Empowering TB Patients through Technology: The SureAdhere Impact

This transcript was generated by AI and may contain typos and inaccuracies.

Amie Vaccaro, Senior Director of Marketing at Dimagi and your co-host, along with Jonathan Jackson, Dimagi's CEO and co-founder. So far on this podcast, we've featured conversations with people across the digital health ecosystem. International, non-governmental organizations, Ministry of Health officials, community health workers, journalists, and the public health community. We've also shared a conversation with a number of people who are working on the digital health ecosystem.

But we haven't had any conversations with people receiving services provided through digital health tools. Until today. Today, Jonathan Jackson and Dr. Kelly Collins, Dimagi's Director of Digital Adherence, speak with Chris Buri, a tuberculosis survivor and advocate. Diberculous remains a significant public health concern in the United States, with an estimated 8,300 cases reported in 2022, according to the CDC, which is up from over 7,800 cases reported in 2021. Yet it often goes unnoticed due to a lack of awareness, misconceptions, and stigma surrounding TB.

This leads to delayed diagnosis and inadequate treatment. Efforts to raise awareness about TB are crucial in addressing this public health challenge and ensuring that patients receive the care and support they need. Chris's personal experience with TB has inspired him to become an advocate for TB patients. He understands the challenges that patients face during their treatment and the impact on daily life. During his treatment, Chris found the use of video directly observed therapy or VDOT, as you'll hear it mentioned in this episode, to be helpful as it allowed him to take his medication while still maintaining his daily activities.

He's now advocating for the wider use of VDOT as a tool to improve treatment adherence and patient outcomes. Chris's advocacy efforts are not only aimed at increasing awareness about TB, but also at improving the lives of those affected by TB. Enjoy. Thank you so much for being here with us today, Chris. Amazing background. And I'm also here with my colleague, Kelly Collins, who's head of our digital adherence division and an expert in TB herself. We're pleased to have Chris with us and learning more about your background and your journey with TB.

So to start us off, walk us through the beginning of your TB journey. How did you first find out that you had TB? Well, about seven weeks after some serious back surgery, my surgeon called and he said, Chris, you need to sit down. I had some bad news. We were puzzled because I had significant and continuing pain, which should have long been eased in the seven weeks. And so after that cautionary note, he came right out and said, you have contracted TB. The method that it was you contracted by was during the back surgery procedure.

It was standard procedure to insert a cadaver bone next to the S1L5 joint in my back lumbar region, which the cadaver bone was to spur the fusion. But this batch was infected with TB from the donor. This was a very unique case. But with that being said, all TB cases are unique. And the way my neurosurgeon found out about it was that during a period of about six weeks, my surgery was April 14th of 2021. So March of 2021 through May of 2021, 110 patients were contaminated with this TB contaminated cadaver bone.

Cases started to pop up on the East Coast. And when cases of TB are found, the CDC is notified. And so the CDC saw that there were clusters that were in Delaware, in the Midwest. So they started investigating it. Let's put this in context, too. This was in the middle of COVID. So the CDC not only had the COVID issues, but now it had this pretty unique situation of 110 people being contaminated by TB. They quickly found out what the source was in a matter of days and started contacting all the public health officials on a state level.

The state went and was able to contact the register of who received the cadaver bone. So it went from the CDC to the state to, in my case, Denver Public Health. And I believe there were two cases here in Denver. And then my neurosurgeon was notified and he notified me the next morning. So I was slotted in to see Denver Department of Public Health, TB and infectious disease clinic the following day. The CDC had mandated that we be all treated as active TB patients. In my particular case, I did not have active TB.

I had what they call non pulmonary TB. So it was not contagious. It was encapsulated in the bone in my lumbar region. And the CDC said, don't even test for TB. Just start them on the 12 month regimen. They did the cursory check in of me. So I had my checks, my chest X-rayed and vision test, blood test. That's how it happened. That's quite the initial story. So you get told by your doctor to sit down. Like what's the first thing that goes through your head when he informs you know, your cadaver bone was infected with TB.

I call it the lament of Job. In biblical story, his famous quote was, why me Lord? Putting it in context, I had just come off of about a year of significant back pain. It took a long time to get in to see doctors because of COVID. It took a long time to schedule the surgery. By the time I went into surgery, I was in a walker. And for me, I was 70 years old at the time. And I took a lot of pride in my fitness level and my activity level. You know, I'm an avid cyclist, a skier.

And my immediate thought was, why? And you never want to do that because it's an unanswerable question. So I just kind of reset what my rehab was going to look like. I felt pretty confident that I was in good hands. I felt very confident that my caregivers were treating each other as colleagues. Dr. Rubin initially said, I'm afraid I'm going to have to go in and remove the hardware. Another surgery. But first he said, I'm going to talk to Michelle Haas. After talking to Dr. Haas, my neurosurgeon said, hey, let's try this out.

I think it's the best route to go. So I've been very lucky so many different ways. And I've come through this with an overriding sense of gratitude. I had caregivers who earned my trust. I had caregivers who talked to one another and put me on the right program. Both Julie and I were retired. I haven't forbid if I was working at the time because, you know, for, I would say, six to eight months, it was during COVID. I had back surgery. I had TB. So I just didn't have enough emotional bandwidth for all of that.

It was overwhelming. My mantra was we can get through this. OK. And again, luck would have it that I wasn't isolated, that I was diagnosed quickly. And because so many TB patients go undiagnosed or misdiagnosed in some cases for years. Yeah, I think that's a huge challenge in case finding, making sure people have access to treatment. And as you are very fortunate to have providers that earned your trust and, you know, we've both Kelly and I've had the pleasure of working with Colorado's Department of Public Health and Denver's Department of Public Health and just amazing dedicated public health professionals there.

That was a notoriously difficult treatment course. And so when you were first notified of this and what that was going to look like and the side effects, how do they educate you on this? How do they share kind of the journey that you were about to be on at that point in time? Yeah, a good question. Well, it's a blur. There was just so much coming at us. That the presentation by Dr. Haas and her staff was very matter of fact. They expanded on the whole process that the CDC had gone through, which, again, you're contrasting this with what was going on in the media at the time that the CDC had no idea what they were doing.

Here is a situation where the science worked, OK? We felt reassured, but there was a certain amount of resignation of what we have to do. This is what we have to go through. Your questions only come afterwards. The information coming at you is like trying to take a drink of water out of a fire hydrant. You're in shock. They'd been in a process of continuing pain for going on eight weeks now. Here was a whole new challenge put in front of us. Yeah. Chris, I want to kind of hit on a point that you made.

You said that you were really drinking from a fire hose in terms of the information that the health department was giving you. You're trying to deal with your back pain and then also at the same time navigating a really challenging disease. It sounds like the health department gave you really wonderful resources that helped move you into your TB treatment. Tell me a little bit more about some of those educational resources that you received from the health department or did you go out and find more information about TB on your own?

Because it's not a common disease in the US and I think oftentimes I've heard from other patients that they didn't know anything about TB before being diagnosed with it. So wondering how you navigated learning about the disease and learning the importance of staying on treatment, et cetera. Well again, you asked me what my reaction was when I was told that I had TB. I kind of thought, isn't TB eradicated? Because it's totally off our radar screen and certainly for someone of my generation here I am, a 70 year old white male who is not exposed to a situation where there's TB in my sphere.

So it was a real shock. And then also like a little bit of curiosity. You know, I have been through enough surgeries where I know that part of recovery, the responsibility is on me. It's not a passive role. So you could get caught going down a rabbit hole by getting online and researching and trying to diagnose your symptoms and your issues. I will tell you that the staff over at the Denver Department of Public Health, they were so professional. I mean, the ease and with the thoroughness, I walked out of there kind of going, they know what they're doing here.

My role is to be proactive. And I get back to this whole caregivers need to earn your trust. That's the expectation that I go into situations with. Tell me a little bit about when you were diagnosed and you got all this great information from your health department. Denver Health was really supportive and sort of bring you onto this care journey. And it sounds like you did a lot of research on your own and started asking great questions. Tell me a little bit about your journey towards being observed taking your medications, because I know that's one thing that often comes up with TB patients that I've spoken to in the past that this concept of having to be watched taking your medicine every single day is difficult to come to terms with at first.

And many haven't even heard of the disease, much less need to understand that they're going to be observed taking their medications. Tell me a little bit about that process because most of the public health nurses I know are so wonderful about working with patients through that process. I'd love to hear how that looked for you. Well, Denver Health, they were spot on in laying out what the process was going to look like. You can hear what the side effects are going to be, but it was the standard.

I was put on a 12 month regime, which is a misnomer because it's not 12 months. It's 365 days. So when I started in June, I didn't end in June of the next year. I had to go into July because they had to take me off of the rifabutin and put me on Fanditol and my liver count spiked and it was crazy. The in care people who came were great. They showed up when they said they were going to. Not that anybody was going anywhere. I was retired. It was coded and BVOT SureAdhere gave me freedom.

It gave me my schedule back. It gave me some some ownership of my day who'd ever been on a zoom before. And you know, everybody's on zoom. And now, you know, within six months, I'm on SureAdhere, which it was very easy to use download the app, no problem. As long as I had Wi-Fi connection, it was great. You know, towards the end of my 365 days, I was traveling in the Colombian Andes. And here I am using SureAdhere to BVOT my drug intake. So I thought that was a little interesting.

Did it work? Back in the hills. Were you able to get Internet connection? Yeah, we were staying in a large coffee plantation up in the mountains of Colombia. And so this was about 10 months after my surgery. There was only one part of the veranda that had Internet connection. So here I am in the middle of the jungle. And Colombia is a fascinating place. It's the most biodiverse country in the world. And we were at a place where they were feeding all these tropical birds that they come to the veranda.

And here I am doing my via BVOT in the middle of Colombia. So there it gets back to that freedom piece. Now I have talked to other TB patients. And in fact, one of them was part of the group that of my group that was infected. And he bristled at having to do BVOT because he was I don't trust them with keeping privacy information. And I never thought of that. I just thought, isn't this wonderful to use technology? And yeah, so kind of where I went. That's a fantastic point, Chris.

Privacy considerations surrounding the adoption of BVOT for TB treatment support has been a critical part of our discussions with public health programs when we've worked to scale BVOT in the past decade. Our team has been really dedicated to ensuring that our platform adheres to international security standards for storing private health information like HIPAA in the U.S. and GDPR in Europe. But even with these high standards for data protection, it doesn't always mean patients will feel comfortable sharing a video of themselves to a technology platform.

So patient education by the provider is key to help individuals understand where their data is going and who will be looking at it. And so I'm really glad that you raised this consideration because it makes the point that not everyone will feel comfortable using BVOT and that's OK too. I blew right by that. The benefits of it for my freedom and also, I mean, if Denver Health is sending people to my house, OK. Now again, I'm blessed. Denver Health is 15 minutes away. So in order for them to come here, my location gave them a lot of flexibility.

So if those caregivers to do their DOT are having to drive an hour, how is that affecting care of other patients because they're on the road all the time? That's a great point, Chris. And the burden of observing therapy on the patient and that travel time, the burden on the system, what those providers could otherwise be doing. These are some of the reasons why I think having virtual support for this process and as you said, it gives you your time back as a patient, but also gives the provider their time back.

So those limited moments can be dedicated to other patients who may need them. Chris, you mentioned that you started on in-person DOT. Can you talk a little bit about the transition from in-person DOT to moving towards VideoDot? What was the process that Denver Health took to transition you to VideoDot? Did it start at the very beginning of your treatment or did it start sort of mid-treatment? Can you talk to that a little bit? They did DOT for two weeks and then there was a couple of sessions at the end of those two weeks where they watched while I did the DOT.

They were there to help, which it was a little confusing though. So there were a couple of times where I thought I was recording, took all the meds and then realized that I wasn't recording. So if there's kind of a prompt or something where it says recording on the app, that might be helpful. And then it was a really easy transition to go from DOT to VideoDot. Here is what was cumbersome. You should have a chat function on the app. We're linked up to whoever is looking at the video with Denver Department of Public Health because there were times when we did all our communication via text.

So if you could have a chat function on that, I'm not using two different technologies. We have heard similar feedback from other patients and providers using SureAdhere and I'm really glad that you brought this up. As part of our journey to evolve the technology towards a more holistic wraparound virtual care model, we have actually added a chat feature to the platform that will go live later this summer. And our goal is that future TB patients will have the benefit of communicating directly with their provider from within the platform itself.

So really great to hear this feedback and to be able to have a response with new functionality coming out very soon. Chris, I wanted to switch gears for a moment and talk a little bit about your work as a TB advocate. You went through this incredibly stressful experience with your diagnosis and your treatment and you've come out the other side and now you're working as an advocate. And I wanted to hear a bit about your work with We Are TB, how you got involved with them and how you're advocating for individuals affected by TB going forward.

Sure. Well, one of my first reactions when I found out about this and when I found out it was a contamination, I had two goals. One was to get healthy and the next goal was to get even. And I think I mentioned that to my daughter once, who's a registered nurse, and she said, you want to make sure this doesn't happen again. So find out how your story can provide more of a window into what it's like to have TB, what you went through, how you felt about it and advocate for more research, more money and just be there for support.

It's funny because certainly We Are TB gives you the opportunity to talk to TB patients and TB survivors. And that's a self-selected group that we encourage one another. And Kate O'Brien is fantastic. She is just the head of We Are TB. Incredible person. But also having the opportunity to talk to NTCA, boy, the feedback after my presentation was we don't hear enough from patients. So that just was a clarion call to me of, oh, there's something I can do. And sharing my story is good therapy.

I love hearing that you really wanted to start advocating for more money and resources, research funding for tuberculosis. I think that's something that in this fight against TB has been an issue worldwide. TB research and funding and having patient voices really elevated, I think will start helping bring donors to the table. So hopefully your voice can continue to be elevated and keep bringing funding to the table so we can really end this. Yeah. Chris, thank you so much for joining us here today and sharing your story.

It's very powerful. And as you mentioned, in so many different diseases, the voice of the patient can often be lost in a lot of the work that health systems and public health professionals are doing. So it's wonderful for you to come on, share your story. And thank you so much for spending time with us. Well, thank you for all the work you do and how you're using the technology to act as a very effective bridge. Video remote is the way of the future. So everybody's going to have to get used to it.

Thank you so much to Chris for sharing his story with us today. My takeaways for the digital health community listening to this episode. One, caregivers need to earn trust. Technology can't replace a caregiver, but needs to actually help them build that trust over time. Second, digital health tools, like SureAdhere's video directly observed therapy tool, have tremendous potential to give us our freedom and lives back even during challenging periods of time, like a year-long TB treatment course.

And lastly, I heard the importance of caregivers collaborating with each other and coordinating care and the need for technologies like SureAdhere and others to connect to each other to streamline the process. That's our show. Please like, rate, review, subscribe and share this episode if you found it useful. It really helps us grow our impact and write to us at podcast at demande.com with any ideas, comments or feedback. This show is executive produced by myself. Danielle Van Wieck is our producer.

Brianna DeRoose is our editor and cover art is by Sudhanshu Kanth. Thank you.