Rare Disease

A Patient’s Voice:
A Dialogue on the Chronic Pain of a Rare Disease Patient

by Lanmark360


February 20, 2018

Fighting one rare disease is difficult, but fighting multiple rare diseases and managing to stay positive is quite a feat. I had the pleasure of talking with Barby Ingle who is not only a rare disease patient, but a powerful patient advocate for those with chronic pain and President of the International Pain Foundation. Her story and never-give-up attitude was inspiring.

Barby also shared insightful perspective on a range of topics including alternative ways healthcare marketers can provide support to patients and the importance of equipping patients with tools to take control of their care and quality of life.

Howard: Today we’re going to talk to Barby Ingle. Barby Ingle is a patient that’s battling not one, but several rare diseases. She’s kind enough to share her personal stories with us as well as her insight on what we as healthcare marketers can do better to serve the patient community. Hi Barby, this is Howard Klein, Lanmark360, thank you so much for joining us today.

Barby: Hi Howard, I’m so excited to be here and share my insights. This is a great opportunity, so thank you for having me.

Howard: My pleasure. Barby we’re really enthusiastic about hearing your stories because rare disease is something that our agency does a fair amount of work within and we understand the importance of the patient voice. In your case, I understand it’s not just one rare disease that you’re battling, but several?

Barby: Yeah actually I do have several and some of them are secondary to my main condition which is reflex sympathetic dystrophy, also known as central pain syndrome.

Howard: So can you just talk a little bit about your initial diagnosis and then the journey that you took after learning of your first initial diagnosis?

Barby: My initial diagnosis with a chronic disease was endometriosis and they kind of knew right away but I went through a few years of treatments with Lupron shots and a laparoscopy and different medications and then and I ended up having a full hysterectomy and a left nephrectomy and an appendectomy to help all of the symptoms with endometriosis. I thought I had conquered the world and I could take anything on and beat it because I had beaten endometriosis and about two years later I was in a minor car accident and they told me I had whiplash and I’d be better in three or four days and here I am sixteen years later and so that wasn’t the case. I actually developed reflex sympathetic dystrophy. Reflex is anything your body that’s automatic goes haywire. Sympathetic is a nervous system. It feels like someone put lighter fluid on me and caught me on fire and it’s very difficult to put out. And dystrophy is lost muscle and bone and I spend about seven years in a wheelchair.

Howard: What was that turning point that helped you to find the way to cope and find the way to manage and overcome all these obstacles?

Barby: The turning point with my challenges and living with chronic diseases was becoming my own best advocate and what I was doing everything that providers told me to do all of the three years they was taking to get a proper diagnosis and each provider had their own specialty and understanding that just because you’re in front of a provider doesn’t mean that they know everything about every disease. That helped me understand that I have to be my own best advocate and I have to find a team of providers that can take care of all of me and it wasn’t going to be one provider, it was going to be a team of providers and a variety of treatment options that we’re going to address each individual thing that I was dealing with so that I could be the best whole me I could be and until I took control and realized that it wasn’t one doctor it was going to fix everything that was the turning point for me.

Howard: It sounds like essentially you had to assemble this multidisciplinary team of healthcare professionals and specialists but you were serving as the team captain to pull the team together so there was there was no one conduit that pulled all these doctors together except for you.

Barby: Absolutely. I was the conduit. Yes, exactly. I was the conduit that pulled the team together and I stopped relying on everybody else and started relying on myself in getting organized and keeping track of my medical records, keeping track of my medical bills, even learning how to read a medical EOB versus a doctor bill and comparing them, checking my medical records I had one record that said that I was at the emergency room for my left leg and I was actually there for trouble breathing and pain in my right arm. So really learning to read those medical records and understanding that mistakes needed to be corrected and that I was the one that had to take control and take charge of my own care and that even in between providers I was going in that 15 minutes in his office I was thinking that was my care but really it was the self-care in the 30 days in between my appointments that I had to be in control and make sure that I was doing my part and doing my homework otherwise the whole team falls apart and without me being the leader in me taking control of my life and the care that I needed I wasn’t getting the care that I needed until I did that.

Howard: Wow. And during that initial diagnosis prior to the car accident and at that point you were you were feeling good, you thought you were on the on the right track to maintaining a healthy life. What type of support if any was provided to you when you first learned of your diagnosis?

Barby: There really wasn’t any help, it was just this is your diagnosis and I went home and Googled it. I think the doctor one the providers won’t have enough time for us in their in their appointments and two when he told me it had been three years of the wrong treatment with no diagnosis so I was a little skeptical and said okay let me go research and find out about it. Communicating and learning how to communicate and not just going into the provider’s office and saying I hurt everywhere, fix me, but being specific and saying my pain is burning, stabbing, shooting, electric, bone pain, whatever it was and I had different types of pains in different parts of my body. Learning those adjectives and learning how to communicate was extremely important I wasn’t communicating and my provider didn’t have the time to teach me how to communicate.

Howard: Now in today’s time is there is there any resources, support or education to help patients better communicate with healthcare providers?

Barby: Compared to where I was back in the early 2000s to now there’s huge strides in resources and outreach for patients and ways to help patients learn how to communicate with their providers but it’s not where it needs to be yet. I think we need to reach people before they even develop a chronic disease and that’s something that’s missing in society, is that we aren’t taught how to prevent how to overcome challenges so that we get through them faster and easier so that it doesn’t get so bad. It’s just isn’t fully at the level it should be yet.

Howard: In your opinion, whose responsibility is it to teach and raise that awareness?

Barby: In my opinion, it’s the responsibility of everybody at the table. It’s pharmaceutical companies, it’s the providers, it’s the patients, it’s our care givers, it’s the government, the insurance companies. I think that everybody plays a role and when you leave one person’s voice out of that role all of the aspects that because it’s so intricate and so many different things have to happen for a patient to end up with proper and timely care. Although the patient has the most responsibility to find the resources, organize them and put them into their life the way that it fits best so that they can get the best care. It’s up to everybody to provide their information in a way that is easy for patients to understand and especially for new patients that don’t understand the system at all and are just going blindly through it stumbling along the way and I’ve lost many, many friends to suicide and it’s typically because of bad communication, lack of access to care, access to proper care and in a timely manner and they give up on the system. Since 2012 I’ve lost at least two friends a month to suicide and the resources are getting better. So there has to be more in place and seeds planted as I say before we developed these chronic diseases or before they get as bad at or as catastrophic as someone wanting to commit suicide.

Howard: As a patient with chronic pain, did that lead to you building friendships with other patients of chronic pain?

Barby: It did. The more that I share my story, the more other people in in the chronic pain community share their stories and I think that’s one of the better aspects of getting through what we go through is that we’re not alone and so I’ve talked to, personally I’ve talked to thousands of patients and am connected to between all of my social media platforms over a hundred thousand patients that have a chronic disease or more than one chronic disease in most cases. What can I do to get the care that I need? A lot of patients don’t even know that there’s prescription medication savings programs whether it’s through a pharmaceutical company or through a nonprofit organization that provides something like that it’s something that we have to be taught and the only way to do that is create friendships and spread it through social media.

Howard: So are the pharmaceutical companies doing a good job of letting the chronic pain community know of different types of patient assistance programs that are available to aid with the costs associated with therapies?

Barby: In my opinion there’s some that do it very well and there’s some that don’t do it at all. They don’t even talk about it might be able to small little thing on their website but it’s not something that’s talked about. I mean we’ve seen over the years commercials about prescription drug assistance but it was geared in my opinion to like an older audience. There is a way but it has to be done more often to get the word out to the wide range of of age groups, the people with chronic pain live with, you know it’s not just an older population as we’re taught growing up it could be anybody at any age so the information’s not getting out there see well yet

Howard: And once we get over that hurdle which is a big hurdle to get over of access, are any of the therapies that you are on or that you have been on did the brands offer any type of patient support programs you know something like maybe a patient portal that you could log in and talk to a nurse or join a support group or you know get advice on how to live healthy with specific disease states?

Barby: Not pharmaceutical companies that I know of are offering those types of things but insurance companies, some insurance companies do offer the types of things that you were just mentioning like the support groups or talk to a nurse or getting that information out but it’s not typically coming from the pharmaceutical companies which is one area where they definitely could step it up and offer those types things.

Howard: So within the patient community that you’re immersed within there’s a distinction between Big Pharma and Little Pharma?

Barby: There is a distinction between Big Pharma and the lesser-known pharmaceutical companies. They are still million dollar companies but they’re just not like one of the top five, top ten pharmaceutical companies and when you have a chronic disease some of our medications are coming from the smaller ones you’re not getting the resources from the pharmaceutical companies directly or if you do it’s Big Pharma and there’s a connotation that that’s a bad thing because of what happens on the news. So I’ve gone to a class that a pharmaceutical company held recently and they taught us about the clinical trial experience and to bring one drug to market there is like two thousand that were thought of and dropped to bring that one medication to market so there’s a whole cost in medication and understanding that and then as a patient being able to talk to other patients and saying, “hey this is the process with clinical trials this is the process of bringing in a medication to market”, hearing that from another patient or from an organization that’s once removed from the pharmaceutical company is also something that I see as beneficial because some patients get very skeptical.

Howard: I think that’s a that’s a great idea. And when you talk about things like advertisements and promotions and such that you see from the pharmaceutical companies, is television the main place that patients are seeing advertising from pharmaceutical companies or are there different mediums that could be used to reach these patient bases?

Barby: I see a lot on television I just know I’m in my 40s I know people that are in their 20s and 30s aren’t getting those same messages. I do play games on my cellphone as well so I’m like the crossover in that area and I see ads come up all the time like in the middle of Yahtzee or whatever game you’re playing Clash of Clans and the ad pops up that would be a good place to target the younger audience.

Howard: Has there ever been any collaboration with a pharmaceutical company and the International Pain Foundation from the standpoint of maybe you know sponsorships helping the International Pain Foundation to get its message out to its community?

Barby: We have reached out to pharmaceutical companies in the past to do innovative projects like this and got resistance. They do not want to fund out-of-the-box projects in our opinion more from what. We found and we actually stopped applying for pharmaceutical money for our projects because our projects are typically outside the box. We don’t want to be repeating the same message over and over we want to reach new people that wouldn’t necessarily hear the message but need it.

Howard: And how many chronic pain patients are there within the US?

Barby: According to NIH and CDC, there’s a hundred million adults and 25 million approximately, children in the United States and there’s 700 million worldwide.

Howard: And I guess that that spans across a multitude of different diseases.

Barby: That’s all chronic pain diseases. One in 2.66 people in America have at least one disease that causes chronic pain and about 40% of those patients have more than one condition.

Howard: Have you ever looked at any type of alternative treatments like hyperbaric oxygen therapy?

Barby: Yes. I actually found that using a variety of treatments is what got me into remission. I think I said earlier I did pain medication, I did incense, I did 36 ray of RFAs, 37 nerve blocks through my neck. So I definitely tried that so I personally will try many different things and I’ve been a part of clinical trials and trying to find the best treatments for me and I realized that there’s new things coming out often. And so I try not to get stuck in one thing and be open-minded about trying new things which isn’t always the case. Like a lot of patients are just like, “Give me that magic pill, I just want the magic pill.” And so they go one way and they refuse. I write a column, a monthly column and I’m doing a 12-month series on alternative options and I’m like going through the alphabet and saying, “Okay A’s, these are the things that start with “A” that you can use as alternate treatments”, now I’m up to “F”, that’s coming out any day now, but I do try to raise awareness about alternative treatments and that even if you’re just on a pain medication you can do other things like physical therapy, or just moving, stretching every day. So getting that information out and getting that word out was really important to me. That there’s not one magic pill but you need to find, not only do you need a team of doctors, you also need to find the proper treatments to help you have the best day possible, and a lot of people think it’s like one magic thing and it’s not.

Howard: And what is it that keeps you so driven?

Barby: The thing that keeps me so driven is that I started training as a cheerleader when I was 4 years old, and even if the team is losing, you still keep cheering and you still keep going. And so that’s been instilled in me so even at my lowest point, through going through all of the tragedies and challenges that I have over the years; the thing that keeps me going is tomorrow will be a better day and even though I physically can’t be a cheerleader anymore I mentally can be a cheerleader and I can take all the motivational aspects of it and bring that into my life and then teach those same motivational tools and inspiration to other people so that they can be cheerleaders also.

Howard: That’s wonderful! Very inspiring!

Barby: Thank you.

Howard: So, when it comes to pharmaceutical marketing what things can pharmaceutical companies do better that of course can help the patients but from a business standpoint can also help to build, I don’t know if the right word is loyalty or more collaboration with the patient base?

Barby: I think one of the things that pharmaceuticals can do to build a better relationship with the patient base, is let them know that these are the things coming down the pipeline so there’s a reason for hope and the help is being worked on. Like I said I got to go to a class on research, well I had no idea until I got there that it was like 2,000 medications that get thrown away for the one that comes to market. It’s like, “Whoa”, that really opened up my eyes and seeing the whole breakdown of the process and understanding that was really beneficial and helpful for me and I think if pharmaceuticals to get that message out we are actually innovative and creative and working on these medications and it does take 10 to 12 years to come to market sometimes longer and you know there’s clinical trials that you can participate in and research that you can participate in, so that you can possibly get the help sooner, and it would help pharmaceuticals get a better reputation and it would help patients understand the process and understand that there is hope and hey what can I do to help this so that I can help myself so that there’s a partnership and it can go both ways and I think through video, through print, through social media, webinars, getting that out to the public is definitely and using patients and real stories.

Howard: Wonderful. Can you talk a little bit about how with rare diseases it always takes too long to find that diagnosis. What can healthcare marketers do to help to promote or encourage diagnosis at earlier stages with rare diseases?

Barby: Oh goodness, partner with… I know the pharmaceuticals partner with NIH and work to bring stuff to us, but opening up, again, opening up that process to the patients so that they can see that that’s going on there’s also the legislation the “Open Act”, and “Right to Try”, if pharmaceutical companies could pair up with some patients and bring in some rare patients to the legislative hearings to say like here’s a face this this isn’t just Big Pharma trying to make more money but this is actually the lives that we are affecting is showing the legislators those lives. Getting people to share their story with each other but also with the legislators and planting seeds with the legislators so when they go to vote they remember my face, they remember the face of Susie, and Melanie, and Kristi, and Jeff, and Ralph. They remember these faces of these patients that say, “This is the impact on my life. If I had a medication that could do XYZ, it would change my life. And it would help me being more productive and active in society which would help humanity.” We have to do something to bring to market these options and these treatments so that patients don’t have that much of their life taken away from them to be a burden on society instead of something that is helping society and contributing. Having that voice is really important.

Howard: Wow, well this is this has been wonderful, and can’t thank you enough for the time, and for you sharing all of your personal stories with us. I have to say, hearing from you and what you’re doing for the chronic pain community is inspirational. I’m seeing someone like you, going through what you did, overcoming that, and then actually having such a strong commitment and dedication to helping others is very inspiring and there should be more people like you. So keep doing what you’re doing because it is definitely making a difference.

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