Samantha Reid is the Digital Director for Patients for Affordable Drugs. Growing up in Illinois, she suffered from a “bad stomach” and weakened immune system, having caught pneumonia nine times by the age of nine. But it wasn’t until she was in her late teens that she sought answers. A diagnosis of Crohn’s disease eventually led her into patient advocacy, where her passion for improving patient quality of life helped her find her way to P4AD. Now an active member of the Spoonie community, she’s also the creator behind the “Sicker Than Your Average” campaign, which was originally designed to help her raise money to cover her own medical bills, and has since expanded to include donations toward racial equity causes. In 2019, she had the once-in-a-lifetime opportunity to testify to Congress, where she told our elected officials that “good health is not a moral virtue, and bad health is not a moral failing.” She has also used her voice to teach us that “if your activism doesn’t include disability justice, it’s not as intersectional as you think it is.” A lover of books, feminism, friends, family, and cats, she’s the millennial we all want to be one day. Join us in welcoming this bright spark to the show!
Tune in as Samantha shares:
- that she was diagnosed with Crohn’s at age 18
- that Crohn’s disease can affect any area of the digestive tract, from the mouth to the anus
- why her relationship with the word “remission” is tricky
- the importance of boundaries in order to manage her fatigue
- a discussion about healthcare accessibility and the need for systemic change
- where improvements need to be made in the working world in terms of accommodating folks with chronic illness and disability
- her experiences of medical gaslighting
- how she gets the most out of her doctor’s visits
- what her work in lowering drug prices means to her
- why pharmaceutical price gouging is killing Americans
- that every major country in the world has made it illegal for big pharma to advertise to civilians — except for the US and New Zealand
- how her diagnosis hinders her work options because of drug pricing and access to insurance
- that funding for the research behind the development of many of the drugs that pharmaceutical companies charge us for…came from the public
- that Abbvie makes more on Humira than the profits of ALL NFL teams combined
- that she testified to Congress in favor of HR3 (which is currently stalled in the Senate, though it passed in the House)
- that we are living in an interesting time: legislators are beginning to understand that the public is holding them to their word and watching them
- the vital importance of mental health support for those living with chronic illness and disability
StuffThatWorks empowers people with chronic conditions to transform their experience into an organized knowledge database aimed at figuring out which treatments work best.
The Crohn’s Disease Community on StuffThatWorks currently has 1289 contributing members. As more people contribute, the insights become smarter and more personalized. To contribute to the research and join the Crohn’s Disease Community on StuffThatWorks, complete the treatment effectiveness survey.
Here’s a look at the most INDICATIVE symptoms for Crohn’s, based on AI-analysis of the experiences of the contributing members of the Crohn’s Community on StuffThatWorks. On a scale of 1 to 10, the higher the score, the more indicative the symptom is of Crohn’s.
Here’s a look at the most INDICATIVE comorbidities for Crohn’s, based on AI-analysis of the experiences of the contributing members of the Crohns’ Community on StuffThatWorks. On a scale of 1 to 10, the higher the score, the more indicative the comorbidity is of Crohn’s.
Crohn’s disease and ulcerative colitis, the 2 main types of IBD, share many symptoms. The diagram shows common symptoms -- what's the same & what's different.
**The listed symptoms are not the most reported ones but rather the most INDICATIVE ones. This is based on data shared by nearly 2,000 StuffThatWorks contributors who are diagnosed with these conditions.
Lauren: All right, guys, thank you so much for joining us. I am here today with the digital director of Patients for Affordable Drugs, Sam Reid. Hi, Sam, thank you so much for joining us.
Sam: Hi, thanks for having me!
Lauren: It’s such a pleasure. I'm so glad we got in contact. It was actually Sneha Dave who connected us. Sam's on the show not only because she works with patients and lobbying to help patients get more affordable care, but also because you live with invisible illness. So you're going to tell us all about it. Awesome.
Sam: Yeah, so I was diagnosed with Crohn's disease almost exactly 10 years ago now.
Lauren: Happy anniversary!
Sam: Thank you! Thank you. It was in February of 2010. I was 18 at the time. When I say 18 at the time, I had literally just turned 18; it was like three days after my birthday, a prime time for a life-altering diagnosis.
Lauren: Happy birthday, you can buy porn and you have Crohn’s!
Sam: Exactly, exactly. It was wonderful. And it had been, obviously as anyone I think who's gone through the diagnostic process knows … it had been a long time coming. Luckily for me, not as long as for some other folks, I know that. There's unfortunately no good data on exactly how long it takes people to get diagnosed. But I have heard anecdotally anything from right away to several years. I was right about in the year range.
Lauren: That was pretty quick, actually, relatively speaking.
Sam: Yeah. And that was, I would say, a year from when I decided personally that things were very bad.
I had been living my whole life with a weakened immune system and what my family referred to as “a bad stomach".
There were many bad stomachs in our family. So no one really thought it was that serious. No one was overly concerned. So I took their cue and was also not overly concerned. But like I said, I had that really weak immune system, along with the stomach problems. I had pneumonia nine times before I was 9.
Lauren: Oh my gosh.
Sam: Yeah. So I was always a little bit of a medical mystery. I could go into 8 million different stories of weird ailments that I had that no one could figure out. But it was when I was 17 or so that I really put the hammer down with my family and was, like, “We need to go to a doctor, we need to figure something out.” Because I was drastically dropping weight. I lost like 40 pounds my senior year of high school. I was already pretty small at that time. And so it was concerning. Of course, when you're 17, 18 years old, you lose a bunch of weight, everyone’s, like, “Great Prom diet.”
Lauren: “You look so wonderful!” Let's just put this out there … We all just need to stop complimenting people on losing weight.
Sam: Absolutely, no more. Especially because as someone with Crohn’s, I tend to be a little heavier when I'm healthier.
Lauren: I think we’re all heavier when we're healthier.
Sam: Right. And I’m, like, my body is loving food right now.
Lauren: And you're not stressed and having inflammatory responses when you're well. Your body’s, like, hey, I’m happy. We're good here.
Sam: Yes, absolutely. I always think of it in terms of quality of life. And at that point, I really didn't have any quality of life.
I was skipping social events, because I was worried about getting sick. I was pretty much living on Saltines and ginger ale.
And my family knows how much I love food. So they knew how concerning that was. So I finally talked my parents into taking me to a doctor and I got referred to a GI. And that was when I was diagnosed with Crohn's. For anyone who doesn't know, Crohn's disease is under the umbrella of inflammatory bowel diseases. It affects me personally in my terminal ileum. But as they love to say, it can affect anywhere from your mouth to your anus!
Sam: What a fun tagline! And so it is inflammation in your GI tract. But you can also have a lot of not-so-fun extra intestinal symptoms, which I've unfortunately had — including really dry eyes, joint pain, everything under the sun. Fatigue is really horrific for a lot of folks with Crohn’s, and something that I think the medical field has not really figured out yet is why 40% of Crohn's patients who are in remission still report really debilitating fatigue. So it is a kind of a game-changer. And unfortunately, when I was 18, I was young and a little reckless, and didn't take it as seriously as I needed to. And I think that that is what drove me into advocacy. Because when you're diagnosed at that awkward cusp when I was diagnosed … I have since as an adult met folks who were diagnosed as children, and they had these really great support systems and care teams of pediatric doctors. I unfortunately went directly into adult care. My parents didn't know anything about Crohn's disease. My doctors, I don't think did a very good job at the time explaining to us what we should expect. I just wanted to go to college and not think about it! So that is my diagnosis journey. I got lucky that those first couple years in college, it was really well controlled. I was on a really not too intensive drug regimen. And I got to not think about it a lot. Things have obviously since then taken a bit of a turn.
Lauren: Well, you mentioned something interesting … I'm wondering about this concept of remission, Because I see a lot of these chronic conditions, they’re lifelong management … you know, you're going to have to change your lifestyle in some way for the rest of your life in order to manage potential symptoms from flaring. And I'm wondering, when you say “in remission”, does that mean somebody who's on a drug regimen that's working for them is considered to be in remission? But if you eat the wrong thing, or you do the wrong thing that you could flare back up again?
Sam: Yes. Because of what you just mentioned, I actually have a really tricky relationship with the word “remission”. Because I have, over the years, been in remission at various points, and it rarely feels like it. Because of the way Crohn’s ravages your body when it's in a flare, you have lingering issues. I have some dysmotility issues that linger. I am one of the lucky folks who has IBS and Crohn's. So I would say that I rarely feel like I'm what you would picture as remission. Like I said, so many of us still struggle with fatigue in remission. And so, one of the big lifestyle changes I've had to make is really learning how to pace myself. I’m 28 now and I never pictured myself being someone who’s, like, okay, I have plans Tuesday night, and I have plans Saturday night.
Lauren: That’s it!
Sam: That’s all I can do.
Lauren: Don’t worry, that happens in your 30s anyway!
Sam: I’m not too far off. That's what my doctors keep telling me, “You’ll catch up.”
Lauren: Well, you end up going from FOMO to JOMO! (laughs)
Sam: Oh, yes. I truly think the hardest part with that … I am an introvert; I like to refer to myself as an extroverted introvert. Because I think a lot of people wouldn't think I'm an introvert upon meeting me. But I do really recharge being at home. I think part of that is my personality. And part of that is the fatigue. That being said, I have a lot of hobbies that make it so that I really enjoy my time at home. But there is always that struggle of seeing your peers, especially when you're in your 20s … it's getting easier now, but it was a lot harder when I was like 24, 25, seeing your friends all going out all the time, and they don't necessarily understand why you can't.
And fatigue is this very nebulous symptom, and pacing yourself is this thing that's very hard to explain to healthy people.
Lauren: My gosh, yeah.
Sam: I've gotten much better over the years in kind of protecting those boundaries and not saying yes to too many things.
Lauren: Yeah, absolutely. So what steps have you taken specifically up to this point to get to a place where you feel like you're a little more in control? Have you had surgeries? Have you been taking medications? What does that look like for you?
Sam: Knock on wood, I have not had any surgeries.
Lauren: I’m knockin’ that noggin!
Sam: Although I do know that, I think it's Crohn's & Colitis Foundation has put out a statistic that one in four patients with Crohn's will need at least one surgery in their lifetime. And when you're dealing with Crohn's, it's usually pretty major surgeries. I have friends who have their whole small intestine removed. You mentioned Sneha …
Lauren: She's got a J-Pouch.
Sam: Yeah, she's had some pretty aggressive surgeries over the years.
Lauren: And one other person I've spoken to who has Crohn’s actually has an ostomy bag. So there’s all different things.
Sam: Oh, absolutely. And that's what I always try to tell people, too … people get this with every illness, but every once in a while, I'll have someone be, like, “Oh, my high school soccer coach had Crohn’s, and she was fine.”
Lauren: Great, thanks for that. Yeah, that's really helpful.
Sam: Super helpful to me. But I always tell people that every patient is different. And every experience with Crohn's is different. And even for me, day to day or depending on what year you meet me, or what point in my life you meet me, things are very different.
And so I think it's always best to just let people tell you what they need and believe them.
Lauren: Yes, say it again for the people in the back!
Sam: So for me, it wasn't surgery. I was diagnosed in 2010. And in late 2015, was the first time I had … in those five years, I had had small flares, things that would last a week or two, or I would have what I call bad days, but nothing major, nothing that I had to change my lifestyle. And then it was in late 2015, I was hospitalized with a Crohn's flare, and things kind of just progressively went downhill from there. I got to a point where I couldn't really eat anything. No matter what I tried, even the things that I thought were my safe foods weren't working. And with not being able to eat comes a lot of other issues. I was at a point in early 2016 where I could barely walk up a flight of stairs, I was so weak. I remember trying to go into work one day, thinking it would be okay. And then a few hours in, having to go home because I was in so much pain that I passed out in an Uber. So that year was really probably the hardest year of my life. I was sick for that whole year, essentially. And what has worked for me since then, has gotten me to a place where I'm able to work and live and go to yoga and travel and do things like that … I started on Entyvio, which is a biologic infusion, in March of 2016. And you're probably thinking, well, if you started in March, why were you sick for that whole year?
Lauren: It takes time, people!
Sam: Yes, the fun thing about biologics is it can take six to nine months for it to really kick in. And so now luckily, I've been on that for four years now, and knock on wood, I have not built up antibodies yet.
Lauren: Because this is a common thing that happens, that patients develop tolerances to various medications. So over time, you're going to have to continually monitor where you're at and potentially change things up.
Sam: Yeah, so Entyvio has worked really well for me. I wouldn't say I'm operating at 100%. But I am doing so much better than I was.
The tricky thing about biologics is, patients will, at some point, build up antibodies to the drug, and then they can't take it anymore.
And so that's why it's this very delicate treatment dance of, what should I be on. That's why it's so important that we have new options coming out all the time. Because at some point, I will no longer be able to take Entyvio, and I will have to switch to something else.
Lauren: Well, and that's the important thing for people to understand — the research is never done. There could be all the funding behind the research, but that doesn't mean we're done with it, we have to keep pushing.
Sam: Absolutely. And that's what I always tell people. I think biologics are a tricky thing for people to wrap their head around, because people are used to pills and generics and things like that. And biologics really are their own animal.
Lauren: Yeah, and can have really serious side-effects, too, if it's something that doesn't work for you, as can any medication.
Sam: Yes, and I have been really lucky within Entyvio; it is one of the safer biologics. So that's been really great for me. But it does mean that once a month, I go to an infusion center, just across the state line in Maryland; I get an hour-long infusion of Entyvio. I'm very lucky that my workplace is very accommodating of all of my appointments and things, because in 2017, I had an adverse reaction to the Entyvio, which is, like you mentioned, very common in biologics. And we discovered that my body maybe doesn't tolerate it as well as I'd like it to. I went into anaphylaxis at the infusion center. Luckily, the nurses are fantastic, got it under control really fast. But now because of that, I have to take a pretty high dose of IV Benadryl before every infusion.
Lauren: Which probably knocks you out, too.
Sam: It does, it makes the day a wash.
Lauren: Right. And this is important for people to also understand … this is beyond the holiday days that you would be allotted. This is a medical necessity once a month, where you need a whole day because otherwise you just can't function.
Sam: Right. And sometimes I do feel guilty about it, because it is just a whole day that I'm not at work, I'm not doing anything productive.
I am sleeping, and I am dealing with what I and some of my other friends with infusions call “the infusion hangover”.
And so I have to remind myself that is in and of itself productive — what my body needs me to do.
Lauren: That's a really tough one to get your head around. I'm glad that you brought that up. Because I think it is really hard to be okay with not being terribly functional some days. You know that you have to give into it, because there's really no other way around it. But it's for the better good of your body in the long term.
Sam: Right. And I mean, we're kind of living in this time right now, where everyone has a side hustle or everyone's doing work 80 hours a week. And so it is so easy to fall into that mindset that you are only as valuable as the work you're able to put out.
Sam: And it has been a long journey for me of kind of reprogramming my brain to understand that when I'm able to do things, that is valuable. And when I'm not able to do things, that is also valuable — because it is what my body needs.
Lauren: Yeah, absolutely. So going back to the diagnosis stage, the earlier years for you living with Crohn’s … you mentioned that you laid down the law with your family and you were, like, “I need to see a doctor, a specialist; I need to get tested.” It sounds like pretty early on you were acting as your own advocate. I'm wondering whether anyone in your family or friends has ever stepped in as a personal advocate at any point? Or whether it's really just been you all along realizing that you needed to take control of your own body.
Sam: My family is fantastic. And I think over the years as my disease has gotten worse, they have stepped up. They’ve realized that this is not something we can ignore.
But I do think that I come from a very blue collar, Midwestern, rub-some-dirt-on-it kind of family!
Take a Tylenol and you'll be fine. And so it was a bit of a journey to get us to the point we're at now. I did really have to advocate for myself, and I had to learn to use my words and tell my friends and family what I needed.
Lauren: It’s a really important point.
Sam: It is, because it's very hard (a) to admit you need help at all. But (b) to be specific about the help you need.
Lauren: Yeah, because sometimes you don't know what that is.
Sam: Right. And so I have gotten better at that over the years. My parents have gotten better about being receptive to that over the years. In 2016, when I was pretty much confined to my house most of the time, because of how sick I was, my mom would drive in … I was living in Chicago at the time, and I'm from the suburbs of Chicago … and my mom would drive in, and we would just go to a very simple breakfast. But that was what I had to look forward to at that time. I wasn't socializing a lot, I was doing that. And so I think little things like that … My dad came and assembled furniture for me when I needed it, and things like that. So I think that, to their credit, they really, over the years, got a better understanding of the seriousness and what I needed, and that I'm doing this alone. I live alone; I'm not in a serious, committed relationship. So everything that I'm doing to care for myself, it's just me. And so sometimes I do need that help. I will say, I have moved to DC within the past two years. My sister lives here. And so that has been really lovely. She was already away at college when I was diagnosed. So this is kind of her first experience living around me while I'm sick. And she has been really great. I bring her along to appointments when I think I need backup. Sometimes you do need backup. She doesn't come to all of them. But she comes when I’m, like, I think I need another person there. I think that at 18, when I was first diagnosed, and into my early 20s, being independent was so important to me. Even as a kid, it has always been very important to me. Actually, before I got really sick, I spent a few months living in Los Angeles, where I didn't know a soul, had no family, had no existing friends, support group. And that was actually when I started to get sick, and I had to move back home. And that was a really good lesson … when you're living with a chronic illness, you shouldn’t let it stop you. But you also have to be realistic about having a support system around you. And there are truly things that I came to realize when I was living on my own in LA, which was that you literally need someone to to be there to discharge you from the hospital.
People you just met a month ago maybe aren't people you can call to bring you home, or to be your ride home from surgery, or be your ride home from a colonoscopy.
You need someone close … and whether that's a close friend or a significant other or a family member … I now am very adamant that I would not make a major move without knowing that I had that person in whatever city I was in.
Lauren: Is that a source of anxiety, thinking about the future and going, well, I can't just go anywhere … you have to think about all of the ins and outs?
Sam: Yeah, absolutely. I do see myself eventually moving back to Chicago at some point in my life, maybe when I settle down and want to have kids and do all that. I love Chicago. It's my favorite place in the world. But it is a little limiting to know that if I did want to settle down and have kids, or if I did want to do X, Y and Z, I need that extra support. Because I am not a full able-bodied person who can do all of these things for myself.
Lauren: And you also have to be in a place where there's very good medical care. You can't be out in the boonies; you have to be near a major hospital.
Sam: Absolutely. I've been very lucky that I got diagnosed at 18. And then I went to college in Chicago. Chicago, LA and DC — I’ve always lived in a major city.
Lauren: So have I; I'm with you on that one. We’re sort of spoiled, because we don't know anything else. But you start to go around the rest of the country and you’re, like, there are these other ways of living … but the hospitals!
Sam: I have friends who live in rural areas, and I'm just reminded of how lucky I am to have immediate access to such a high quality of care and to so many different specialists. And I know, as I'm sure you know, sometimes specialists have very long wait periods.
So I can't imagine the struggles that folks in rural areas have to go through to get on those waiting lists and get seen and get help.
Lauren: Well, it's hard enough to be believed, to be taken seriously in a major metropolitan area with all the specialists. It's definitely more of an uphill battle that way, I'm quite sure.
Sam: Yeah. And I think of the fact, too, that if I have an experience with a doctor, and I’m, like, oh, that was uncomfortable, I did not like that doctor, I can go see someone else.
Lauren: Yes. A lot of people don't have that option.
Sam: Yes. If you're in a town where this is the only gastroenterologist, you're going to make it work with that gastroenterologist. And that is a shame. I hope that rural health care can improve, but there's also limits just purely by the amount of people.
Lauren: Yeah, absolutely. Well, it'd be nice if there were more doctors who were open to not having to be at the major hospital, going out into areas where there's still need for that kind of care. And maybe living a slightly different kind of lifestyle and embracing that, so that other people can have help from them, would be pretty amazing. That would be nice! So what's a typical day looking like for you now, as you're balancing the demands of work and life and your symptoms? I know you mentioned your safe foods earlier. How is that sort of manifesting day-to-day?
Sam: I think at this point, I have a pretty good toolkit of little ‘Band-Aids’ that I could use throughout the day. I am a big appreciator of Icy Hot.
Lauren: (laughs) Aren’t we all!
Sam: My heating pad. I love my work heating pad.
Lauren: That’s a good point that you bring up there about making your workspace as comfortable as anywhere else, so that you can feel safe and not anxiety-ridden if you do have minor symptoms at work.
Sam: Yes, I am a nester, for sure. And I think that that is actually something that a lot of folks with chronic illness identify with, always carrying a bag of extra meds with you. I'm like Mary Poppins. I have a lot of things to fall back on. But I think the biggest thing is that I've been really lucky to leverage my skill set into a career where being a patient is an advantage. I bring experience that other people don't bring. I have very accommodating supervisors and co-workers. I'm lucky that I was at a point in my career that I had enough experience that I could say, “Hey, I need these accommodations” — and know that that would be respected.
Lauren: Well, and also feel that you were in an environment, professionally speaking, that was open to you asking for what you needed.
Sam: Yes. And I work from home every Friday, which is huge in terms of just my energy levels. I can take unlimited medical time for appointments. and things like that. They don't count that against my vacation time, which is really key. I would say one of the questions I'm most often asked in my advocacy with younger patients is, “When do I disclose?” Which is a really fraught question, right? Because it's different for every person, it's different for every scenario, I always say you kind of have to feel out the employer and see what you want to do. And if you're in a position where you have leverage and you've developed your career already, you can do some negotiating and ask for a work from home day, or things like that. But I also realize that that is a privileged place to be coming from, and that there are some folks who just have to take the job because they need to pay their bills.
And so I think that there is a lot of improvement to be made in terms of accommodating folks with chronic illness into the working world.
Lauren: Yeah, absolutely. And also understanding how many people are living with various forms of chronic illness, because it's an epidemic. We're looking at epidemic scales. But for whatever reason, the working world has not been renegotiated to work around our bodies. Like you said earlier, people are working this 80-hour work week, and everyone has a side hustle … that's not going to work when you're someone who's dealing with fatigue or brain fog, or potential flares that are brought on by stressful situations. It’s just not sustainable, is it.
Sam: Well, my favorite soapbox, that I'm sure annoys the hell out of my DC friends is, I am the person that's always like, “It's not cute to brag about how you haven't slept this week. Or how you don't have time to eat.” There is this pervasive culture that's like, the harder you're working, the better you are. I think that we don't need to kill ourselves in pursuit of our jobs. Even if your job is changing the world and doing really excellent work, you still have to take care of yourself. And you have to set an example for others that it's okay to take care of yourself. And I think that starts at the top in organizations. It's really easy to get swept up and be like, I'm going to stay up till 1am answering emails; I'm going to work on the weekends, I'm going to do all these things. And I think it's incumbent upon leaders within companies and organizations to set the culture that that's not the expectation.
Lauren: Absolutely. What about when people don't believe you, though? I'm sure you've found yourself, and you mentioned earlier, in situations where you've had to validate your own experience for other people, and get people to believe you. What happens to people when they're not believed in these situations?
Sam: I think that is one of the hardest parts, because a lot of these symptoms are nebulous and hard to explain.
Lauren: And totally invisible.
Sam: Yes! And truly healthy people, I think often, it's a defense mechanism that they don't want to believe that this can happen. Because if it can happen to me, it can happen to them. And if it can happen to you, it can happen to them.
I think that there is this pervasive thought among people who kind of want to push it away that … “Oh, no, no, if that was me, I would just work harder, I would handle it.”
Lauren: You're already working harder to look normal!
Sam: Yeah. It's like, “Oh, no, no, that would never be me.” I think that is the hardest part. And I think that's where it comes from often when people don't believe you — this idea that that could never be them. And so you must have some moral failing or personal failing that is leading to you needing these accommodations, or you needing help. That is the idea that we have to crush. I think that crushing that comes from telling our stories …
Lauren: Being truthful.
Sam: I would say the most often I've had people not believe me, or I've had to justify my symptoms to someone, has been in scenarios where it's the older generation. I think, in that generation, my parents, my grandparents, etc. …
Lauren: The bootstrappers.
Sam: Right. Not them specifically, not my parents. But folks that age. It's taboo to talk about your health. They see it as a taboo, they see it as potentially like attention seeking, which makes me irate!
Lauren: It’s forever connected to this idea of what a millennial is, and it's just so incorrect.
Sam: Yes, all we want to do is talk about our problems. But I think that that idea, and knowing that's how those people feel, just drives me to want to talk about it more. Because when I was diagnosed at 18 … I'm gonna make myself sound old, but I didn't have a smartphone, this was pre-Instagram.
Lauren: Listen, I grew up with a typewriter in the house. So you're doing fine.
Sam: There wasn't the same community that there is now, and I didn't know a soul in real life who also had Crohn’s. I felt completely alone. And I think that when we tell our stories, we validate other people.
I think that if you're someone who is not being believed, you will start to doubt yourself.
And so it's important for the rest of us to be out there telling our stories, and telling people that it's okay to tell yours. Because I think you compound the trauma of living with pain when you're forced to hide it and pretend it doesn't exist. It can make other people feel more comfortable, which, in my opinion, they should feel a little uncomfortable. Because I think that if they're too complacent, we're never going to get better treatment or more affordable care if people don't realize how serious and how prevalent this is. People need to know that they have close friends and family living with chronic illnesses. And if we don't talk about it, they don't know.
Lauren: Yeah, absolutely. I could not agree more. Have you been in situations that you could tell us about where you've been forced to justify your illness to other people, aside from early on with your family and being, like, “We need to take this more seriously.” Perhaps with doctors or employers or friends that just didn't get it?
Sam: Yeah, in 2018, when I moved to DC, the timing was really just almost exact, a couple of months after I moved here, I started inexplicably fainting. I moved here in April, and I don't know if you or anyone who is listening to this has been to Washington, DC in the summer. It’s very hot and very humid.
Lauren: Yeah, it ain't fun. It's when it reminds you it's in the South.
Sam: The Swamp Thing is a weather thing. And so I kind of just chalked it up to, I don't deal well with humidity, I don’t deal well with heat, this is why I'm painting. Then it was happening a lot. Even if I wasn't fully fainting, I was constantly feeling like I was going to faint. And it was getting to a point that it was dangerous, because I live alone. Actually the first time it happened, I was on the National Mall, and I fainted at a Smithsonian. It was just getting to a point that it was untenable. And in addition to fainting, I started having some kind of scary neurological symptoms. I was having trouble coming up with words, which as an English major was really stressful. I was telling my sister the same story five times, and not remembering that I had told her already. So I told my gastroenterologist about it, because she was who I was seeing at the time, wondering if it was maybe a side-effect of my meds or what was happening. And she referred me to a neurologist and a cardiologist.
Lauren: Which is already anxiety-inducing.
Sam: Right. And so I went to the cardiologist, and, you know, he was just an older white man, a very nice clinic …
Lauren: Gee, I have a feeling I know where this is going … !
Sam: He has a nice clinic; I'm sure he makes very good money. He did not ask me any questions, did not ask me to tell him what was wrong.
He looked at my echo and said, “You're fine. Sometimes young women just faint.”
Lauren: Oh, my good God. Did you scream?? You paid a bunch of money to be stressed by your own anger.
Sam: Yeah, this is not the 1800s. We're not just women who faint for no reason.
Lauren: We're not hysterics.
Sam: And here's the thing, if my echo came back clean, that is fine with me. I just want doctors who are willing to have the conversation, ask some questions.
Lauren: Yeah, engage with you as a whole person.
Sam: Right, and not condescend to patients. And so that was wildly frustrating. So after that, I brought my sister with me to the neurologist so that I had some backup. And also, she could attest to the neurological symptoms. The neurologist listened to everything I said, did a full exam, and then said, “Has anyone tested your B12 levels?” And it turned out what was wrong was a very simple vitamin deficiency. But a B12 deficiency, if you don't catch it, gets really serious; it can cause fainting, it can cause numbness in your extremities, it can cause neurological symptoms. The B12 deficiency was related to the Crohn’s; I was not absorbing the nutrients in the way that I should. It was so frustrating because it was really an easy fix. I now get a B12 injections every two weeks. And it's like a night-and-day difference; I'm doing a lot better. It was so frustrating to me, because after having all of this done, and I had all these tests, and I'd seen three different doctors, I had $2,000 worth of medical bills that I wouldn't have had if people have listened to the whole story earlier on. And so, I think that is really frustrating.
Lauren: That’s a great example of where the system is working against us as well. If your doctor had taken more than 10 minutes, or if someone had listened more, been taught to listen … I mean, there's a million factors at play here.
Sam: And a lot of people don't have the privilege or the time or the money … not that I had the money, but I made it work. But a lot of patients don't have the time or the money, or the support, to go through a diagnostic process like that, and they give up. And if I had given up, that B12 deficiency could have gotten worse, and I could have had permanent damage. That's what's really frustrating. So I always tell other patients if you're in an appointment, and you’re, like, “Hey, I'd really like to do this test, because I think this might be wrong with me. And I'd love to do this test.”
And the doctor brushes you off and doesn't want to do the test, a fun trick is to say, “Can you make a note in my chart that you've refused to do this test?”
Lauren: Such a good note.
Sam: Nine times out of 10, they will do it because they don't want it on the record that they refused you. There is an issue with over-testing. I don't think that everyone should have every test in the world done. But I think that's a good way to set the tone with a potentially dismissive physician that you're not here to mess around.
Lauren: And this is your health and you're in control of it, not them.
Sam: Exactly. Another tip that I tell people … like I said, I bring my sister to appointments, because she’s who I have available to me. But there is data to support that if you bring a man with you to appointments …
Lauren: Yeah, and specifically a white man, usually. So you can bring your dad.
Sam: Which is very frustrating. It's frustrating for single people like me, it's frustrating for the LGBTQ community. And it's just frustrating in general.
Lauren: And it reinforces this patriarchal BS that our whole society is built on anyway.
Sam: Yes, and I shouldn't have to have a man with me to be taken seriously by a medical team. They should believe when I tell them about my symptoms. There's actually a really excellent book that I read a few years ago, probably two years ago now, by Maya Dusenberry called Doing Harm. It will put you into a full rage to read it.
Lauren: The statistics with regard to these kinds of discussions are maddening. But it's so important that we know about them so that we can act on them, isn't it.
Sam: Yes, and it is absolutely enraging. But that book was a real eye-opener for me that women wait longer in ERs with the same symptoms as men.
If a woman comes into an ER, with chest pain, she'll wait over an hour, whereas a man will wait 45 minutes.
Lauren: And she’ll be sent home with Tylenol.
Sam: Exactly. And also, just the fact that … I could talk about this for days … but just the fact that when we're taught what the symptoms of a heart attack are, on posters and whatever … those are the symptoms of a heart attack in men. The symptoms of a heart attack in women are very different.
Lauren: Yeah, that medical research is skewed toward white males.
Sam: Absolutely. And it wasn't even until the ‘80s that the NIH demanded that women be included in research studies. So it’s just this real rabbit hole of horrific statistics, if anyone feels like looking them up. Smarter people than I have written about it extensively. But I think that it is a real issue, and specifically for women. But even more so for women of color, and poor women. And I don't think it changes until we admit that it's an issue.
Lauren: Absolutely. Speaking of all of this discussion of bias in the medical system, you brought up that in a few instances, you recognized your own privilege in your treatment plan. Do you think that at any point along the journey you've experienced undue prejudice or privilege in the health care system — particularly because you identify as a white female? Can you see your circumstances being different if you presented otherwise?
Sam: Oh, absolutely. And I think also the fact that I have learned over the years to just be incredibly adamant about getting what I need. And I think that because I work adjacent to healthcare, I have a knowledge base that other people maybe don't have. And it is deeply frustrating to me that you have to essentially have a PhD in navigating the health system to get anything done. To get things covered by your insurance, or to not be a victim of surprise billing, or to not go bankrupt because you have a chronic disease. I feel that I have a bit of privilege in terms of … because I was able to get a college education and kind of worm my way into the work that I do … I definitely have a better standing than a lot of patients. And that's always why I yell so loud and fight so hard — because I always think, if this was so hard for me, imagine how hard it is … I mean, I had a day that I had to be on the phone with an insurance company for probably six hours to get a treatment.
Lauren: That’s not unusual, either.
Sam: No, and to get the drugs approved that I needed. And it was at the doctor's office because I arrived and they said, “You can't get your infusion today, the insurance won't cover it.” And so I'm sitting there thinking, I have this really understanding workplace. But what if I'm an hourly paid worker? Or what if I'm someone who's paying for child care while I'm at this infusion, and suddenly I'm gone for six hours, because that's how long it took to get insurance to cover my infusion. And like we were talking about earlier with biologics, you can't skip a dose, you can't be late on a dose; you need it when you need it. And so for insurers to mess around with that is very frustrating to me.
And it's always those hourly workers and those moms who need child care and people like that, that I am fighting for.
Because like I said, if it's hard for me, it's a million times harder for them. And someone who has that privilege needs to be wielding it in a way that will help them.
Lauren: Absolutely. So why don't you tell us about Patients for Affordable Drugs, and specifically about the work that you guys are doing to not only raise awareness of changes in drug pricing and availability in this country, but also to push for greater availability and better pricing for patients?
Sam: Like you mentioned at the top of the episode, I am the digital director for Patients for Affordable Drugs. By a lucky turn of events, I saw that they were looking for a digital director; I was a digital director! I was smitten by the idea of getting to work in advocacy full-time, instead of just doing it at night as my “side hustle”.
Lauren: Unpaid side hustle!
Sam: Exactly. And so I was thrilled to get this job. P4AD was started just in 2017. So we're still fairly young, but we are making a lot of waves for a young organization. Our founder, David Mitchell, he has multiple myeloma. He had this really great career in Washington before his diagnosis. Then after he retired, he was diagnosed with multiple myeloma, which is a rare blood cancer. And much like with biologics, David's cancer is incurable, and so he is fully dependent on the development of new drugs. Because his cancer will find its way around drugs. And so the drug that's working for him right now, in a year, it could stop, and then he'll need another one. And so David understands, I think all of us understand, how important it is to keep researching and keep developing new drugs. But he also understands that … it's turned into kind of our slogan, but it is fundamentally true … that drugs don't work if people can't afford them. There's no point in research and development on a drug if the people who need that drug don't have access to it. And so there has to be a happy medium between the amount that drug companies are spending on research and development, and the amount they're charging for these drugs. Because it is unconscionable to me that we have pharmaceutical company executives who …
Lauren: I know where you're going!
Sam: It’s so hard because I do not begrudge anyone a profit. You are a company, you deserve to make a profit.
I think the issue comes in that they are making such an enormous profit that it is, in my opinion, immoral.
Lauren: Well, and they’re making enormous profits while the price of insulin, which is probably the best example right now, goes up 600% in a year. And people are eke-ing their medications out and dying because of it.
Sam: Insulin is a truly horrific example. There was a young man in Minnesota just a few years ago who was right on that cusp of turning 26. He turned 26. He was a manager of a restaurant. And he didn't have insurance because … I used to work in the service industry … I know how terrible it is when it comes to benefits …
Lauren: I will interject here and say there are a few employers in the service industry who are starting to actually provide health care. Which is awesome. There's usually like a little bit tacked on to the end of someone's bill. But the number of people who I'll go and eat out with who will be, like, “Why should I have to pay for this?” And I’m, like, “You're kidding, right? These people just gave you excellent service and put your food in front of you and didn't spit in it!”
Sam: Right. And they, just as much as anyone else, deserve to live and to have access to their medications. And Alec, he was the restaurant manager, and because he didn't have insurance … I believe he was biding his time, he was going to get insurance, but he was saving up first. He was rationing his insulin and he passed away, because rationing your insulin is a very dangerous act that people only do when they're desperate, and they truly have no other choice. He didn't need to die. I think that, to me, is the key to all of this. Like I said, I don't begrudge anyone a profit. But pharmaceutical companies will make the argument that if we lower drug prices, they will not be able to spend money on research and development.
Lauren: But then why does your CEO take home $200 million in profit?
Sam: Exactly. And it's just fundamentally untrue for two reasons. One is because all you have to do is look at CEO salaries to know that they could make some cuts. And two, I believe the number is 9 out of 10 major pharmaceutical companies spend more on marketing and advertising than they do on research and development. If they took money out of the budgets that they use to put a million drug commercials on …
Lauren: And that’s interesting one, too, because there are countries where advertising pharmaceuticals is illegal. And for good reason.
Sam: Actually, every country in the world except for the United States and New Zealand have outlawed it. I don't know why us and New Zealand.
Lauren: Also, New Zealand's also quite progressive.
Sam: Yes, I thought, that’s a little random.
Lauren: In every other way, they’re perfect!
Sam: Right. And so that is why it's so tough for me, because it's just a disingenuous argument.
It's the argument that we can't lower drug prices by a penny or these pharmaceutical companies will fold. And that’s not the case.
They could take money out of their advertising budgets, and still make a good profit.
Lauren: And nobody needs to take home what those CEOs are taking home, I don't care who you are.
Sam: Exactly. We fight against that rhetoric. There are no other organizations that are focused on legislation to lower drug prices that don't take any money from pharmaceutical companies. Like I said, I've had Crohn's for 10 years; I've only worked here for two years. I am very involved as a volunteer with the Crohn's & Colitis Foundation. I know there are a variety of other patient organizations that do wonderful work. I think they provide really important education resources and support groups, and things like that. But because they take money from pharmaceutical companies, they can't really weigh in on this issue. No matter how much it's affecting patients, they can't weigh in. And so David's thought process was, like, okay, these patient organizations are filling one void, we can fill the other. And so he came in and we got funded, and we now are able to bring patients to Washington, DC to tell their stories.
Lauren: You’ve, in fact, spoken in front of Congress, haven't you?
Sam: I have! It has been a wild couple of years. Just this past October, I testified in front of the House Ways & Means Committee on drug pricing, and actually got to drop some of the fun statistics that I just told you.
Lauren: Which is great. That's why you know them, right! Aside from the fact that, that’s what you do!
Sam: Right. Sitting in front of Congress is a little nerve-wracking, but that is why it really is so important to have actual patients speaking up. And that's why I love P4AD so much, and what we do, because we really are giving patients a voice. And not only that, we have patients here. David is a patient; I am a patient. Our community organizing director, Lauren, has Type 1 diabetes. And our communications director, Juliana, her son has cystic fibrosis. So this is very immediate to all of us. We didn't just come here because we wanted a job in DC. We came here because we feel very passionately about this. And we feel very passionately that patients shouldn't die or lose their home. We have patients who … maybe they haven't had to refinance their mortgage, but they're, especially with young people, they're just living in this constant fear that they depend … I mean, my quality of life is totally dependent on a biologic that works.
Lauren: And access to it.
Sam: Right. So I am terrified at the prospect of God forbid, losing my insurance, or being between jobs. I can't take the same risks as my healthy peers, you know; I can't take a year off to travel.
Lauren: Don’t Eat Pray Love on me, okay?!
Sam: Not that I could do that in general! I could be offered my dream job tomorrow, and I wouldn't be able to take it if they didn't have excellent insurance. It's a little bit of a moot point, because this is kind of my dream job! But that being said, if I were offered tomorrow to be like, you know, personal assistant to Ryan Gosling, or something, I couldn't do it.
To have insurance coverage and ability to afford my care and afford my drugs is the paramount concern of my whole life.
And I don't think that's how it should have to be for patients.
Lauren: And you mentioned that P4AD doesn't take funding from pharmaceutical companies. So do you think that part of your mission is to destabilize the power of Big Pharma in government? What's your stance on Big Pharma? Because obviously, they're also researching and creating drugs that a lot of us need, right. So you're not here to be, like, we hate Big Pharma.
Sam: Right. Like I said, David and I … literally, David needs the development of new drugs to live; he will die without new drugs. And so the importance of innovation is not lost on us. And the importance of what pharmaceutical companies do is not lost on us. I think it's just gotten so diluted by greed. There are small biopharma companies that are doing really amazing work. Another thing that I think people don't know, is that so many of the drugs that pharmaceutical companies are charging us for, were funded, at least partially, by taxpayers. So your taxes go into funding the National Institutes of Health, which then do a ton of the basic research on these drugs. And then that research is sold to a pharmaceutical company that can charge whatever they want for the drug that results from that research.
Lauren: There’s just no control on what they can charge.
Sam: Right. And so I think that's our approach, that we just want reasonable regulation around what they're able to do. People would not accept this kind of behavior if it were a utilities company. If they could charge whatever they wanted for electricity, people would be rioting in the streets.
Lauren: I would be investing in candles!
Sam: We try to harness the energy of the patients who know what a serious issue this is. A lot of them are folks who live in rural areas, and they don't have a platform. We've flown patients into DC, and this is the first time they've ever flown on an airplane. And so we're trying to give a voice to people who otherwise wouldn't have one. Because I think that all too often in health care, the people who are doing the talking are people in extreme places of privilege. And so we try to give a voice — whether that is a blog post about your story, or testifying at your local state capitol, or in front of Congress. I am far from the only patient who has testified in front of Congress on behalf of P4AD. And so we want to make sure that legislators and people at pharmaceutical companies and stakeholders everywhere understand that this is real and it's happening to their constituents. People are dying, people are really suffering. And there's no reason for that to be happening. While AbbVie, the company that makes Humira, which is a very popular biologic used to treat Crohn’s, arthritis, psoriatic arthritis, a variety of things … AbbVie makes more money on Humira than the revenue of every NFL team combined.
Lauren: Oh my goodness!! And we already know the NFL is trumped up.
Sam: Right. And so that, to me, really puts in perspective just how out of hand the profit margins have gotten. We're not asking for these people to volunteer their time to develop these drugs. We're just asking for a fair shake for patients who have no choice but to buy these drugs.
This isn't a situation where you can shop around.
If your doctor tells you you need this drug … Inhalers are a situation where people are being price gouged. And that's literally life or death, your ability to breathe.
Lauren: You see it a lot also with HIV drugs. I mean, that was a pretty famous case with Martin Shkreli. And even with PrEP and things like that, preventive drugs as well.
Sam: There is … I'm trying to remember which drug company this was …
Lauren: Call them out! Call them out!
Sam: There is a new drug on the market already called Truvada. That's a prep drug for HIV. And Truvada is about to run out of its patent, which means generics can come to market, which is how the system is meant to work. You're meant to make a good chunk of money while you have exclusivity. And then once your exclusivity ends, other people can come in; it drives down the price. That's ideally how the market works.
Lauren: But in our world, it sometimes drives up the price!
Sam: And that's the thing, too … some of these drug companies, they will get around patents by just changing the color of the pill or changing it from a capsule to a tablet. And so that's always what I try to get across to people when they’re, like, “But the pharmaceutical companies need to make money.” And I think that some patients, they've gotten the messaging so hard from pharma, that they're afraid. They're afraid to speak out because they don't want to lose what could potentially be a cure for their illness, or a new medication.
Lauren: Because we also know how much money is behind pharma, and how much of that goes into their legal …
Sam: Oh, they spend millions on lobbying every year. And so we kind of see ourselves as the counterweight to pharma’s influence. Pharma has had influence in Washington for years and years and years. And patients have never had a voice. So we are trying to provide that voice.
Lauren: Yeah, and it's a strategy that also works because as you've said a few times in this interview, sharing stories and giving patients the platform to do that is exactly how we not only validate within our communities, validate ourselves … but also how we show others that what's going on is real.
Sam: Absolutely. And before I worked here, I also think I thought that fighting for lower drug prices or fighting against pharma is a losing battle. But now that I work here, I'm actually more optimistic than I ever was before.
Lauren: That’s extremely good news.
Laws are being passed on the state level across the country because I think states are tired of waiting for the federal government to act.
Like I said, there are so many shady tactics being used, and there are laws that are targeting those individual tactics that are being passed. When I testified in October, I was testifying in favor of a bill called HR3, and HR3 passed the House of Representatives in 2018, before the year ended. It is stalled in the Senate, because that is how governing works!
Lauren: But that's where you have to follow the money trail, too. If something is stalled in the Senate, it's probably because there are people being paid by Big Pharma, who are in control in the Senate. I mean, let's be real about this. This is exactly the discussion that we're having on political stomping grounds right now, with the presidential election coming up. You just have to follow the money to know exactly why people are making choices that don't perhaps help their constituents but actually help themselves — because they're being paid off.
Sam: Yes. And I think it's so important, because we're at a really unique time right now, where I think legislators are starting to understand that people won't accept this anymore. And it has reached a bipartisan fever pitch, where people on both sides … I always say, regardless of my personal political views, there are Democrats that are good and bad on drug pricing, and there are Republicans who are good and bad on drug pricing. But I do think that legislators are realizing more and more that people just aren't going to put up with it anymore. So many people are on medication that they need, and it is unacceptable, and people are really starting to speak out.
Lauren: Well, and I think it's also that realization that we're all going to need medical care. We're all going to need to use the system. Whether we'll have to be medicated …
Sam: It’s a foregone conclusion.
Lauren: It’s a foregone conclusion for most people that you're going to end up on something or needing something. And if you wake up and start taking care of people now, then you won't have to worry when you're older, too. Taking care of everyone else is just as important as taking care of yourself.
And I always tell people, you are one diagnosis, one day away, from being in the shoes of patients like us.
I think that people don't often realize that it could just as easily happen to them.
Lauren: So, in terms of the way that drug pricing and the role of Big Pharma is playing out, as well as our healthcare system in general, the presence of insurance companies, for example, here in the US … we know that there are a lot of ways in which things are not working. And there's a lot of positive change happening, that you guys are at the forefront of. Are there ways in which some of this stuff is working for patients? It's not all bad news, right?
Sam: Like I was saying earlier, I am really emboldened by the younger generation, and not only how open they're willing to be, but also just that they are not willing to accept what is so blatantly unacceptable. I think that for a long time, people just got complacent. And were, like, this is just how it is.
Lauren: And this younger generation are going, like, This isn't how it has to be.
Sam: And I love it, I love to see it. And so I think that is a net positive for patients — because even if you maybe don't feel comfortable speaking out, there are people who are speaking out for you. And they're trying to help. And I also think that as much as I could talk for days about medical biases, I have also been lucky to have some truly amazing medical professionals in my life.
Lauren: We have great doctors here. It can't be denied. When we find a good doctor, they’re extremely good.
Sam: I have my physician as well as my nurse practitioner at my gastroenterologist. Both of them are excellent because they feel like detectives. They'll have notes, they have all these things prepared. I never feel like I'm being dismissed. They listen, and they don't give up and I think that's key for medical professionals — you’re not going to be able to solve every mystery. Sometimes the science just isn't there yet. But I think it's so key to just talk to patients like they’re people. I would rather have a doctor sit me down and say, “We don't have an answer for you. But we believe you …” than let egos get in the way and let them think to themselves, if I can't find it, it doesn't exist.
Lauren: Absolutely. And you're not the first person to say that on the show. I think that's a quite a prevailing opinion, actually, that we'd all rather be believed. And the good doctors are the ones who, go, “You know, I don't know, but maybe this person will, so why don't you go see them?” It's that total removal of ego; it works for everyone in very positive ways.
Sam: And there's just so much that we don't know. And I think that being able to admit that is important.
It wasn't until the 1900s that people even considered that autoimmune diseases could exist.
Because initially, the doctors and the scientists who brought forth the idea of autoimmune diseases were laughed out of the room. Because everyone was, like, “Why would your body attack itself?”
Lauren: Yeah, heaven forbid!
Sam: Right. And I think it's about an openness and a sense of curiosity and realizing that we don't know everything, that the medical system does not know everything. We are constantly discovering new illnesses, new symptoms, new treatments.
Lauren: There are illnesses we know of now that we still need to dig deeper on.
Sam: Exactly. Like I said earlier, they don't know why Crohn's patients in remission have such bad issues with fatigue; they just don't know. And I think that there are diseases that specifically affect women that are not very well researched. I have had issues over the years with chronic migraine, and that affects mostly women, and that is not very well researched. Endometriosis is a horrific example. There are just no resources.
Lauren: And we need to see a sea change in the way in which we're researching as well, don't we.
Sam: Yes. And I think, truly, all of it does come down to an openness and a sense of curiosity and a willingness to admit that we don't already know everything.
Lauren: And a willingness to admit that we've operated under bias, that we've operated with preconceived notions about what the body is. It’s always been a white male body. The research is so limiting. And that's not even the largest part of the population. We need to be researching women more, we need to be researching people of color more; we need to be adding all of the population and the way it looks demographically into our research.
Sam: Right. And I think a lot of women and a lot of women of color are dealing with feeling a bit gaslit by the idea …
Lauren: A bit!
Sam: By the idea that sexism and racism in medicine aren't as prevalent as we think it is.
Lauren: Oh, they are!
Sam: And not even just in medicine … in politics, in every area of life. People tell me, “Oh, it's not that bad. It can't be that bad.”
Lauren: Oh, it is!
Medicine specifically shows statistical sexism and racism, with data to support that.
Lauren: Look at the mortality rate among Black mothers. That's the easiest statistic to go to, to see that sexism and racism are alive and well, and that we need to combat them.
Sam: Yeah, I have heard that Washington, DC is the most dangerous place in America for a Black woman to give birth. And that is unacceptable.
Lauren: Shocking. Completely unacceptable.
Sam: We have to acknowledge that it's a problem before we can solve the problem. Too many people aren't willing to acknowledge it.
Lauren: Well, that's what you're trying to change in the work you're doing. Another one of many reasons, but it's another one why it's so important, the work you're doing. So, we're coming to the end of things here. I don’t want to because I want to keep talking about everything.
Sam: I obviously could talk about this forever!
Lauren: I know. Well, we'll have to have you back on to talk about this stuff. You mentioned a few tips for patients while we've been chatting, and I'm wondering what your Top Three Tips might be for someone who maybe is living with a chronic illness? Maybe they're waiting to be diagnosed, maybe they've got a Crohn’s diagnosis. What are your Top Three Tips for people who are living in this world of invisible chronic illness?
Sam: That is an excellent question, because I wish that I had this podcast when I was 18.
Lauren: So do I! (laughs)
Sam: But I think the number one thing, which is something we've touched on in this conversation, is just that you are your own best advocate. You know your body best. Don't doubt it, no matter how much you might be tempted to doubt your own mind and your own symptoms.
Lauren: Or told by other people to doubt your own mind.
I think it comes down to the idea that: if you don't advocate for yourself, who will?
No one is going to fight harder for you than you. And it's frustrating that we have to do this much work. And we have to spend countless hours on the phone with insurance companies. It makes me want to scream, but it is true.
Lauren: But there are those of us who are actually on the ground fighting to change that right now. So that's the good news.
Sam: Yes, that is the good news. I think probably the biggest tip that I would give someone newly diagnosed, or someone who's fighting to get a diagnosis, is to seek out mental health care. Because I was not told that early on in my diagnosis. And I think that I had a lot of mental health crises that I could have avoided if I had known. I mean, being diagnosed with an incurable illness that you're going to have for the rest of your life, when you're 18, is cruel. And it is a lot to take in. I think that in hindsight, I’m, like, of course, I would have developed issues of depression and anxiety around that … of course. But at the time, you don't think that way. And no one in my life was telling me that. And so I just felt like a failure. So I think that's the number one thing that I always want to get across, especially to younger folks, is you're not a failure. It is very normal that you're feeling this way. And you should find an excellent therapist, and some antidepressants maybe, and make sure that is part of your care team.
Sam: And I think the third piece for me is just finding a community. Like I said, I didn't know anyone when I was first diagnosed. And since then, I have gotten super involved. The Crohn's & Colitis Foundation does a walk every year. That's a great way to get to know people. I am a camp counselor, for a week every summer, at Camp Oasis, which is a camp for kids with Crohn's and colitis. Truly the best experience of my life. The kids are amazing. And it's also been a great way for me to meet peers, because of other counselors and things like that. There are local foundations for various illnesses that do happy hours and support groups. And if nothing else, you can find people online. So I think that finding other people who understand what you're going through, to some extent at least, is a game-changer.
Lauren: Absolutely. So the last Top Three list is, Top Three things … we know you've had to make some lifestyle changes, post-diagnosis, and work around potential symptoms and flares. So this list is Top Three things that you're unwilling to compromise on. This could be Top Three guilty pleasures, secret indulgences, comfort activities, when you have a flare-up, but Top Three things that give you unbridled joy, that you're doing no matter what,
Sam: I love a guilty pleasure. They're my favorite thing! I would say that … probably a lot of people will shake their heads at this … but one of the things I am not willing to compromise on is being active on the Internet. It can be really bad for your mental health. But it can also be really great. I think, especially for the folks we're talking about who live in maybe more rural areas, and don't have access to support groups or things like that in person, you can find other folks. Literally, the chronic illness hashtag on Instagram has like 3 million posts and counting; it’s constantly being updated. And I think there's a caveat with that — obviously, you have to be really careful, because there are a lot of people online who will try to take advantage of sick folks to make money, pyramid schemes and all that good stuff. There's also disinformation. So I wouldn't advise anyone to take medical advice from an Instagram post. But I do think it is a good way to … I have folks that I met through social media in 2016 when I was really sick, that I've since met in person — and consider them very good friends, across the country. And so I think that as long as you do it responsibly, and you curate your feeds, so that it is good for your mental health, I think that those can be excellent resources for people.
Lauren: The invention of the meme has been such a gift. I thought to myself, especially over the last few days because we're chatting soon after Super Tuesday … the Internet has been delivering some beautiful gems, especially on Twitter. So I can see where it’s, like … yes, curate your feed. But also, when there's funny stuff that makes you laugh, go for that funny stuff.
Sam: To be able to laugh. There's a Carrie Fisher quote … I love Carrie Fisher, she's excellent.
But there's a Carrie Fisher quote that's like, “If my life wasn't funny it would just be true — and that's unacceptable.”
I think it is important, especially among the Crohn's and colitis community … I mean, you have a disease that it is seen by many people as gross. And so to be able to laugh about it and joke about it is …
Lauren: Oh, poop jokes are the best jokes!
Sam: The best jokes! It can’t be denied. To be able to be real about that and laugh about it and talk about it is vital to my mental health. And then my number two item is my cats. I have two cats.
Lauren: I’ve got one. We're both cat ladies!
Sam: Excellent. I never intended to have two. And here I am, a person with multiple cats. Obviously there are barriers to this if you have allergies or things like that, but I truly believe that every sick person who can should have some sort of pet. I'm a big supporter of cats, because they're incredibly low maintenance. I think with my flares, if I had a dog, I would have a hard time getting up to take the dog out at 5 in the morning.
Lauren: That’s a really important consideration, yeah.
Sam: Yes, I think you have to be realistic about what you have the bandwidth to care for. But at the same time, my cats are amazing. They know when I'm sad. They know when I'm sick, they will come lay on my stomach.
Lauren: They show up. They always do. They happen to know where it hurts the most. And they show up on it.
Sam: I know, they're angels. And so I think that that has been great for my mental health.
And it's a great reminder that even when your body is failing you, you can take care of something else.
Like, I’m keeping two cats alive.
Lauren: Yeah, at least a cat.
Sam: Maybe not a kid, but a cat.
Lauren: And they're gonna get better medical care and food than we do. Because that's what happens when you adopt an animal. They’re a baby.
Sam: I know, I always think it's kind of funny when people pour a bunch of money into a vet visit for an animal. And then a few months ago, my cat swallowed a string and in the cab on the way to the emergency vet, I was, like, I will take out another credit card; I will do whatever I need to do to save this cat.
Lauren: I’ve been there. I know!
Sam: That is the big thing. But I think additionally, for me, my third thing would just be my best friends. I am a very lucky person that I've had a lot of best friends since I was about 10 years old. I have collected some more very close friends along the way. But a lot of them have known me since before my diagnosis, or they met me right at the onset. So they've really been through it all with me. I think that the healthy people in your life aren't going to get it right 100% of the time. And that's important to know; you're going to set yourself up for disappointment if you expect them to always know the right answer. And know the right thing to say. But I think it's important and vital to me to have people who stick around, and you can tell that even if they're not always getting it right, they really care. They ask questions, and they want to know more. The biggest red flag for me in making friends as an adult is, if you start to talk about your illness and the person pulls away or changes the subject, I'm like, yeah, you're not a ride or die. You're not sticking around.
Lauren: It’s also a great way to know who really matters … talk about it and see who actually sticks around.
Sam: Absolutely. And so I have been very lucky to have a really core group of friends that even as I've moved across the country, we have group chats, we have FaceTime, and they really keep me sane.
Lauren: Yeah, that's really lovely. Well, Sam, can you tell us where everyone tuning in right now can find Patients for Affordable Drugs and get involved?
Sam: Yeah, so PatientsForAffordableDrugs.org is our website. We are on Twitter and Instagram @P4AD_ . Because there is a band in the UK that has @P4AD, and will not give it to us. It’s the bane of my existence as a digital director! If you're interested in getting involved, you can also find me on Twitter and Instagram @SammmReid, because I have a very common name. If you DM me, if you reach out to me, I am happy to walk you through the process of getting involved with Patients for Affordable Drugs and getting involved with advocacy. I've been lucky to bring some of my friends out here to advocate. And I think it is really just an amazing experience that helps you take some of the power back.
Lauren: Absolutely. I couldn't agree more. Sam, it's been such a pleasure chatting with you today. I don't want this conversation to end! It's just such a pleasure to get your perspective and the perspective of someone who's out there actively making change. It's so exciting. So, thank you so much for taking the time today, and I can't wait to talk again soon.
Sam: Awesome. Thank you.