Rare Disease

A Patient’s Voice: An MS Patient’s Quest to Create More Meaningful Connections

by Howard Klein
President of Lanmark360


April 18, 2018

While Multiple Sclerosis is a well-known disease, MS patients still face many of same challenges of those with rare diseases. My conversation with Amy Adams, an MS patient who is also a healthcare marketer, included her unique perspective on pharmaceutical marketing in the MS space. Amy, also a vibrant mother of 3 boys, shared what she felt was most important to her and identified a path for healthcare marketers to help companies better connect patients to each other.

Howard: Today we’re gonna talk to Amy Adams. Amy is a mother of three, a healthcare marketer, and she’s living with MS. Thank you for your time, we really appreciate this. We’re looking forward to gaining your perspective on your experiences as not just a patient with MS, but a healthcare marketer that is living with MS.

Amy: Thank you, thank you so much.

Howard: So can you talk about the beginning of your journey, including your road to diagnosis and some of your initial experiences during that time?

Amy: Sure. I, like many other MS patients were likely suffering symptoms many years ago but didn’t realize that it was MS at play. About three years ago I did notice an increase in dizziness and numbness, and so I did decide to get it checked out. And my neurologist was, he was so kind and reassuring, and he could tell that I was getting nervous as I numbered off my many symptoms. I, at the time, thought maybe this is a brain tumor just because there were a lot of things – and until I actually had that appointment with him I didn’t connect everything. But he said, “You know I don’t think it’s a tumor and you probably said it to me, you probably think it’s MS, Amy, but I don’t think it’s MS. So let’s just, let’s just get some results back and we’ll see what the next step is.” So I had a blood test and had an MRI – kind of at the last minute he decided to order an MRI – and then a month later I got a phone call saying that in fact it was MS.  So my journey was one that I had somewhat of an idea it could be MS, but it was surprising and shocking obviously. And I think when you’re first diagnosed with the disease, you don’t truly understand what it means until you’ve had it for a few years. Because you can read about it, but until you actually experience it, I don’t think that I was able to truly grasp what was going on.

So now looking back three years – you know almost three years ago – I can see that, you know, at the time I thought I was going to be immune to future symptoms because I was taking medication. I thought that it was going to protect me; and while my medication has prevented new lesions, I am experiencing new symptoms of MS. So all in all, you know, I’m thankful I had a great support system. I live close to my family and my husband has been fantastic and I think my healthcare provider, my neurologist, is very good and I’ll be staying with him throughout my journey.

Howard: Wow. That’s great to hear that you have that support system in place. You know, talking about support system… so at the initial stage of diagnosis, what type of resources were made available to you as a newly diagnosed patient?

Amy: Well, my doctor the day I was diagnosed said, “Amy, I really think you need to start on Copaxone.” It’s a treatment that’s been out for, I think, 30 years – at the time I think it was about 30 years and it has a great result, it’s a great first-line medication for MS. And I was very thankful that through Copaxone, that Teva pharmaceutical offers copay assistance and even to the degree that they have staff that actually will work with the insurance company. That was something very new for me, being at the time I was 38, and had never really had to interact with my insurance other than when I gave birth to my three sons. To have kind of that intermediary to do that for me was a huge relief and to also know they were advocating for me. Because, I think honestly, most of us when we have to deal with insurance – we don’t necessarily think they have our best interests at heart. So I was thankful for that. And then just the nursing piece of it, I actually had a nurse come to my house to show me how they do the injections, spend about an hour with me just talking and reassuring me that I could do this and, you know, talking about her experience being an MS nurse. So I thought that that was very helpful as well. It made me realize very early on what I thought was a great drug company and at that time it was doing a very good job.

Howard: So as a healthcare marketer were you surprised to see such a high level of support coming from a pharmaceutical company?

Amy: Well, I was somewhat surprised. I felt like, looking at how to truly improve the patient experience that the pharmaceutical very much had this – had a huge win – because from the very beginning I was going to be loyal. Somebody that was going to work with my insurance to get that piece taken care of, that was going to also work with me on the clinical side, and how to take these injections, to always be there 24/7 if I had an issue with my injection I can call. So yes, I thought that they did a fantastic job of informing me and, you know, creating a loyal customer from me right out of the chute. Now, when I also, I think it was a few months into it, and I’m starting to look at the cost of this drug. The medication that I take averages somewhere around close to $6,000 a month and so, when you look at the fact that they do help with my copay assistance, which is $150 that I don’t have to pay out of pocket, you look at how much money they are making and then it made me realize well it’s in their best interest to try to make it as easy as possible for me as a patient. So, it would be … it’s brilliant.

Howard: So now, roughly about three years later, do you still look to and rely upon support from the pharmaceutical company?

Amy: Well, I do in the sense that, you know, I still take advantage of their copay assistance so that option I do use. I actually have had a nurse come back out to my house to give me a refresher on how to take the injection because they sometimes have new tricks of the trade, they can – just to make sure that I’m doing it right. I’m not a clinician myself so, I do find that helpful. They also have what’s called a peer support program where you can make a phone call and they’ll connect you with somebody that’s in a similar life stage as you are and when I first was diagnosed I did take advantage of that piece, but since then I really haven’t talked with anybody through Teva. Now, what I do do is I attend their seminars they have. Usually it’s about a quarter, once a quarter, or maybe every six months and it’s put on through Shared Solutions. It’s for the drug Copaxone.

Honestly, I don’t so much go to hear on the topic being presented, although that’s always good, but I’ve attended several of these so I feel like I know what the program is. But the reason I go is to see and meet other people with MS. I feel like in my world I don’t seem right. I don’t know many people that have enough. I know a couple of folks, but I don’t actually have that – I really have not found anybody in the same life stage as I am. So, I am a mother of three children, of course I’m married, and I work part-time in a professional setting but, I haven’t found anybody else that’s like me and that’s really what I need.

I need somebody that understands the challenges of making it to work, you know, carrying on in a professional setting, but then also is a mom and all the demands that come with children and making it to sporting events. And the challenges that we face in having MS, is that it’s very difficult to be outside when it’s hot – heat really affects people with MS and makes it harder to move – drains, you have more fatigue. So, I’m looking to, kind of have, this closer, intimate support group with women in the same stage of life as I am and that’s one area that I don’t see – I don’t see that Shared Solutions is providing that piece of it.

Howard: And so it sounds like you may have identified even on your own some workarounds to hit the challenges that come along with being a mother of three, working, and also having MS and you might have some knowledge that would be helpful to share with others. Can you talk about some of the things that maybe you have identified as helpful points of advice for others living with MS that also are working and busy lifestyles?

Amy: Yes, you know one of the things and I think this is pretty true, pretty much true with every disease state is that we need to all remain as active as we possibly can. We know that eating right, eating healthy is crucial, but so is exercise and weight management through the amount of activities that you do. The only problem is with MS we have a lot of fatigue that comes with this disease and also balance and walking can become an issue. So, for me I have always been active. I played high school basketball and actually in one of my former positions was in law enforcement with the police academy and was a police officer for a very short period of time. I have always liked to be active, but walking has become more challenging because if I’m outside I get hot or warm. So, I have the fatigue that sets in and then with MS, my legs they just somewhat feel numb and not as stable. So, one of the things that I do, is I use Nordic walking sticks. They’re walking poles and it actually, it’s something that is a – many folks use it that don’t have MS, but it’s a great way to have a pole in both hands and to feel really sturdy as I walk. I feel very safe doing that.

And so, over the course of this past spring my middle child, who is now ten years old, plays baseball and so we go to baseball practices and games and inside the park there were sidewalks everywhere around all the baseball fields. So, instead of sitting down and watching the game I would just walk and watch the game, but I had my walking sticks. So it actually had a lot – a lot of people came up to me and said, “Why are you doing this? What’s up with your walking poles?” And I decided to tell a couple of folks that I knew pretty well, “Hey look, I have MS and this is what I’m doing,” but some of the other times just for a chuckle I would say, “Hey look, I’m training for the Olympics!” So, it was it was fun either way and I got that summer – actually I wear it Fitbit – we logged in over 10,000 steps a day for, you know, for throughout the spring. So, I felt like I was really getting my exercise in.

Howard: As a healthcare marketer as well as a patient and, you know, based on some of these experiences that you’re sharing with us, do you feel that there, that there would be value to having others, you know, loved ones, friends, family understand what it feels like to have MS and if there was a form of technology, like say virtual reality, that can be used to help others experience what you’re experiencing is that something that you think would be helpful?

Amy: That’s very interesting. I had not thought about technology in that way to be able to give family members or friends a peek into the life with MS. There is so much about MS that you can’t really, you know, you can’t really explain how I have lost feeling in my thumb or whenever I prepare meals sometimes I have to be more careful with a knife because I don’t necessarily feel when I cut my hand. But the dizziness, that part of it, or just kind of feeling unbalanced, you know, I absolutely see that there might be an aspect of this virtual reality that might – could give a peek into my disease state – of what it’s like MS. I think that’s actually a very, very innovative take on it.

Howard: And from that standpoint of raising awareness do you feel that there’s enough awareness right now in regard to MS that the word is getting out there to the public so that diagnosis is happening as early as it should or can there be a better job of raising awareness that would help to lead to earlier diagnosis?

Amy: It’s somewhat hard for me to say. I have Google updates that sends me all types of information on multiple sclerosis from diagnosing to new treatments so I feel like I’m educated on it, but I go out and I seek that information. For it to be generally consumed I feel like that space within the public has become so clouded with all forms of media from, you know, especially, I don’t know, social media, but all the other distractions. I think it’s hard for any one area to really get as much exposure. I have thought though that I am a little surprised I don’t see more on Facebook from potential pharmaceuticals that should, would likely, be targeting my stage of life being the fact that I am – have children. I’m in my 40s. I’m not going to say I’m young that much anymore, but at least I am in that age group that I likely have good insurance – to somewhat message and reach out to those individuals in that age group. So, I’m a little bit surprised about that.

Howard: And so it sounds like, that social media is being underutilized and could serve as a conduit to bring together patients that are going through the same challenges that you’re going through.

Amy: I think so. Facebook is becoming Facebook Groups, is really becoming more and more popular to get information out about certain disease states. So, I think that we’re on that right track to doing that, but I’m not a part of them yet and I’ve kind of gone out to look for different folks that might be in my age group, but I really haven’t found them. So, I don’t know. There’s a difference between researching and somebody serving it up to you say, “Oh I think this would be a group that you might be interested in,” that, you know, you match many of the demographics that’s within this group. So, I think having a tool or something like that that would recommend groups would be, would be great.

Howard: What would be one piece of advice that you would give to a newly diagnosed patient?

Amy: Well, I’d say that, “This is not a life-ending disease. What we’re dealing with is something that’s going to make life a little bit more difficult.” But the way that I looked at it when I was first diagnosed – I was relieved that it wasn’t a brain tumor, it’s not cancer. You know, I think that so many other people are faced with a far more aggressive disease – something that’s going to be far more difficult to fight and I think with MS we just have to realize we’re in it for the long haul, that, you know, there may be new technology and new medicine that comes out in the next 15 to 20 years that perhaps even cures MS. That may be a little bit of a lofty hope, but I do think that even in 30 years so much has progressed and so many more options are now available to MS patients.

Howard: And it sounds like as far as online support groups go you’re not aware of any existing online support groups for patients with MS.

Amy: What I have found is, is that Shared Solutions, they do have a blog and they do have patients that have MS that prepare their blog content and, you know, I have read over that and, you know, it’s good information, but I’m ready to be part of a group that, you know, is willing to share more of the unpleasant side effects of MS as well as their workarounds for it and then just to be, just supportive of one another and a blog obviously doesn’t really do that. It just gives you a glimpse into somebody else’s life, but I feel like truly an area where pharmaceuticals could be doing so much better is helping connect patients in similar stages of life that, that bring about a sense of loyalty that we’re all in this together, we’re on the same medication we’re in it for the long haul and I just think that it would tie me closer to the drug.

Right now, you know, I’m satisfied with the fact that I have no new lesions since I was first diagnosed, but there are a lot of other drugs that are coming on the market. I think there are some things that they could be doing that are really more in a group setting and having, you know, somewhat of a led discussion from Shared Solutions, but I also realized too, that you can’t have the pharmaceutical too entrenched with these groups because then it looks disingenuous. So, yeah, but I think that there’s more that could be done to connect patients.

Howard: What are the things that you would look for in a new drug that would make your life even better than it is now while on Copaxone?

Amy: Well, I think when I was first diagnosed I was laser-focused on stopping all new lesions. I felt like I am really going to put a pause on my disease as long as I can keep the lesions at bay and that’s what Copaxone was going to do for me. Now that I’m turning out three years into this I realized that lesions, obviously you want to stop lesions, but you can continue to have MS symptoms and a progression of disability that is going to happen and even with no new lesions. And I think when you’re first diagnosed you don’t realize that. I, for me, whenever I was diagnosed I was very black and white. I’m going to stop lesions. I’m going to take my medication every day. I am never going to skip a dose, which I’ve never skipped. But that’s what’s going to fix me and I have on their drug information that this is effective and, you know, this percentage of patients – so I feel like I’m going to be in that percentage and I’m going to be fine.

What I didn’t realize is that actually three years later I’m continuing to have less feeling in my left hand and that I can sometimes have trouble walking and staying upright. I trip very often and all of that is related to my disease progression even though I don’t have any new lesions. So, when I look at future drugs that are coming on the market, I’m hearing that some of these drugs actually can stop lesions, but then they can also protect you in ways that you don’t even realize you’re going to be losing in some of your abilities, which I think to me that sounds like they’re going to help with some of these symptoms.

Howard: So what resources do you go to for information on new drugs that are in the pipeline?

Amy: So, I’ve been looking at different pharmaceuticals just because one of the areas that, you know, I think I mentioned from the beginning of our interview, I’m really looking to join, to moving on – I’ve been in healthcare for 20 years almost now – to really pairing my diagnosis with what I feel is important which is pulling these groups of people together in the same life stage. So, just because I’m interested in doing that, I’ve been going out and looking at pharmaceuticals and then looking at the drugs that they offer which has kind of opened it up, like, well there’s more than just Copaxone out there. There’s other drugs. There’s newer drugs that are coming out. The only problem is, is that how successful will these drugs be and what are the risks that they’re not going to cause other, you know, side effects and problems? So, for me, I go and I’m looking. I have my Google Alerts send me information daily on MS so new treatments that are available or just, not even just with pharmaceuticals, but maybe say exercise, eating, diets, those types of things that are directly connected to MS.

Howard: And when looking at other therapy options pay to the patient support that they have in place things, you know, things like portal, all the things that Copaxone offers you from a patient support standpoint, how does that play in relation to the clinical benefits that come from taking the drug?

Amy: Well, it’s a good question because that’s now, now that I’ve experienced what Copaxone has with Shared Solutions that’s now going to become my expectation for what other pharmaceutical I might ever take in the future. So, that is you know do they offer financial assistance with a copay? Do they have nursing support 24/7? Do they have you know injection training if in fact that pharmaceutical is an injectable or is it a daily dose you know just by mouth or pill? So those are things that to me are now becoming a standard. I would expect that. What I am very interested in though, is what are they doing in the patient experience world to connecting, helping these, helping the patient taking this medication connect with other people in that same black stage? Because here again, I feel like if I know that I’m not the only one out there that’s experiencing, you know trouble walking, when I get hot, to have somebody else to talk about, you know, what I’d like to say, I’d like to do this in an online setting but then also in person because I think there’s some things that sometimes you just can’t convey unless you are.

Howard: Maybe like an online support group did then quarterly met in a live setting,

Amy: Yes.

Howard: Or at least as a starting point, annually met in a live setting.

Amy: Mm-hmm. I think that’d be great.

Howard: And how important are patient testimonials?

Amy: Very important. I would absolutely not want to hear from you know to see an ad with somebody who doesn’t have MS. Honestly with MS they have lots of options you know individuals to put into their ads but I would expect that it would be somebody with MS. In patient testimonials, they carry as much weight with me. It’s not the same as my position but it’s pretty close under it because there’s nothing like a real world example and then looking at those reviews and having them you know I just think that it’s just like an Amazon review. I’m gonna pay far more attention to something that has lots of reviews on Amazon versus only one or two that give them five-stars.

Howard: How about patient advocacy groups? Are you involved with any patient advocacy group?

Amy: I’m not involved in any right now and I have submitted my story in my position to Teva and said that I’m on the list to become a patient advocate with them but that hasn’t happened yet.

Howard: So generally speaking we covered a lot. Your insight has been amazing, and thank you very much for that. Is there anything in general, any general message that you’d like to share in regard to what can be done better in marketing to patients with MS?

Amy: What would resonate with me, I’m looking at new pharmaceutical options for MS. It’s going to be talking to a woman that’s going to be somewhere between 35 and 50. Somebody that has children, someone that has, you know, has a career or a job. You know, I’m not at home full-time. I do carry on in a professional setting. Seeing somebody like that is going to keep, it’s going to make me think, hey look that person looks like me. They, it feels like this might be something good for me. If it’s good for them, then this drug might be good for me too. And I feel like in today’s marketing capabilities we have that ability to market a one-on-one with the audience that we are. You know, we’re wanting to follow and join our either system or our pharmaceutical. I think that possibility exists and I think that it’s, you know, those that do this well are going to be the most successful.

Howard: From one healthcare marketer to another, thank you so much, Amy.

Amy: Sure.

Howard: Speaking with Amy and learning about her perspective as a patient living with MS and a healthcare marketer was an incredible experience. This insight is essential for us in the industry to elevate the patient experience before, during, and after diagnosis. Thank you for joining us. We’ll see you next time.

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