you're eligible right away. They were able to cut through the red tape and the very next day we were active on the list with coverage for that. So you can use them as a resource as well.

Those ones are important, but also too. Did you know that the various kidney organizations out there offer resources for you to make your pathway easier? The kidney organizations are the National Kidney Foundation, the American Association of Kidney Patients, the American Kidney Fund, and I also am active with pcori, which centers on research.

If you're traveling that path, you might wanna look into. Research has been done with that, and maybe you might qualify for a research study that would give you a step up on navigating this as well. The National Kidney Foundation in particular, if you're faced with having to find a kidney donor and go on dialysis, there's a program that they have, it's called the Big Ask Big Give.

That big Ask Big Give program is actually the marketing plan that I developed to find my son a living kidney donor. And it teaches patients how to let other people do the asking for you because so many people have such difficulty in asking for help or saying, Hey, I need a kidney, that kind of thing.

And what it's based on the basis is that you only need to ask one time. but after that, you let that ask, do the asking for you. And in our case, it was so productive that towards the end of finding his donor, I had. Newspapers and television stations and things like that, people calling me asking to hear my story.

So I believe that it's very important. The last thing is to be able to effectively share your story, but if you're new at doing this. Having other people do the asking for you, whenever anybody does anything, there's two things that you need to do. The first thing is I wrote them all a handwritten note.

Thank you for your help and support in my journey. And the second thing I did was I shared it on social media, acknowledging them. Publicly, look what this person did for me, or look what this organization did for me. Maybe you can do the same, and please share this with all your friends and acquaintances.

So, multiplying the exposure beyond the limits of any people that I would have, and I do. It's a free program. You can you know, look at the Kidneys, national Kidney Foundation website. Look up big, ask Big give, and find out where there might be a program being presented. I know in Pittsburgh here, they're doing a program on September 14th at the Aviary, and people are invited to attend that and learn.

If you're in the Pittsburgh area, you want to check with the National Kidney Foundation offices here, but overall, you can contact the National Kidney Foundation on national level and they'll, refer you to where the closest one is. Yeah, those are some great tips and I feel like people who are starting out, those tips are like lifesaving, so I really mm-hmm. appreciate you sharing those, participating in a support group too. There are various support groups out there. For example, kidney Solutions based out of Texas. They meet on Monday nights virtually, so you don't have to go anywhere. And the gentleman that runs that is a 37 year recipient of a kidney transplant.

He's also a registered nurse with a master's degree. So he has considerable experience and knowledge in that and connecting the dots and that you find support there. Their organization also supports people who are thinking about donating, but have questions, cause believe it or not, anybody who wants to donate a kidney has to go through the exact same testing and being in really good health as.

A recipient does, and they have a person there who actually works specifically with people interested in donating, and they do have connections that they'll contact the transplant centers too. If you're wondering why you're not progressing and getting on the list or  testing more people, they can work with you and with the transplant centers to help you navigate as well.

Really great advice. So we're gonna shift and talk about social media, right? Mm-hmm. And I know a lot of people have strong feelings about social media, good and bad. So you use social media very intentionally to help find a kidney donor for your son.  How do you see social media as a tool for advocacy and support within the chronic disease community?

I use social media to help. Getting the word out about the different things that I participate with I'll give you an example. Last week I met with congressional offices in their local districts, like in around my home 'cause it's during the August recess and after that meeting I went on my Facebook and social media and I thank them and I tag them for.

Listening to the ask that I was making on behalf of the kidney organizations of legislation and improvements that they would impact or they could have impact on. By doing that, by tagging them and the kidney organization, they get noticed that somebody's talking about them on social media and it gives them a pat on the back so to speak, that their people in their offices are doing the right thing to reach their constituents and people like that.

It's just very, very important and a lot of people don't realize that, and I let people know that. But whenever I do a tabling event or any type of thing, I put pictures, I take a picture, pictures speak a thousand words. So it's really good to put a picture there on social media along with a story, connecting it to your personal experience that way.

It's more sincere and truthful as opposed to just saying, support the National Kidney Foundation. You need to give a reason why and make it personal when you make it personal. On social media, people tend to believe it more as real and truthful and they too can adapt to it and get feedback from it and find a resource there.

Yeah, I, yeah, I love that. And I agree pictures are very, very important. So can you explain what the Living Donor Protection Act is and why it is so important for patients and potential donors alike? Sure. I'll give you an example using my personal story. When my son. Graduated from college and he ended up in end stage renal failure and on dialysis and needed a kidney.

We were trying to go everywhere and remember me saying he played baseball for Penn State. Well, his Penn State teammates really wanted to help him. They wanted to  be organ donors, but they couldn't because they didn't have the protections of a Living Donor Protection Act, and what I'm talking about is they had bills and expenses to pay.

Having just graduated from college, they had jobs that they needed to keep you know, they couldn't afford to lose. They had. Families and so forth. Or they were just starting families. They couldn't neglect them and sometimes they were even  a lot of times they were outta state. 'cause Penn State's a pretty big school.

What The living donor and they needed to get insurance too. What the living Donor Protection legislation does is it would provide protections to individuals to guarantee that they would not lose their job. Number one. Number two, it would give them protections in that they would have access or resource to being able to secure health insurance or life insurance down the road, and they couldn't be held against them because they were a kidney donor Oftentimes too, it could provide.

Income or not, I don't wanna say income, but support financially in the form of being able to get to where you need to donate and. If you needed a caregiver or somebody to watch your dog or children or whatever, sometimes you're in that it's respect. People don't have that kind of money to do it. It could provide resources for that as well.

Where this ties into my personal story, remember me saying that I talked to my legislators and told them  what we were faced with and you know what we would like to have happen. Well, my local state representative here in Pennsylvania. Senator Lindsey Williams. I told the story to it and she knew and there was legislation proposed in Pennsylvania.

Do you know that she went to the Senate floor and she stood up there and she told our personal story to the Senate and the reason why these people couldn't help us and what the living donor protection legislation would do for them. So that they would be able to donate. However, you have to remember one key thing here that would be within Pennsylvania, it's not on a federal or a national scale, but as soon as she did that talk, they voted.

Now Pennsylvania does have living donor protection legislation. It was passed and I was getting phone calls and I chose to ignore 'em 'cause they were coming from Washington DC but New York, which is where the kidney organizations are based, when she was giving her talk, 'cause it was publicized and then after the fact I listened to it, those calls said, Bobbie, they're talking about you on the Senate floor in Pennsylvania.

You gotta turn the TV on or whatever and watch this. But I didn't know that so I missed that presentation altogether, but that legislation was passed in Pennsylvania, but it's only applicable to Pennsylvania residents on a federal scale. On a national scale. People need to contact their representatives.

There is legislation and has been for years. Every time they keep renewing it or re-upping it, reintroducing it, but it hasn't yet passed. And the more people that speak up. The more likely it would be that these legislators and senators would co-sponsor that legislation forcing it to become a law. Go to vote for that and it's, it would give the protections nationwide to no matter where you live or work.

Right now, the Pennsylvania legislation is actually up for revision in that they want to give tax credits to donors who choose to donate a kidney or any organ for that matter, not just a alone, a kidney, part of their liver, whatever. But tax credits when they do their taxes for up to like five years following the donation.

It hasn't yet passed, but it's something that they're working on. It wasn't included with that. That is the Living Donor Protection legislation right now, we have to depend on like maybe the American Kidney Fund who provides support financially to donors who need help financially to get to where they need to donate the kidney and.

Move forward from there and they just apply to them and they don't have to pay the money back. That's one organization that does that. In addition to that, the American Kidney Fund also would provide financial support. If you, as the recipient or kidney patient, do not have enough money to pay for your insurance coverage, they'll pay your bills for you.

It's part of their benefits and it's free for the asking. You just need to qualify  meet their requirements, that kind of thing. But it's worth a phone call to look into doing that. Oh, a hundred percent, yes. Agree. Mm-hmm. So maybe is a common misperception that people aren't aware of, but let's talk about some other common misconceptions or gaps in public understanding about chronic kidney disease that you wish more people understood.

I wish that people understood that Right now there is no rule or law or anything in place for your family doctor or your to do a check on your kidney function. When you go for your appointments, like your annual checkup, do you realize  that test costs $7 and your insurance would cover it?

And if it could prevent you from having to go on dialysis and disrupt your life from needing a kidney transplant and all the medical bills and all the, coverages and stuff that you have to, the path of the road that you have to go down by doing the early detection. It's just really important you could eliminate all that because once it's detected, it can be controlled through.

Management and it really slowed down. Now, if you've lost some kidney function, you're not gonna get, you're not gonna go back and fix the damaged kidney. However, you can stop it or slow it to a halt in its path by treating it early on. And your primary care doctor, once it is picked up on there, can refer you to the right specialist to handle it for you or to work with you on it, because they're not experts in every area, but.

Getting that early detection is just so important. In fact, that's one of the main things that we advocated for this year in doing our meetings with the legislators to tell them that it's essential that they look at that and do that. That, that, that was definitely a roadblock, is not having the early detection.

A lot of people too, one of the other. Roadblocks  is they feel really disgruntled and disappointed and they can't eat anything. They can't do anything. They feel so restricted and  it draws them down and causes like depression. The American Association of Kidney Patients provides excellent resources on dietary management and recipe cards that use normal things, and it's not really, cumbersome to do that there. The recipe card packets come in like maybe 50 in a packet, and I believe they charge $5. You need to go on their website and check it out. They also give you free access to, or can refer you to a dietician that manages kidney disease and diabetes, which are the,  things that you need to look at because the diet is special and specific.  Particularly with diabetes and kidney disease. There's a lot of restrictions and you have to try to figure out something that you can eat, but those recipe cards can definitely help you navigate that. Yeah  I agree. And I think people don't understand.

They think it's just so difficult, but I agree. Just small little tweaks to diet, and we also have some resources I think we can drop in. Mm-hmm. For the podcast. Yes. Mm-hmm. So, looking ahead, what do you see as your next steps in advocacy, or what future direction would you like to see the kidney disease community take to better support patients, caregivers, and living donors?

The next steps that I believe that are important.  There's a couple. First of all, I would really like to see communications being improved. That meaning that the. Patient portals and the doctors communicating between themselves that there is like an equal platform, that it would be accessible so that everybody is on the same page and moving forward too.

I really do foresee, and I think that you're seeing it now too, artificial intelligence, ai. Coming into play. We hear a lot about that these days on tv, and I see that becoming more and more prevalent and I think that. People should really learn a little bit more about that. I use chat, GPT and I tell it, you can ask it any question you want in the world.

And if I need to have a question asked to find out information on a subject matter, I'll ask chat GPT and it'll formulate whatever I tell them to do. Most recently, I used that for the National Kidney Foundation Kidney Walk. I registered to raise money. To support kidney disease and I wanted to get the word out there to my friends, relatives, or other organizations about that.

I asked Chat GPT to take my basic information, maybe from my resume or different things that I've been involved with. 'cause you can enter those attachments in there and develop me a one page picture oriented flyer on how to donate to my. Campaign to raise money for kidney disease and I had to include a QR code on one page.

I can print it up now and distribute it, and it makes it much easier for people to be aware of the kidney walk as well as donate to my fundraising page. That is a great idea. It's a really great use of ai. Yes. Yeah. You need to formula, I think if you're sharing information with people, giving them information, or doing a tutorial on.

Chat, GPT. 'cause some people too might be really afraid of like the computer and figuring out how something works. If you could just maybe make one link, say, click here to learn more about  chat, GPT. Use that key word on how to let that. Formulate your question to the point to get, make, move you along better you know, or get better success.

I think that you would catch the eye more so of people and make their path easier for them. Yeah, that's a great use, Bobbie Reed, this has been an inspiring conversation. Thank you very much for joining us. We will link everything you mentioned in the co, in the  podcast.  But good luck. Well, thank you.

Wish you well on your advocacy efforts and I'm looking forward to seeing you on the national level. Speaking about kidney disease, I have done that on several occasions already. I've spoken before the National Quality Forum, the national academies of Science Engineering Medicine. I spoken at the PCORI pre-conference meeting about the importance of participating in research to, for the betterment of everybody.

A lot of different things like that. One other thing that I'd recommend too, I have this, I have a one page reference list of resources. I suggest  maybe if you could come up with a resource list that you could give to your people who you're trying to educate, that would be helpful for them too.

And bear in mind, tell them they don't have to do everything at one time. They can just do one thing at a time that might interest them to find the answers that they're seeking. Absolutely. Great advice. Bobbie Reed, thank you again for joining us. I really enjoyed the conversation. Thank you. I enjoyed it too.

Thank you. Anytime. Thank you. Bye.

Thank you for tuning in to Taking Healthcare by Storm: Industry Insights with Quality Insights Medical Director Dr. Jean Storm. We hope that you enjoyed this episode. If you found value in what you heard, please consider subscribing to our podcast on your favorite platform.

If you have any topics or guests you'd like to see on future episodes, you can reach out to us on our website. We would love to hear from you.

So, until next time, stay curious, stay compassionate, and keep taking healthcare by storm.