Tom Rhoads: The patient perspective is an integral part of how we at Spencer Health Solutions approach our work from UX and human factors testing and designing Spencer all the way through our customer interactions. We always look at how the patient evaluates their experience with our system. In this episode of our podcast, we asked chronic pain patient advocate Barby Ingle, founder of the International Pain Foundation, to share her perspective on improving clinical trials. I know you enjoy this episode of “People Always, Patients Sometimes”.
Janet Kennedy (00:37):
Hi, my name’s Janet Kennedy and I’m your host for “People Always, Patients Sometimes”, a production of Spencer Health Solutions. I am really looking forward to my conversation today with Barby Ingle. Barby is a bestselling author, a reality live-streaming personality, she lives with reflex sympathetic dystrophy, Migralepsy, endometriosis, and other pain disorders. Not a surprise. Barby is also a chronic pain educator, a patient advocate, and president of the International Pain Foundation. I am very, very excited to have Barby here today and also because she is an avid user of social media to share her story. Barby, welcome to People Always, Patient Sometimes.
Barby Ingle (01:21):
Thank you so much Janet for having me. I’m so glad to be with your audience today.
Janet Kennedy (01:26):
You know, we talked to a lot of different people in pharma, in health care and clinical research, and I have spoken with some other patients, but I have to say in reading your bio and the things that you’re dealing with, while the title of our podcast is people always patients, sometimes I have to think that sometimes it feels like a flip for you, that it’s really patient. Always people sometimes. Yeah. Well, I think I’m both all the time. Is it a situation where you literally can never not think about what you’re feeling?
Barby Ingle (02:02):
I absolutely have to pay attention. I have to plan and be prepared, and luckily before I was chronically sick, I was already organized, so I definitely used the skills that I learned in cheerleading, including organization and responsibility in dealing with the healthcare challenges that I’m faced with every day. For sure.
Janet Kennedy (02:22):
Now, have your challenges come as a result of your adult life, or is this something you dealt with even as a teen or preteen?
Barby Ingle (02:30):
I was actually pretty healthy growing up and when I was 26 I developed endometriosis. And then at 29, I developed reflex sympathetic dystrophy, RSD for short, and really endometriosis was something I got through really quickly. You know, it was like, Oh, this didn’t work. These shots didn’t work. What’s the next thing? A laparoscopy. Okay. That made my insides very mad and the spread. And then the final thing was a hysterectomy and I was like, take it out. I’m done. I can’t take this. I got past it and I thought if I could pass that I could get through anything. And then I got hit with RSD and secondary conditions after a minor car accident, which triggered it. It’s actually an autoimmune disease, but it was triggered by an automobile accident and that changed my life forever. That eight seconds.
Janet Kennedy (03:26):
Wow. Okay. I’m going to take a moment and really think about that eight seconds. And your life has changed forever. So what does that mean day to day? How are you impacted by RSD?
Barby Ingle (03:38):
So prior to the impact, I was in my vehicle, a small vehicle, and I was hit by a 16 passenger van. I saw the van coming, I saw him in my rearview mirror and I twisted my body and the van impacted my car and I blacked out after that. I went to court and he testified, he said he had never, he didn’t see me and he never took his foot off the gas. So after he hit me, so from that moment I started having burning fire pain. It was in my face, neck, and shoulder area. But it was so overwhelming with my thoughts, with my actions. I was, I went from being a collegiate cheer coach at a division 1A university to, I still was trying to keep coaching, but my coaching suffered, my team suffered.
Barby Ingle (04:26):
We were in the top five in the country rankings for cheerleading. And you know, I really was living my best life and that eight seconds that it took for this accident to happen, everything changed. And I went from well to being bed-bound for the next six months or so. I tried to continue to work and I would go to practice and I at practice would lay down on the floor and have our team doctors taking care of me. Instead of taking care of my student-athletes. I would go back to my office and lock the door and sleep because I was in so much pain, but I also was quite fatigued maybe just from having that much pain. If I turned my head to the right, I would pass out. Just literally everything in my life changed. I was married for 10 years. It’s my first marriage.
Barby Ingle (05:15):
Did not survive the auto accident. I couldn’t explain why they told me I had whiplash, but yet I had this burning fire pain. I started going from doctor to doctor to figure out what was wrong. I went to chiropractors, physical therapy, anything and everything that was suggested. I tried and then what? Oh goodness. Then I ended up over a three year period moving from Washington state down to Arizona per doctor’s instructions. They said I would get better care here. I ended up seeing 43 doctors in a three year period. And finally, that 43rd doctor stopped and he had me bring in, at that time all of my medical records, which took three, three-inch binders. I’m now on binder nine of medical records. And before he even came in to meet me or see me or anything, he went through every single record from all 42 providers before him from all the different specialties.
Barby Ingle (06:12):
And he came in and said, I think I know what’s wrong but I’m not sure and I want to run a test. And I said, well tell me about the test and I’m going to go home and study about it. And that was the first time I advocated for myself instead of just listening to and doing what the doctors told me, I stopped and said, you know, I want to go research on my own. And I and I took a week to research and talk to other patients that had had this procedure and decided to do the test and went in seven days later had the test done and I was tested positive for RSD, which is now known as central pain syndrome.
Janet Kennedy (06:50):
And what, is this a situation where you have to be medicated all the time? Is there a different kind of physical therapy that works for you?
Barby Ingle (06:59):
I’m allergic to Oxycontin so I didn’t know how I would do with other opioid medications for pain. So I also didn’t want to be like out of my mind so much mentally foggy cause I was already mentally foggy from the RSD symptoms. So I tried to do other treatments, but I was on pain medication for a lot of that time. Although I was on a lot lower dose and strength than many of my friends are. I supplemented it with radio frequency ablations as well as nerve box. And I even tried epidural steroid injections. I tried physical therapies. I went through a whole bunch of different, I’ve done three clinical trials, two medications and also a medical device and I still actually am using the medical device that I did throughout the trial and there’s actually a book written and I have another family member who has the same condition as I do and he actually uses the same medical device that I used and we’re both in this book that has come out about the device.
Janet Kennedy (08:11):
You went from literally suffering every day needing multiple physicians, changing your life totally moving to a new area. Finally got a diagnosis. You got some things maybe a little more manageable?
Barby Ingle (08:24):
Yes, so I was in the accident on September 26th, 2002 and I finally started doing all of these treatments and trying all of these options. I ended up in a wheelchair. I went from being face, neck, and shoulder; through surgeries, I didn’t need I had a rib removed. The doctor made a mistake on that and ended up damaging my right lung and just one thing after the next went bad, I ended up in a wheelchair and bed bound to the right side of my body. My hand was curled up, my foot curled up and really just was trying to maintain being alive. In 2009 I finally went through infusion therapy in seven days in ICU infusion. I went in in a wheelchair in seven days later I walked out, I teeter-tottered out cause my legs were quite a bit atrophied and my whole body was.
Barby Ingle (09:18):
But I was able to walk out on my own and I was so proud of that moment. I had to come in and out of remission since December 2009 and I still have a scooter that I use when needed, but I am managing much better now that I have a good group of treatments that are working for me.
Janet Kennedy (09:39):
So help me understand how you made the transition from being focused on your own health to helping other patients deal with their issues.
Barby Ingle (09:50):
I advocate for myself first and then I joined a local support group and realized that I had a lot to offer to the group because of everything I had been through, but I didn’t quite get what I needed out of it. So I reached out to a larger organization for RSD and said, you know, I’d like to be a mentor to mentor other patients.
Barby Ingle (10:15):
And I took on mentoring three patients, one of whom is still to this day, my best friend, and we keep in touch almost daily and it worked out. But I started by mentoring other patients and just being someone that they could talk to and someone that I could talk to and growing that into – I started to get asked to speak at events, at other people’s support groups at different conferences and things that are happening in the pink community at large, not just for my disease specifically. And in sharing my story, it just really opened up a whole new Avenue of reach of people that didn’t know what this is somewhat, you don’t know that you need it until you’re in the midst of it. And sometimes when you get into a situation where you’re challenged, it’s hard to see all the tools that are around you.
Barby Ingle (11:09):
So I kind of found them slowly moving through my own story and I said I have to help other people. No one should go through what I went through.
Janet Kennedy (11:18):
So I’m curious, how do we refer to chronic pain? Is it a disease?
Barby Ingle (11:22):
Well, chronic pain is actually now in the ICD 11 a diagnosis in and of itself. You can be diagnosed with chronic pain as an ICD code and insurance covers different treatments and things that are pertaining to that code. So it actually is a disease in itself or it can be secondary to another condition.
Janet Kennedy (11:41):
Well Barby, tell me about the International Pain Foundation. What is that organization? The International Pain Foundation started back in 2006 and that was just when my advocacy was starting and it was started in my honor by family members, but it soon grew to something that’s much bigger, which at first it was called the power of pain foundation because I believe that pain made me a better person and more patient.
Barby Ingle (12:08):
And that’s the message that I was spreading. My family every year would pick a charity project going into a nursing home or serving food at a homeless shelter that we could do as a family, and that year the family said, look, if Barby had this much trouble there, have to be other patients out there having trouble, so let’s do something that will help them. And it’s grown from just a small family organization in my honor to me actually running it and now it’s an international organization with people from all over the world submitting articles, submitting quilt project pieces and crafts and education and all kinds of awareness opportunities. It really has grown from this little small family idea and project into this global network.
Janet Kennedy (12:59):
Oh, that’s awesome. Because I think that’s what patients have really demonstrated to the industry is that they will find their solutions. They will find their networks, they will join together with peer groups and solve their own problems if you won’t solve them for me.
Barby Ingle (13:17):
Absolutely. Sometimes I wonder and now I work with pharmaceutical companies to help with clinical trials and help people become aware of those clinical trials that are going on. But before it was involved in, I didn’t quite understand the clinical trial process. I would wonder why are they not listening to the patient’s voice? And I think over the last few years the pharmaceutical industry has made a special effort to pay attention to what the patient voices and have patients and caregivers on their advisory boards for a clinical trial. Getting it set up and getting it organized and all the way through to the end when the results are produced or their item medication came to market or I’ve been involved with trials that actually didn’t make it to market, but I’ve seen that whole entire process and been a part of it and was one of those patient voices in that process.
Janet Kennedy (14:13):
Tell me a little bit about your experience as a patient in a clinical trial. You don’t have to name names, but I’m more curious about what did you feel was done well and what do you feel may be missed the mark as far as considering the “patient first” perspective?
Barby Ingle (14:29):
There’s so many things. The biggest, thing is the disparity. Clinical trials should mirror the patients that will be the end-user and so many times clinical trials miss that mark and they want people in their trial who will do well on the medication, but it doesn’t necessarily serve the population. For instance, we know that people that are African American or black will have sickle cell disease more often than somebody who’s white, but less black people will participate in the clinical trials so when they come up with a solution that could be viable for sickle cell, it hasn’t been tried on the actual population. That’s the majority population for that disease or condition. So I think that’s one of the things is the disparity. Also, a lot of people are limited from being a part of the clinical trials because they don’t have transportation or access to the trials themselves.
Barby Ingle (15:33):
They’re usually held in the bigger cities and that has a certain population and income level and education level. So you get less of the smaller town, rural patient population. Being a part of those clinical trials?
Janet Kennedy (15:49):
Well, I think from your experience too, you probably weren’t solo-ambulatory, so you needed someone’s help. So that’s two people.
Barby Ingle (15:58):
Yes. And that’s what I meant by transportation because I have a seizure disorder. My seizures disorder didn’t start until 2014 but I had migraines right after my auto accident, but I wasn’t able to drive for many years because when I twisted my head to the right, I would pass out while to change lanes, you need to be able to look and see what’s next to you. So I didn’t drive a lot. So I do, I rely on my caregiver and now I have a seizure disorder.
Barby Ingle (16:28):
So I drive even less. But if he wasn’t able to take me and have a vehicle to put my scooter in or my wheelchair in, then I wouldn’t be able to go. I did try to take a taxi once to a doctor’s appointment and it was $126 to go less than 20 miles. Wow. And my husband now. I was able to find love in the midst of all of that pain and chaos and he’s the most amazing caregiver ever. He said, you know, I will take off work for $126 like this is ridiculous. Never, ever, ever take a taxi again. We just had to find ways around it and work out a better way, but if you don’t have somebody that can do that or their job doesn’t let them off, then getting to the appointments can be quite a challenge to participate in the clinical trial.
Janet Kennedy (17:20):
Barby, you’re very savvy out there in the wide world, following social media, following the innovations that are happening. Do you see any improvements for patients with all of the digital health technology that’s being developed?
Barby Ingle (17:34):
Absolutely. I think that some of the clinical trials are coming on board and they’re allowing patients to do the trials from home. They’re sending them kits where they can do the monitoring from home and it can work on an app on their phone and report the results to the researchers and or their providers. If the researchers find something, they can report it back to the patient’s provider to get immediate care. So we’re starting to see some of those types of trials come into fruition and I think this year especially telehealth has exploded and hopefully the clinical trial process follows that same path and works in telehealth into their system so that patients that are more rural can get involved in the clinical trial so that the trials can mirror better the types of patients that are the end-user of that product.
Janet Kennedy (18:32):
Well, that is exactly what we hope at Spencer health solutions as well. Our Spencer device allows for medication delivery also allows for patient engagement via asking questions after someone has taken their med delivery and there’s a telehealth feature and can even tie into biometric devices. So there are a lot of options there to hopefully make it easier for in-home clinical trials. Before I go, I want to know a little bit more about the Ken and Barby Show. Tell me what this is. I don’t think I’ve ever spoken to a reality TV star. So I want to know what this program is and how it got started.
Barby Ingle (19:11):
Yes. So I’ve been on multiple television stations, like game show network and TLC and WB, CBS, ABC, NBC. But my husband, Ken and I were “Ken and Barby”, and we participate in the Ken and Barby Show. It is a show that is lighthearted. It covers our adventures together and raises awareness, but not necessarily in an upfront, in your face kind of way. So we talk about different conditions and things that I’m personally going through with my health or Ken as a caregiver, some of the challenges that he’s faced. But it’s also, we found ourselves because of the advocacy work in quite some interesting positions and situations and have been able to meet a lot of great people who have also use their platforms to raise awareness and spread the information that they need about their condition. So we’re very funny together, very interactive with our viewers.
Barby Ingle (20:11):
Sometimes we play games, we give out prizes. We’re on season nine some of our seasons. We’ve had sponsors this season that we’re on right now. We decided to not have a sponsor for this season. It’s just Ken and Barby raw all summer long and we just want to bring positivity into everybody’s life and be cheerleaders of hope – or Ken calls himself a “Care Leader of Hope”. We do that in a lighthearted, fun, positive way and it gets people’s minds off of the pain, but we also have people that don’t have chronic pain of any kind and they’re tuning in and watching and we’re reaching a larger audience than just our silo of patients and their caregivers. So we’re actually planting seeds and we’re hoping that when that person needs the information one day that they will remember some of the topics and things that we brought up during the show.
Janet Kennedy (21:07):
Oh, that sounds great. Well as people know who listened to the podcast, I will have links in the show notes that will take people to not just your social media profiles, but we’ll make sure that we’ve got a link to a couple of your cool blog posts about clinical trials and of course to the Ken and Barby Show.
Barby Ingle (21:24):
Thank you so much.
Janet Kennedy (21:25):
Oh, Barby, thank you so much for being here and I really, really enjoyed having you as a guest on “People Always, Patients Sometimes”, and really look forward to meeting you in real life when we get back into face to face situations.
Barby Ingle (21:41):
Awesome. I can’t wait to meet you as well. Thank you so much, Janet. This has been a great time.