Episode 56: How to Advocate for Infusion Patients with Alicia Barron, LGSW

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Transcript: How to Advocate for Infusion Patients with Alicia Barron

Amanda Brummitt: We Infuse podcast, episode number 56. Welcome to the We Infuse podcast. My name is Amanda Brummett. In every episode, we give you a seat at the table as we talk to Infusion Center owners, operators, and experts so that you can get the insight you need to run a thriving practice. In this episode, we talk with Alicia Barron. Alicia is a social worker with a rich background in healthcare, nonprofits, advocacy, and even podcasting about inflammatory bowel disease. She’s currently the executive director for Infusion Access Foundation, and we are so excited to have her on the show. Alicia, thank you so much for being here with us. I’ve shared a little bit about you with our guests, but I would love for you to start by giving us your background.

Alicia Barron: Absolutely. Well, Amanda, thank you so much for inviting me to be on the show. It really is such a pleasure and an honor to join you. Yeah, I am a social worker by background and I got involved with the chronic illness community and with various nonprofits that relate to these types of diseases a million years ago. It feels like, I started out as a volunteer with the national MS society when I was 19 and have stayed involved with them for a very long time. And the reason I got involved in this community at all is because my dad was diagnosed with multiple sclerosis when I was 16. And so that kind of started my journey of getting to know these types of chronic illnesses and getting involved in these types of communities so that I can give back to my dad and my family and to be able to really help families like mine. So that’s how I got involved in the chronic illness community and social work just became a natural extension of that. And then I got a chance to work with these types of, Organizations as well. So it’s been really rewarding and I’ve had a chance to educate people living with these diseases and do support services and work on advocacy initiatives as well. So it’s been such a pleasure to get to know these different types of diseases and to again, help families like mine. That was really my goal was to try to make this easier for people who are either living with the diseases or who are affected by these diseases. So long time in this field. It feels like it.

Amanda Brummitt: Yeah, that definitely gives you a unique background. for most people that met in the industry and the world can definitely use more social workers. So thank you for being.

Alicia Barron: I think so. But then again, I’m a social worker. So it feels like that’s I should say that, right?

Amanda Brummitt: Yeah. Well, maybe so. What about infusion access foundation? I think a lot of our listeners are probably familiar, but will you just go ahead and start at the beginning and tell us all about the organization?

Alicia Barron: Absolutely. I’m happy to. so the infusion, if you are familiar with the infusion access foundation, it’s probably because our sister organization, which is the national infusion center association. So NICA, that’s where a lot of these folks, their members, or they probably know us through that. So NICA was the original sort of organization that got started and they were really representing infusion center operators and infusion centers and the best interests of them. What they discovered along the way is that there’s also patient specific issues that were coming out of these. Relationships, there is things that were happening with patients, not having access to medications are really struggling in certain ways. And so once they decided they really wanted to just specifically focus on infusion centers, the infusion access foundation was born as the patient sort of facing side of this issue. And so. Fusion Access Foundation is still pretty new. We started back in 2021 and our 501c3 organization, whereas NICA is a 501c6. There’s a distinction between those. One is a trade nonprofit and we’re a patient facing nonprofit. And so our goal is really to ensure that patients have access to these provider administered medications. And obviously, as this a lot of times happens at an infusion center. but patients are also getting infusions to their homes or they’re going to hospital systems that have in place infusion centers as well. So patients get infusions in lots of different ways and many different places and so we want to make sure we’re representing the needs of these specific patients because a lot of times these medications that we’re talking about as everybody here that’s listening to this podcast knows very well, they tend to be really expensive and a little more difficult to get. And so we really are focusing on trying to ensure that patients can get the medications that they and their doctor deem best for their diseases in a timely fashion and as cost effective as possible. So that’s the infusion access foundation really focuses our work there. We do that through education. So we educate patients on these types of medications. So why do they have to come through An infusion or an injection, what makes them special in that way, or and or what are these specific diseases that they’re working with? And again, why would these medications be prescribed? We also do things like just preparing for an infusion. what do you need to know before you walk in the door of an infusion center that you should know to get better prepared for this specific thing? We also do education around the research around these types of things and around the insurance issues that you may face. So things like what’s a pharmacy benefit manager, what’s a copay card, what is copay assistance, and things like that. So people have that kind of full range and all of the tools that they need in order to really take these medications. The other thing, of course, that we do is we do a lot of outreach to different communities to make sure that they are aware of us and are able to partner with us. And we do some advocacy work as well around legislative advocacy, trying to change policies that are specific to these types of medications. So things like step therapy reform or co pay assistance reform or reform around the insurance industry, or sometimes even around the affordability side of things. And then also sometimes we do advocacy that’s more on the patient specific side. So we’ve had patients come to us and say, Hey, I’m struggling in a specific way with my insurance company, or we’ve had infusion centers come to us and say, Hey, we’re struggling with this specific thing. Can you help us? And some of the other nonprofit organizations have come to us to say, can you help us try to work on this issue? Can we work on this together? and some of that has been around, co pay assistance programs. So there’s been some pharmaceutical companies that either have had. not as robust as a copay assistance program as they could or didn’t have a copay assistance program for some of their medications. And we’ve been able to go and talk to these different companies about, the needs of their patients and why they may want to consider changing their policies. And as you can imagine, sometimes we’re successful and, sometimes we’re not, but we’ll keep trying. So that’s the range of the work that we do, but really all of it is focusing on the needs of the patients in these communities and how we can make this. Journey, for lack of a better word, easier for them.

Amanda Brummitt: That is great. It’s hard enough for these patients to deal with the disease processes that they’re living with. So I love that you guys are hopefully taking some of the friction out on the back end and making a little bit less painful for them.

Alicia Barron: We hope so. We definitely try, but you’re right. It is a, it’s an interesting process to have a chronic illness and to have all these different pieces to deal with it. So hopefully, yes, we can make some of this a little bit easier for folks. Yeah.

Amanda Brummitt: Yeah, of course. So being a social worker, I feel like that surely has, affected the lens, which you look through things and change your perspective and approach. How would you say it’s affected how you handle infusions?

Alicia Barron: Gosh, that was the question that when I, when you sent it to me, I was like, I don’t know how to answer this to be honest. I think what we learned in social work school is really, we focus a lot on equity. And so I think that’s probably the lens that I look through a lot when it comes to these types of medications. these medications have really revolutionized the way people are able to live with these diseases. the, Ability of people to be able to continue to work to parent the way that they want, and to continue to function in society is really dependent on the treatment that they get. And infusions, especially some of the new ones coming down the pipeline are just so remarkable and how they can help control disease. And so I think to me, that feels like something that is really falling into the equity space, it’s like, this is allowing people to function in society in a way that perhaps wasn’t as accessible to them before. And also, Able to control diseases for folks that maybe, they really weren’t able to control their disease before. And so, to me, this makes a more equitable space. I think the other side of the social work coin that I definitely would look at is, I have a number of friends that are within the hospital social work system, and obviously that’s not the space that I lived in. But I think. they have seen these types of medications really, again, allow patients to really have a different quality of life, a different lens that by which they’re able to look through and allowing these physicians to really have more tools in their toolbox to be able to really change lives. And certainly, social workers are big on the advocacy space. I don’t think people realize this, but there’s a huge aspect of our education. That really focuses around advocacy and advocating for the needs of your community in whatever way that is. And in my case, I happen to work with the chronic disease community. And so certainly that passion that I have for advocacy is definitely layered into everything that I do with the Infusion Access Foundation and really what I’m going to push the organization to really work on. I think this is such an important thing for us to be able to bring patient voices forward, to be able to really talk about what this means to them. How this has changed their lives, but really also how some of these policies get in the way of their ability to really have that really great quality of life and to be able to really again function in a way that they and their doctor feel like is the best option for them. So that is all very social work based. and we also have another social worker on staff, Krista, so I know she will be happy to hear you ask that question of me as well, because we both look at this, Krista is our director of communications, and we both look at this really from that social work lens, and so I think, being a social worker gives you a lot of tools. Social workers do all sorts of things in the community, and so I think this is a really great way for me to, and Krista both, to be able to bring our social work skills to the table to really help advance the needs of these patients.

Amanda Brummitt: Absolutely. And I think we can all agree that health equity is super important and something that all of our patients deserve and need. so I love that. You and Krista are there to advocate for them.

Alicia Barron: It’s great to have another social worker on staff. I love it.

Amanda Brummitt: Absolutely. So speaking of advocacy, what advocacy issues are you all currently working on?

Alicia Barron: Yes, we have a number of issues. If you look on our website, obviously, you can find the full list. But the ones that we’re really going to spend the most time on, especially this beginning of part of our year when you and I are talking, we’re about to leave for a hill day this week. And so that’s very exciting for us to be able to bring patients to Capitol Hill to be able to talk about these issues. And there we’re going to focus this. specifically on the safe step act, which is really trying to reform step therapy policy. So if you’re not familiar with step therapy, I’d be shocked because I know you’ve all been through it. And that is where your doctor says you should take this medicine, but your insurance company says, wait, hang on before you get to that medicine, you have to try this, one, this other one. And maybe this one too. So, maybe even two steps before you can get to the medication your doctor really wants you to be on. And that’s really frustrating for patients. It’s frustrating for doctors. It delays care. And I think what I get really frustrated by especially is the fact that, many of these folks go to physicians that are very specially trained. When you have a chronic illness, you typically aren’t going to your general practitioner. You’re going to a doctor that specializes in your disease. And that disease only, typically not even anything else. And so for them to make the determination that this is the best medication for you, typically that comes with a lot of clinical practice and a lot of education and continuing education. And so they’re really the best person to try to help you make that decision of what’s best for you. And now all of a sudden the insurance companies get involved. And that’s so frustrating because these doctors have been trained and your body better than anybody else. And so the determination should be in your hands. And so we’re really working to try to at least. Reduce those steps down. So maybe it’s just one medication before and also to make that appeal process so much faster so that it’s not you having to wait forever and ever It’s that they have to turn around a decision much faster when you do appeal. And so that to me is really important. And it’s something that we and. Other disease based nonprofit organizations have been fighting for a really long time. And so I’m hoping that we can, help make some traction on this issue because I think our legislators are starting to hear us and are starting to understand that this is really a big problem for our community and is not allowing people to get the care that they think is best for them. So that’s number one. The second one we’re working on is called the Help Co Pays Act, and that is really trying to change co pay accumulator or co pay maximizer programs. So what happens is your insurance company steps in and says, hey, you’re getting assistance from somebody and we’re not going to count that money towards your co pays, which is Dumb, frankly dumb. I don’t know a better way to say it because what we’re talking about is real money. So many of the pharmaceutical companies will give copay cards, copay assistance cards to people that are on their medications because they, again, are pretty darn expensive and many people have Really high deductibles that they have to meet or copays that they have to meet. And so what this does is it’s cash that is on this card that goes towards your copay. And the insurance companies have caught on to this, and they’ve basically started to put some things in place called copay maximizers or accumulator programs. They couch it in these. Pretty terms. And really what it’s saying is that like, we’re not going to count that money. We’re going to, you still going to end up having to have a bill and patients don’t always catch that. And so what can sometimes happen is they go to their infusion center for the first two months and they think they’ve met their deductible. And then they go for their infusion on the third month. And all of a sudden they get a bill for 2, 000 and they’re going, what the heck happened? I thought I had already paid this. And so we’re really looking to try to change that policy because what we’re talking about is real money. It’d be the same thing. If Amanda, you, like you loaned. Give me money to go pay for my infusion because I couldn’t afford it. And then all of a sudden the insurance company is just like, Nope, Amanda’s money doesn’t count, even though it’s money doesn’t matter, Amanda’s money doesn’t count, it has to be Alicia’s money that has to pay this bill. And so that’s silly basically. And it shouldn’t be the case because we’re talking about real money that’s changing hands. And so this is trying to reform that so that any money that you are using to pay for your copay, whether it comes from you, whether it comes from Amanda, whether it comes from an insurance, the pharmaceutical company. All of that goes towards that you’re deductible and towards your copay. So that’s really when we’re working on, we’re also working on some PBM reform and also some non medical switching bills. And then also health course health, of course, health disparities is another one that we continue to work on. The other one we’re looking at is a bill for prior authorizations and Medicare advantage plans specifically. So there’s like some specific issues that run it, that we ran into with some of the Medicare plans because they’re not Commercial insurance. And so we’re working on a specific bill there. So, but again, it’s really all of our advocacy issues tend to focus around equity and access and trying to make sure that patients are really getting what they need. at this, the affordable care acted a lot to really be able to improve, the prospects for people living with chronic illnesses and to try to make things more equitable. But there’s definitely things that we’ve seen that have come out of it, that you still have to piecemeal the solutions around. And so we’re continuing to work on those. And so yeah. This is just the some of the pieces, but I know this is all very common for a lot of other disease based groups as well. These are issues that we’ve all been working on. And so I’m frankly shocked that we’re still having to work on some of them, but we will continue to put our voices towards this as well. Because, this These things need to change the legislators need to hear the reality of what this looks like for patients. And so we want to bring this patient voices to the hill and we’ve been bringing a health care provider with us as well. A pediatric gastroenterologist is joining us who treats kids living with inflammatory bowel disease. And he himself has inflammatory bowel disease. So we’ll be able to have that extra lens on top of it of a healthcare provider. That’s able to really talk about his own experiences with the experiences that he’s had, trying to treat children with these diseases as well. So I’m excited to bring this group to Capitol Hill. It’s a really dynamic group and we have some really impactful stories to be able to share. And so I think it’s going to be a really great way for us to, help these people get their stories out, but also get, get some education to the legislators.

Amanda Brummitt: Yes, well, we hope it’s a very successful week and I love your organization is actually putting patient names and patient stories to it. Because I think sometimes when these legislators are hearing from lobbyists, and they get all this information about a bill, it may look fine on paper, but then when you attach a human being to it, but their story and the disease that they’re living with, I think it really changes the dynamic and the narrative. So thank you. I know that takes a lot of time. To do all that and I appreciate that you guys do it.

Alicia Barron: It does, but I agree with you because I that’s actually one of the reasons I went to graduate school in the first place is, I had an undergraduate degree in psychology was working within a system and and what I was seeing is the disconnect between the legislation that was coming down to the policies and really what that looked like in reality, and it was incredibly frustrating because as a direct practitioner, I didn’t have as much say on it. So when I went back to grad school, that’s one of the reasons why I did a concentration in political social work was because of that real. Disconnect that I saw and that you need people that understand the realities of, what these policies look like, what the legislation looks like and how it’s being delivered directly to the people to be able to go back up into the, to the legislature and say, Hey, this is not working. And this is why, and this is how this could be different. And, there’s only a handful of social workers that are actual legislators. And so sometimes I feel like that. they don’t necessarily understand where it comes from. It’s a lot of the legislators tend to be, lawyers and, that’s all fine and well, don’t get me wrong. Lawyers are great, but those are not the people that are working directly with people living with chronic illnesses or people who are homeless or some of these other policies that we’re looking at. And so, you need, the perspective. So you need the constituents to come to the table and say, This is what this looks like. You need, people that are actually practicing in the community to be able to say, this is what needs to change.

Amanda Brummitt: Well, and I assume that you guys have had much success in the past with advocacy. I’d love to hear a patient success story.

Alicia Barron: Yes. definitely again, being younger, I’m hoping to, we’ll make a bigger splash in the advocacy, like macro space at some point, but yes, there is a really beautiful story on our website and we actually have several patient stories on our website. We have Beautifully done professional videos. And I think the one that really, probably is our biggest success is, there’s a wonderful woman named Regina. She’s a mom of four teenagers, and she has, she’s living with lupus and multiple sclerosis. And she came to the organization because she, was struggling with her insurance company and, they were asking her to do some steps before she could really get to the medication. And so, she was able to connect with one of our staff members, and that staff member was able to help her advocate with her insurance company to be able to really resolve that problem. And so, that was, it’s a one on one kind of case of how we help somebody, but it was really impactful for her. And, as somebody who had four teenagers and is a mom and is, trying to be out there living her life. This is living with true chronic illnesses. This was really, challenging for her. And so just having, an extra hand to be able to help her through that process, I think is, was enough. could she resolve it on her own? Probably she very much could have, but it’s nice to have that extra set of hands and eyes to be able to make sure that you’re crossing all your T’s and dotting all your I’s and really asking for what you need in a way that they’re going to respond to. And so Regina’s story is one of several really impactful ones, but I definitely would. Recommend people go to our website and check out these patient stories because they really highlight some of these advocacy issues in a way that I think people will find really illustrative, sure, of the types of problems that our folks can run into. So, definitely go to our website and check those out. I think they’re, one of the most beautiful things that we do is really giving people the chance to share their story and really. putting their story forward and putting them forward as the true expert that they are in their diseases.

Amanda Brummitt: Yeah. And

Alicia Barron: what is that

Amanda Brummitt: URL?

Alicia Barron: Sure. It’s infusionaccessfoundation.org. We’ve just changed our website a couple of weeks ago. and so you can find us at infusionaccessfoundation. org.

Amanda Brummitt: Perfect. Yeah. Well, thank you for your help with Regina. I feel like living with two chronic illnesses and four teenagers is a lot. Picking something off her plate sounds like it needs to happen.

Alicia Barron: definitely for teenagers alone seems like a lot of work to me. So having to do any sort of insurance paperwork on top of that is It’s just, I can’t even fathom, so happy to help

Amanda Brummitt: for sure. Well, I noticed that before you were executive director at the infusion access foundation, that you were the director of patient empowerment. And, it’s one of my favorite topics. I love patient empowerment. Can you share with us any pearls of wisdom about what we can do as infusion center owners and operators to empower patients?

Alicia Barron: Yeah, that was by far my favorite title I think I’ve ever had. so I’m sad to give it up to be honest, but I agree with you, patient empowerment is such a fun thing to do. just because again, like I just said, nobody knows your body better than you. You are the expert in your disease. You’re the expert in your specific disease, in fact, and your body. And so. You are the best person to be able to tell your story and to be able to affect change and to really help raise awareness about what you’re going through and about these diseases. And so it’s not about me telling people’s stories. of course I’m always happy to do that. And I definitely use the stories of the patients that we encounter as I’m talking to legislators or policymakers, but it doesn’t mean this, it doesn’t mean as much unless it’s coming from really the person. And so we. Really feel strongly that we want to be able to try to put patient voices and patient stories forward as much as possible. That’s why we did these videos because of, not every day. I can have Regina come with me. She is actually coming today on the hill, but Regina can’t come with me everywhere. And so we definitely want to be able to say, hey, check out Regina story. This is something that’s really, needed to change and as a policy that needs to change. And Regina is going to be able to tell you why. And I can come up with stories, I can tell you facts and figures all day long, but it just doesn’t mean the same as much as when the patients are really telling their stories and saying, this is the human face of, how this looks. Stories are what sell essentially, for lack of a better word in this case, but stories are what is going to keep people interested in this issue. Stories are going to be what is going to be the thing that pushes these different issues forward. And so the more that we can help parent patients tell their stories, the more that we can help care providers tell the stories of their, family members that they’re helping. the more that we’re going to be able to illustrate why these types of medications can be life changing and why some of these policies are really detrimental to the health and well being of people and quality of life and why we need to change things. And so I think, that’s a big aspect of patient empowerment is just helping them share their stories. But also the other part of it is that this system is so incredibly complicated that there’s an element of patient empowerment. That’s really just education around how you navigate this incredibly complicated health care system. it is so challenging for any person to deal with the health insurance system, myself included, but you layer on a chronic illness, especially one that’s not controlled. And that adds a layer of just exhaustion and confusion and discouragement and overwhelm that just layers on top of all of it and makes it an even worse prospect. And so the more that we can break this down into bite sized pieces so that people feel like they really have the tools to be able to. Understand what’s being asked of them or understand the paperwork that’s being presented to them or understanding how they navigate the system, the easier it’s going to be for them. The more manageable it’s going to seem. It is incredibly overwhelming to live with a chronic illness and to navigate all these different providers and all these different tests and this huge financial burden. And so if we can add a, add something in that at least makes that a little bit easier, I think that’s going to make somebody else feel more in control of the situation. And that can make you feel really empowered. And so I think there’s, ways for us to all get involved in that. And I think, especially infusion centers are a key piece of that. You have staff that is very well versed in insurance. I know you do because you have to hire them. Unfortunately. There are great people that can help educate your patients on, these are the things that I’m seeing in the bills that I’m getting or like how I’m interacting with your insurance company so that patient can take that knowledge and be able to go advocate for themselves if necessary, maybe when they’re not in the space or it’s something to not to do with their infusion. You’ve helped them understand their bills. your infusion nurses are a fantastic source of information that can be helping patients. They’re standing there with a patient. they’re spending hours with a patient, being able to interact with them. That’s a great opportunity for them to educate on the medication, educate on the disease, provide resources, ask them what else is going on in their lives. Perhaps even recommend. Additional services that might be really beneficial to them, like dietitians or mental health or other types of, health conditions that they might be struggling with. So you have a real open door to be able to really impact this person’s quality of life because of the amount of time that you spend with these patients in your infusion center and the number of people within your infusion center that really touched them and touched their lives. And so I think it’s a really unique position to be in. And I think it’s, It allows you to become a real partner to that patient and not just another service that they go to, but to really become their friends and their partners and to be able to be really, helpful. And so I think it’s really, it’s beautiful. it’s really beautiful opportunity for you to, really help another patient, really get that, get what they need.

Amanda Brummitt: Yeah, that makes a lot of sense. And as we’re having those interactions, how can our teams plug our patients into your resources? how does that work?

Alicia Barron: Yeah, there’s a couple of ways. so obviously go to the website. Of course, that’s the best place to find all of our resources. And the very first thing when you go to our website, there’s going to be a pop up. Don’t click the X right away. Don’t do it. I know it’s going to be your inclination, but that is a place for you to get signed up for our newsletter. And so we have a monthly newsletter that goes out that talks a little bit about what we’re doing, talks about our advocacy issues. highlights patient stories. So it’s a nice way to get to know us and get to know some of, what we’re involved in and then certainly continue to explore our website. And of course, follow our social media. Those are great ways to really understand what’s happening. We have, LinkedIn, we have Twitter, we have Facebook, we have Instagram, and we have a TikTok page that’s just getting started, but it’s something that we’re really going to be having some fun with. The other thing that we, a partnership that we’ve started with NICA and many of the NICA members is a campaign called share your chair. And so that is a way for patients to be able to take a selfie, tag the infusion access foundation, tag their infusion centers, and use the hashtag share your chair as a way to raise awareness that I’m somebody who uses infusions. And this is my really great, fantastic infusion center. And so I want to be able to, do something to highlight that this is something that I do in my life. In addition to that, part of that is also we have a campaign called what’s in your bag. So this is a way for our patients to really show what are the things that you pack for your infusions so that other patients can really learn on like what you know what are the snacks that you bring and the type of blanket that you love or what are the things that you really need. can’t live without when you’re going to go and spend some time at your infusion center. And so that’s a really fun one that we’ve been doing as a way to just highlight, some fun part of this and, what can be tips and tools you can give to other patients. And so those are just some ways to interact with the infusion access foundation. Of course, getting involved in the advocacy issues with us. We want you to take action with us. A lot of times we’ll have like a, sign on to this, sign this letter and send it to your legislator type of bills and activities. And certainly that’s another way that like getting patients to come to us, to be able to, do that. And also to hopefully share their stories with us is another way for us to really work with patients. Cause we. Again, we want to make sure we’re highlighting patient stories. So if you have a patient that has a really impactful story, has had to struggle with insurance in some way, we want to be able to highlight what they’ve done. We want to, highlight their success and hopefully have them help share with their patients, with other patients, what they’ve done that was really successful too. And it’s not about us getting involved all the time. Even just saying, Hey, here’s Amanda and Amanda really had to work to get her insurance to change things, but she can give you some ideas of how she did that. I had a really great patient. I talked to that. We are hoping to get her. She’s been a little busy. She got engaged. There’s been lots of stuff happening, but, I had a really long conversation with what with her about what she did to try to get her insurance company to not switch her from Remicade To a biosimilar. She was very against this. Biosimilars are incredibly safe. We know this, but this was really just not the choice that she wanted to make. And so, she went through a number of different steps in order to get her insurance company to agree to keep her on the originator product and not switch her to the biosimilar. And so, I talked to her about like, what did she do and how might other patients do what, some of the things she did. Some of it was, like getting on Twitter and calling her to her insurance company. sometimes that works. And so, but just, being able to take what other patients have done and turn that into almost like a checklist of here’s what other patients can try. It might not work for you, but it’s something you can try that we know one of our patients has worked on. So we’re, always love, we love to hear stories like that. We want to be able to highlight people’s, successes.

Amanda Brummitt: Okay. Yeah. So I’m hearing lots of proactive ways that they can get their patients plugged in with you guys.

Alicia Barron: If

Amanda Brummitt: they have a patient with a specific need, what’s the avenue. Then

Alicia Barron: there is a form on our website of, I need help basically. So people can go in and they can click on this, like Google form. And it sends us an email saying like, and we’ll ask you, is it like an access issue? What is it? So it’ll walk you through some steps to be able to get that person to us. And then that comes to all of us, every single patient. Three of the whole three staff members I get these emails. we will get them and we will help that patient as much as we possibly can to try to get the situation resolved. And depending if they also include the information for the infusion center, that’s always very helpful too, because sometimes we will then reach back out to the infusion center to say, how do we work together on this specific issue? Infusion centers are also welcome to fill out that form and email us as well. If there’s something that you think that we can help with, you can, that we might be able to step in and help with, feel free to reach us, reach out to us, reach out to us directly, because we are able to do a couple of different things too. So we can work with either side, the patient and, or the infusion center, as long as there’s, of course, at some point, permission gained for To make sure that we’re talking about a patient

Amanda Brummitt: totally makes sense. And then what if infusion centers want to support infusion access foundation? I heard you say they can contact legislators when there are advocacy issues. Are there other ways that they can support you guys?

Alicia Barron: For sure. definitely getting involved with us. you sign up for our newsletters, you can get the newsletter too. It’s information that’s going to be helpful for you. So that’s definitely a way for people to get involved with us. we are looking to make sure that we have these contacts and we have these really strong relationships with the infusion centers as well. some folks we know because of our interactions with them on the advisory committee, or some of us, like some of our board members are even people that own and operate infusion centers as well. So we definitely have some connections. Some existing relationships with some infusion centers, but we want to get to know you and we want to be able to get to know your staff. we’ve had some really fantastic interactions with your staff that really interact like on the sort of billing side of the thing, or even on, the patient care side of the world so that we can really figure out, how, we can help each other and how we can make sure that we’re really hearing the needs of the patient. that’s really key for us is really, staying tuned in. to what is really on the ground for these patients that they really need help with. Certainly there’s ways to get involved with the Infusion Access Foundation financially as well. As you can imagine, we’re a nonprofit organization, so we’re always looking for partners in that space as well. And if you’re going to be at the NICA conference, one way that you could help support the Infusion Access Foundation is we are having our very first special event called Toast Together for Treatment. It’s a dinner that’s going to be happening the night before the NICA conference starts. The NICA conference starts on the 23rd, June 23rd, and our event is on the evening of June 22nd. And so it’s, a cocktail dinner. we’re going to have some fun. We’re going to raise some money. We’re going to be auctioning off some very cool things. and the silent auction, we’re not doing a live auction, but silent auction. So you can, Lazy Boy has been generous enough to donate basically a whole infusion chair. we have. Art that’s been done by patients who utilize infusions that you can hang up in your infusion centers, have something that patients can look at by another patient that is an artist. We also have some jewelry that’s been donated. That’s beautiful from Amy Holton Designs in Austin, local Austin artisan. And a number of different things to it and actually very generous. We infuse and our toolkit have both made auction items that they’re donating to us as well. So you have a chance to win some very cool things if you get involved in the silent auction. So it’s going to be a fun event. We’re going to have dinner. We’re going to have drinks. We’re going to have some entertainment. We’re going to have a photo booth. It’ll be a lot of fun, nice way to kick off the conference and also support the infusion access foundation.

Amanda Brummitt: Yeah, sounds like a great event.

Alicia Barron: it’ll be fun. It’ll be fun. Yeah.

Amanda Brummitt: Well, as we start to wrap up, I’ve got two last questions for you. The first is what are you most excited about right now in the infusion industry?

Alicia Barron: Gosh, that is a really interesting question because there’s so much that’s happening. this space, that’s one of the reasons why this, job, when I was looking for a new position was so appealing is because there is so much that’s happening and so much that’s coming down the pipeline as it relates to medications that are new and exciting and innovative to treat these existing chronic illnesses. And even some coming down that are able to treat, more rare diseases. And that’s. Always so exciting to me to think that there are even more treatment options and more effective treatment options coming for people who are living with these diseases. similar to chemotherapy is becoming much more targeted and, there are ways to really treat cancers that are just a lot more effective for that specific. Tumor or the specific type of cancer. We see that happening in the chronic illness space as well. And that’s always really exciting to me. the other one that I really am looking forward to is we have this treat these treatment options coming into spaces that they never existed before. So thyroid eye disease is a great example of that. Before it was really steroids and surgery and kind of that was your option. And it wasn’t, there wasn’t really anything else in that space. And now we have a treatment option that is able to be used. It’s an infusion that is able to really help bring down the inflammation and swelling and, for these people that are suffering from this specific illness. And so, and it’s really life changing for them, this is really impactful and to avoid surgery is huge. Nobody wants to have surgery if they don’t have to, and so that’s really exciting. The other one that’s coming down is we have a number of different treatment options that are coming for Alzheimer’s disease and early onset on dementia, and that is also just so heartening to hear that because, dementia is just so heartbreaking to have to deal with as a family and such a. such a hard disease diagnosis to get. And so to know that you have an option that’s going to be coming out soon, that’s really going to be able to allow you to have more continued memory for longer and better quality of life for longer, I think is just really exciting and so necessary. And Again, so heartening to really hear. So those are the ones that I’m in particular, like really excited about because they did not have an option before that was really well, in one case, not really any options, but the other one, just not a really great option, and so to have something that really allows people to have much better quality of life and to have it delivered in this way just is so exciting to me. So I think we’ve got some real exciting times in this space and for these different types of diseases.

Amanda Brummitt: Yeah, that’s all sound really hopeful. So if you had just one last piece of advice for our listeners, what would that be?

Alicia Barron: it’s funny you ask that question, because that’s the last question I ask in my podcast as well. but I, thought about this, because the advice that I have for infusion centers is, and you’ll hear more about this. If you go to, there’s a conference session that’s going to be done by Matt Phillips and Amy McGean’s, and they are using data that they. Collected for us, the infusion access foundation, we went through the whole process of getting patient data, patient feedback and doing a landscape analysis and put this all together to really figure out how do we position ourselves moving forward. It was fantastic. But 1 thing that came out of those that I think is a piece of advice. I’m going to give ahead of time. So this is your sneak peek is that, Going to an infusion center and taking this on is an intimidating process for patients, not knowing what to expect. You don’t know what the parking’s like, all these different things that factor into really your comfort going into an infusion center. So I want to pair that information with our share your chair campaign. To give your piece of advice is to take some of your patients that you have fantastic relationships. I know you see these people every three weeks, every six weeks, whatever it is, and turn that patient into a patient advocate for you and have them turn on their video recorders and do a video. Maybe it’s a tick tock. Maybe it’s an Instagram reel of them walking into your office with permission from your staff and showing their experience of going to the infusion center and. Sitting in their chair and what it’s like for them to really interact with your staff and really have that experience so that they can post it tagging share your chair, which would be great infusion access foundation and your infusion center as a way to educate other people that may be looking at your infusion center as an option for them so that they know what to expect. They know what it looks like inside your center. They know what snacks you have. They know what blankets you use. They know what the parking is like outside. So turn your chair. Some of your really fantastic patients into your advocates and use that as a way to educate other patients on what to expect when they’re getting infusion. So that’s my piece of advice. I don’t know if that’s really the piece of advice you want from me, but I think it’s a really cool way for you to get the word out about your infusion centers and also to educate people so that they know what to expect when they’re walking in the door. And you can take that intimidation, at least some of that intimidation out of the factors there.

Amanda Brummitt: Yeah, I think that’s great advice, Alicia. I think we often forget that we deliver a service that nobody wants. Nobody wants to come see us. They’re scared. They’re probably in pain. There’s so many things that are not within their control. And by sharing that patient story, it makes it seem more comfortable. It makes it less scary. You can then see yourself in that patient’s shoes. And I love it. I think it’s great advice. So.

Alicia Barron: I know how much you guys all have such amazing staff that is so welcoming and so warm and so knowledgeable. This is a great way to highlight all of the work that they do too, because, they, really make that experience what it is for the patients and they help make people feel at home. And so if you can highlight some of those folks and have people be able to see the smiling, friendly face that they’re going to see when they walk in the door, I think that the more that it’s going to be an invitation for them to come and work with you, because, that’s, like you said, it’s, It can be really difficult for folks. So that’s, my advice.

Amanda Brummitt: Perfect. I love it. Well, Alicia, thank you for all your work that you do at Infusion Access Foundation and thanks for your time today.

Alicia Barron: Thanks so much, Amanda. It was a pleasure.

Amanda Brummitt: Alicia shared so much great information about advocacy for patients. Health equity, how we can empower patients and how to use the share your chair campaign to make our infusion centers more approachable and patient friendly. Speaking of being patient friendly, if you aren’t familiar with the WeInfuse software platform and RxToolkit’s web based resources, I encourage you to schedule a test drive. They can save you time and money in your practice while making infusion safer for patients and for caregivers. My name is Amanda Brummett and we’ll catch you in the next episode.

Guest Speakers:

Alicia Barron, LGSW is a social worker with a rich background in healthcare, non-profits, advocacy, and even podcasting about Inflammatory Bowel Disease. She’s currently the Executive Director for Infusion Access Foundation.