Episode 10: Lyme Disease Patient Research Project

Cindy Kennedy, FNP, discusses how LymeDisease.org empowers patients with the group’s chief executive, Lorraine Johnson. Johnson is an attorney advocate and Lyme disease patient. Johnson joins the program to discuss MyLymeData.org, a patient powered research project. Discover how you can add your data to MyLymeData and the efforts that LymeDisease.org are taking in order to increase the quality of life for Lyme patients nationwide.

Johnson, a lawyer who also holds a master of business administration degree, is the CEO of LymeDisease.org. She is an attorney advocate on issues related to the medico-legal and ethical aspects of Lyme disease and has published over 40 peer-reviewed articles on this topic. She co-authored the Lyme disease guidelines of the International Lyme and Associated Diseases Society, published in 2014. She serves as a patient representative of the Patient Engagement Advisory Panel for the Patient Centered Outcomes Research Institute (PCORI) and sits on both the Executive and Steering committees of PCORnet, a national patient-centered big-data project. She chairs PCORnet’s Patient Council. In addition, she is co-chair of the steering committee of Consumers United for Evidence-Based Healthcare, a nationwide coalition of consumer groups associated with the international Cochrane Collaboration and serves as a consumer peer reviewer for Cochrane evidence-based protocols and reviews. She has spoken before state legislatures, U.S. and international governmental agencies, and at healthcare policy conferences throughout the world. Her blog focuses on medico-legal ethics and healthcare policy issues related to Lyme disease.

Transcript of Episode 10: Meet Lorraine Johnson, An Attorney Advocate and CEO of LymeDisease.org

Speaker 1: Welcome to Living With Lyme, the podcast where we educate, advocate and collaborate about Lyme disease. Hear from experts as they share reliable information about how to live with Lyme disease and now here’s your host, nurse practitioner, Cindy Kennedy.

Cindy Kennedy: Hi, everybody out there. This is your host, Cindy Kennedy. You are listening to Living With Lyme. Today, we are speaking with Lorraine Johnson. If you don’t know Lorraine Johnson, then you’re not really connected in the Lyme world because she is an attorney. She is an MBA. She is the CEO of lymedisease.org, which is the largest most informational social media site. I look at her as a hero. She is the wind behind the wings of change. She has her fingers on the pulse of all new information and she is the face of Lyme change. We are so excited to have you speak with us. Hi, Lorraine. How are you?

Lorraine J.: I’m fine, Cindy. That was a lovely introduction. Thank you.

Cindy Kennedy: I could say more, but I’ve been limited to 20 minutes. Tell me a bit about yourself. Tell me how you got involved.

Lorraine J.: I became involved with Lyme disease like a lot of people do. I was a reluctant volunteer. I contracted Lyme disease back in the late ’90s and went undiagnosed for a number of years and eventually was able to claw my way to a diagnosis and then start to get the treatment that I needed to get better. I spent five to seven years going from doctor to doctor trying to find out what was wrong and something was clearly very wrong, but I didn’t get any answers for about five or seven years. It took a long time.

Cindy Kennedy: That is such a common scenario. I’m really hoping that we can make better strides and change because I really feel that medicine has been given a bad information and really poor sales pitch from either their schools or their information. It’s a bad bill to sale. I am a medical provider. Back in the day, I didn’t know because I wasn’t connected. All the work that you are doing hopefully will make big change and I applaud you wholeheartedly. Again, you weren’t doing well. You experienced the whole Lyme issue and then how did you become so involved with lymedisease.org?

Lorraine J.: That’s an interesting story. I ended up getting diagnosed by a physician who had received information about Lyme disease a couple of weeks prior to me coming to visit her from someone who is on the board of lymedisease.org, Barbara Barsocchini. Interestingly enough, this was a physician who is willing to go through and do a differential diagnoses with me, sort of, “Something is wrong. We don’t know what it is. Let’s look at your immune system. Oh, your immune system shut. Let’s see what’s causing that.” Just step-by-step methodically go through and figure out what was wrong and give me the diagnosis of Lyme disease. Interestingly enough, after I was diagnosed, I went on the internet and I said, “I’ve been diagnosed with late stage Lyme disease. Does anybody know any resources?” The person who reached out to me was Barbara Barsocchini, the same board member who had educated my physician and she encouraged me become involved with the board. I did that very early on. 2002, I was involved with lymedisease.org.

Cindy Kennedy: Were you feeling okay at that time?

Lorraine J.: No, I was really pretty sick. Lymedisese.org, by the way, it’s one of the oldest group that’s been around since 1989. It’s a little surprising, one of the oldest group in the nation and was founded in Ukiah, California. It was founded as a grassroots organization. When I became involved, I was very sick. It took me a couple of years of very aggressive treatment to get better. The first thing I did as I was getting better is I started writing an article that was about … My background is law. I’m an attorney with an MBA. I started writing an article about medical legal issues and Lyme disease and how patients ought to be able to make treatment choices and how physicians ought to be able to choose between two schools of thought in terms of determining what was the best treatment approach for a patient.
That article, I took it to our board and we ended up publishing. Dr. Stricker and I ended up publishing it in 2004. That got me on the path of publication and very serious involvement on the scientific and research of Lyme disease. [inaudible 00:05:30] and I have published over 40 publications that are peer reviewed so far. I’ve done a number on my own. It’s one of those things that serendipity fall in with the right group of people at the right time and do get on a path that’s very meaningful.

Cindy Kennedy: That’s unbelievable because I’ve read some interesting information about some of the big providers in the Lyme disease world. They’re doing all this research and trying to publicize this information and they were turned down from big medical journals because the information and I guess they just didn’t want it. I’m happy to hear that all of that. Now, the biggest part of your information to discuss today is the biggest project that has ever come to be regarding Lyme. Give us the details on that.

Lorraine J.: Let me step back for just a second and talk about who lymedisease.org is and what we’ve done as an organization because there are a lot of organizations out there that are doing really good work. I think there are organizations out there that are funding people who are doing research. There are organizations that are working very intensively in the legislative arena or doing large conferences, scientific conferences. What we do is we do empowerment and empowerment for the individual patient. Our focus is on providing individuals with the tools that they need in order to gain the power to be able to have a political voice that matters in terms of making legislative change, in terms of making scientific change.
We’ve been doing that for a very long time. We do that with our website. We have one of the largest educational website. I think we have the most expensive archive of information on Lyme disease on the internet at this point. We do it through VoterVoice. If people are trying to pass legislation and say, Massachusetts for example they were passing legislation to cover insurance, we step in and provided a VoterVoice tool so that people could write in to their legislators. Do it like instantly and work with people on the ground and have 6,000 people contacting people in Massachusetts. These are Massachusetts residents, right?

Cindy Kennedy: Right.

Lorraine J.: Having to pass those legislations. The other area we did that in was the 21st Century Cures Act, which established the working group for Lyme disease. First time patients have ever had a voice in Lyme disease on this type of a panel. That was negotiated by the Lyme Disease Association. Pat Smith did that. Then, we went in and with VoterVoice, we brought in 14,000 people within three days to get that passed. This empowerment concept, this notion that patients really need to have the power to get out of the margins and to start helping themselves is one of the things that we’ve been really strong on.
The other thing that we’ve done for the past 30 years is we published the Lyme Times, which I think is the most extensive publication out there. We’ve tried to provide patients with tools. We provide them with something called a symptom checklist, which is for people trying to get diagnosed. They don’t know if they have Lyme. They go and they answer some questions. We provide them with information. Then, they can actually get a printout to take to their doctors, to educate the doctors. Those are the areas that we’ve been involved with, which all involved giving patients a voice and engaging in a dialogue with them. It’s not a one way process. It’s a two-way process.
About 10 years ago, we started doing large scale surveys because it was clear to us that we were able to reach a large number of patients and start gathering some data that just hadn’t been gathered in Lyme disease. The very first survey that we did with lymedisease.org was on paper and it was printed on two sides. We distributed it through physicians and in one year we got 100 people to reply to that survey and then we analyzed the data and we published the data. A year later, the technology had changed so much that we went out with the survey and we drew over 5,000 responses within six months. That’s what technology change can do for you in terms of being able to really have a broad reach.
We published our first large scale survey that was on access to care, the problem that patients have obtaining a diagnosis, how many physicians they see, how long it takes to be diagnosed. That was published in a major peer reviewed journal and we work with Stanford on that and a few years later we did our second large survey that we published, which was actually on quality of life. Do patient simply suffer from the aches and pains of daily living or is there something more serious going on there? That was published in 2014. There, we worked with Jennifer Mankoff over Carnegie Mellon to pull together that work. These two publications have become vital touchstones for people who are trying to implement policy change. If you go in and you see a legislator and you say, “We really need help.” They would say, “Yeah. I’d like to help you, but you’ve got to have some data. I need something to go on here, something to talk in a legislative committee about it.”
Suddenly, we had all of this data about how long it was taking patients to get diagnosed, how long it was taking them to get treated, how many patients have coinfections. I don’t know if you remember, but they used to say, “Oh, coinfections are rare.” When we did our study, which was people with chronic Lyme disease, so people who have been sick for a long time, the majority of patients had coinfections and that was the very first time that that statistic was published. That’s a really meaningful thing for legislators and policy makers to know. We also developed information about how many people were unemployed, how many people are on disability, how many people were reporting a poor quality of life.
We were able to actually compare Lyme disease to a lot of other diseases because we used standard government questions in that survey. We were able to compare a Lyme disease patients, with AIDS patients, with heart disease patients, with patients with fibromyalgia, patients with MS. Suddenly, we have this big comparator, and you look at the question of, “This Lyme patient simply suffer from the aches and pains of daily living and the answer is a resounding no.” They have a worst quality of life than most of these other groups. It’s putting together these pieces of information that are vital to create policy change is how we first became involved in doing large scale internet-based surveys with the patient community.

Cindy Kennedy: This is so needed. The age of internet and how fast information can travel is so important. I want to know why these medical schools are not latching on to this information and why is it so far and few that where people are making that stand and that change. People are petrified to stand up and say, “This is what it’s all about or really looking to the research.” I had a friend who is a nurse practitioner as well. She was at a big conference down in Las Vegas a couple of weeks ago I believe. She said someone who is a physician stood up and said, “I just want to let you know …” It’s part of his talk. He said, “I just want to let you know there is no such thing as chronic Lyme disease.”
She said at least four times. Then, she said to me while I was talking to her, “You know there really isn’t a lot of information that there really is chronic Lyme disease.” I pulled up about 30 articles and I just copied them all and I sent them to where I haven’t heard back yet, but this is a big problem. Some of my patients are primary care people and they insist that it has to be attached for 36 hours. I tried to tell patients, “Listen, you can’t always go by that and you really just need to know.” I’ve encouraged patients that I see that have been diagnosed with Lyme to actually give their information to your MyLymeData.
Before we wrapped up here, give me some information that I can have on this podcast that will tell people how they can become involved, how can they give their information about their Lyme disease, their parent’s Lyme disease, their friend or a loved one that they lost, so that they can be part of your database.

Lorraine J.: MyLymeData was an extension of all the survey efforts that we’ve been doing and we launched two years ago. We have had over 9,000 people have enrolled, which makes it actually one of the largest patient lab, patient registries in the nation. I think that secures the survey and there were only two registries that were beyond 10,000 and we are quickly approaching that. We are really quite large info database. We’ve been compiling information about exposure, about diagnosis, about coinfections, about treatments, about symptoms and we track patients over time.
Last year, we actually launched phase two, which allows us to track patients longitudinally. Each quarter, we do a follow up survey. We also launched a portion dealing with the dissidents. If somebody has died in a family, it allows people to go in and enter information about the cause of death. There’s very little known about a lot of these areas. We now have over a million data points that we have collected and we are working with different researchers. Fortunately, some researchers we are working with at UCLA and at Claremont McKenna, who are big data researchers recently received an award from the National Science Foundation, which is really one of our leading scientific institutions in the United States for $800,000 to conduct research.

Cindy Kennedy: That’s unbelievable.

Lorraine J.: Unbelievable, yes. To conduct research using data from the MyLymeData patient registry because we gathered so many data points. They’re going to be helping develop the science of analyzing data using artificial intelligence techniques and that sort of thing within just the big data realm generally and specifically focusing on the MyLymeData database, which means that we’re going to be able to pull out some information that we just happen had the tools or the resources to be able to do before. I encourage anyone who is listening to this podcast who is not a member of MyLymeData or if you have friends who have Lyme disease to go to mylymedata.org and enter your information. We need people who are sick. We need people who are well. We particularly need people who are well because they have an awful lot to teach people who are sick. They can tell us why they got better.

Cindy Kennedy: That’s so good. Before we end, I do have a couple questions for you. You had a lot of experience from this purpose, this study, your background as an attorney and you drive is commendable, but everybody has issues that really upset them. Tell me what ticks you off.

Lorraine J.: What ticks me off is that Lyme disease has been known about for a long time and we have made so little progress in research. The last federal-aid funded treatment study for patients with chronic Lyme was funded over 14 years ago. The largest study of Lyme patients included only 129 patients. That’s what really ticks me off is that we know so little about this disease and we’ve had so much time to discover a lot more.

Cindy Kennedy: That’s like someone trying to protect you by giving you a straw hat in the wind. Isn’t that the case?

Lorraine J.: Yes.

Cindy Kennedy: I don’t know. I want to say like probably one of the worst things in medicine. It’s embarrassing truly. Now, obviously, there’s times in life that we get thrown a bunch of lemons and our choice would be there to be sour or to make lemonade. I’m making lemonade by educating people and doing this podcast and talking to incredible people like you. Tell me what is your lemonade?

Lorraine J.: I think the lemonade here really for all Lyme patients is that we are now at the point with technology where we can all lean in and provide the data that’s necessary to conduct good research. We can work with researchers who care about benefiting patients to start finding cures. We’ve never had this opportunity before. The big lemonade that I think that I’m interested in is empowering the individual patients to stand up and to actually make change.

Cindy Kennedy: I think that’s a great idea I think there’s a lot of individuals, support groups, but they’re all tiny. My husband always says, “We need to get behind a lot of these little organizations, make them bigger and have this gigantic million man march and make some headway.” I think we all need to just stand behind you guys. I feel you guys are the snowplow. You guys are going to clear the road and we’re going to make a lot of change and a lot of people are going to get better because of your information. A lot of people will be treated more appropriately.
I think that the way patients are dismissed with their symptoms and told a variety of things such as, “Okay, you just have an emotional issue. You are just anxious. Really, you just have general arthritis, etc.” We could go on and on. I’m hoping and I’m really looking forward to the day that those times have changed. Lorraine, it has been my pleasure and I have to thank you so much for all that work you do. I’m thanking you from the bottom of my heart and all patients that are out there that are either diagnosed or undiagnosed with Lyme disease. I look forward to meeting you in person. Thanks again. I wish you well in all your endeavors.

Lorraine J.: Thank you for having me, Cindy. It’s been a pleasure.

Cindy Kennedy: All the time. For all of you out there, this has been Cindy Kennedy with Lorraine Johnson. I look forward to talking with you all again. When you’re done with this podcast, don’t forget to tune in again to livingwithlyme.us. Have a great day, the best to all of you. Bye now.