What if samantha reid

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. 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. 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 …. 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.

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! 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. I felt completely alone. And I think that when we tell our stories, we validate other people. 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. I could not agree more. Sam : Yeah, in , 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.

Sam : The Swamp Thing is a weather thing. 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. 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. And so I went to the cardiologist, and, you know, he was just an older white man, a very nice clinic ….

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. Lauren : Oh, my good God. Did you scream?? You paid a bunch of money to be stressed by your own anger. 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. 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. 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.

And so, I think that is really frustrating. 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. And I'd love to do this test.

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. But there is data to support that if you bring a man with you to appointments …. Sam : Which is very frustrating. 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. 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. 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. 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? 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.

Sam : No, and to get the drugs approved that I needed. 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.

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. 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! And so I was thrilled to get this job. P4AD was started just in 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 ….

You are a company, you deserve to make a profit. 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 He turned 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. These people just gave you excellent service and put your food in front of you and didn't spit in it!

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. 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 …. 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. And so that is why it's so tough for me, because it's just a disingenuous argument. 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 year s.

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. Sam : I have! It has been a wild couple of years. Lauren : Which is great. That's why you know them, 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.

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. 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. 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. 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.

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. 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. 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. 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 …. 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. 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. 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. 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. 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. 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. 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 …. 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. 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.

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. 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. Sometimes the science just isn't there yet. 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. Sam : And there's just so much that we don't know. And I think that being able to admit that is important. Because initially, the doctors and the scientists who brought forth the idea of autoimmune diseases were laughed out of the room.

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. 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. 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. 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. And I think a lot of women and a lot of women of color are dealing with feeling a bit gaslit by the idea ….

Sam : By the idea that sexism and racism in medicine aren't as prevalent as we think it is. Sam : And not even just in medicine … in politics, in every area of life. It can't be that bad. 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. And that is 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.

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?

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 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.

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. 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. 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.

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.

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 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. But also, when there's funny stuff that makes you laugh, go for that funny stuff.

Sam : To be able to laugh. 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 …. Sam : The best jokes! 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.

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.

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. Lauren: And they're gonna get better medical care and food than we do.

Because that's what happens when you adopt an animal. 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.

They cleaned the apartment be-fore finally taking the girls to Oakwood Southshore Medical Center in Trenton.

The men told emergency room workers and police that the girls were at a house party in Ecorse and could only remember see-ing a black man working the door. The men could not identify the location.

Brayman, Holtschlag and Cole were found guilty in of involuntary man-slaughter and poisoning, and were sentenced to up to 15 years in prison. Limmer was convicted of being an accessory to man-slaughter after the fact and was sentenced to up to five years in prison. The Michigan Court of Appeals eventually dropped the manslaughter charges, but the Michigan Supreme Court overturned the appellate court decision and the sentences were re-instated.

Brayman, Holtschlag and Cole were eligible for pa-role in , but remain im-prisoned. If they serve their maximum sentences, they will be released in The foundation was formed to push legislation and to let the public know about the dangers of date-rape drugs.