Feb. 18, 2022

Meet the Healthcare Mafia (And How to Stop It)

Meet the Healthcare Mafia (And How to Stop It)
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Chronic disease patients often fall victim to high healthcare costs due to supply chain 'middlemen' otherwise known as Group Purchasing Organizations (GPOs). David Balat, Executive Director at Free2Care, discusses how eliminating kickback protections for middlemen can lower overall healthcare costs and lead to further transparency in the industry. Repeal of that protection, known as Safe Harbor, could also bolster innovation, increase competition, and reduce costs. 

Plus, hear from Terry and Dr. Bob as they break down this week's topics in healthcare policy to understand how chronic disease patients can have more accessible, affordable, and transparent care in the future. 

Field correspondent Kate Pecora also speaks with Erin Galyean, the Author of BadAss Advocate, on how to become a fierce champion for the person you care for. 


Terry Wilcox, Executive Director, Patients Rising

Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest

Kate Pecora, Field Correspondent


David Balat, Executive Director, Free2Care

Erin Galyean, Author of Badass Advocate 

Tomi Womack, Patient Correspondent


Badass Advocate 

Lowering Healthcare Costs through Safe Harbor Repeal | David Balat


Health Care Initiative | Texas Public Policy Foundation 

Free2Care | GPO's

FTC may probe pharmacy benefit managers

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David Balat (6s):
So who else does that as part of their business model? Well the mafia comes to mind for me, but they joined the Safe Harbor that was already in existence in 1987. PBMs were added in 2003, but it already existed.

Terry Wilcox (23s):
Today, a solution to lower healthcare costs. Getting rid of the protections that allow middlemen to operate in the shadows of the hospital supply-chain, can improve patient access, affordability, and transparency. How we get there, is up next. Welcome to the Patients Rising Podcast. I'm your host, Terry Wilcox, Executive Director of Patients Rising, a hundred-thousand member strong organization of patients with chronic illness. I'm here with my cohost, fresh from choreographing the lines for the barbecue and burrito stands, and I'm sorry - I still can't get over the barbecue and burrito stands and the bathroom, during the Super Bowl halftime show!

Terry Wilcox (1m 5s):
He's Dr. Bob Goldberg co-founder of The Center for Medicine in the Public Interest. So Bob, BBQ and burrito stands?

Dr. Bob Goldberg (1m 15s):
Yes, and I did wash my hands after doing the bathroom choreography as well, just to let everybody know. So yeah, it was a good way to see the Super Bowl.

Terry Wilcox (1m 27s):
It was very L.A. - It was so L.A.

Dr. Bob Goldberg (1m 30s):
Very L.A. By the way, what I was doing in the lines, was making sure the A-listers got to the front, and made sure there was double-ply toilet paper, instead of single-ply, for those guests. In any event, to the extent that I put in so much time and effort doing that, Terry, I put the same amount of time and effort into making sure that when we talk about healthcare policies on this show, we are diving deep into the things that matter most to our lovely audience.

Terry Wilcox (2m 4s):
Of course, access, affordability, and transparency are the three-main lenses through which we view health care here at Patients Rising, and today's topic encompasses all three. Middlemen in the hospital supply chain, also known as GPO's, or group purchasing organizations, have driven-up costs for medications, medical supplies, medical devices, and much more.

Dr. Bob Goldberg (2m 28s):
This happens, because there are regulatory protections that allow them to receive these kickbacks, and no surprise, leads to inflated prices, which are usually felt the most by patients.

Terry Wilcox (2m 39s):
That protection is known as the Safe Harbor, which protects other middlemen, like ones that we've talked about a lot on this show. Pharmacy benefit managers, allowing them to receive kickbacks, but it's a murky topic and it's not very transparent. It's one of the many things happening in the shadows of the supply-chain that can hurt patients access and affordability in the Act. To break all of this down, we are joined by David Balat, the Director of the Right On Healthcare Initiative at the Texas Public Policy Foundation. He shares details of an educational and advocacy movement underway to highlight this issue, and what all patients need to know. He joins us shortly, but first, this week's healthcare news headlines.

Robert Johnson (3m 26s):
In your health news, health departments across the country are running low on disease detectives. That's according to a new report from the Big Cities Health Coalition and The Council of State and Territorial Epidemiologists. The claim is based on surveys of health departments in 30 cities, where there were 177 openings for epidemiologists last year. That's twice the number of openings in 2017. An epidemiologist writing, and stat first opinion, says public health officials should be elected, not appointed. Jay Varma argues that would keep them both accountable to the public and independent from the interference they've endured from elected officials during the COVID-19 pandemic.

Robert Johnson (4m 7s):
Pharma advised former New York City Mayor, Bill De Blasio, on the city's pandemic response until May of last year. One of the world's oldest general medical journals, The BMJ, says the dangers of a mental health disorder, resulting from a COVID-19 infection, extend far beyond the actual illness. In fact, a study just published, says problems can occur up to a year after an infection. The authors want more attention paid to mental health and additional research to understand the risks to COVID patients. Cautious thinking, not old age, could be the reason older adults take more time to respond to questions on cognitive tests.

Robert Johnson (4m 49s):
A study in natural human behavior, considered the results of an online test taken by more than a million people. It finds older people took more time to respond to the questions, with answers that were more accurate, than those submitted by younger participants. The good news, mental speed doesn't dip until people are in their sixties. That's your health news update for this week, I'm Robert Johnson.

Terry Wilcox (5m 16s):
This episode is all about the middlemen in the drug and hospital supply chain. Some patients follow this issue closely, and some don't, so it might be good to do a quick recap. Dr. Bob, you've been our cliff-notes guide on health care lingo. Can you give us the quick and dirty on what a pharmacy benefit manager or PBM is?

Dr. Bob Goldberg (5m 38s):
I'll just give you the quick definition, because dirty and PBM go hand in hand.

Terry Wilcox (5m 44s):
Dirty scoundrels.

Dr. Bob Goldberg (5m 45s):
Dirty rotten scoundrels, and the language that could be used to describe them, but bottom-line is what a PBM, a Pharmacy Benefit Manager does. They decide what drugs people get, and how much they pay for those drugs for the insurance plans they're part of. In exchange for doing that, they receive rebates to reduce the cost of the drugs, not for the patients, but for the insurance companies.

Terry Wilcox (6m 11s):
They also play a big role in the high-cost for patients since they're allowed to conduct, what we're talking about today, kickbacks. There is more awareness of them now, than ever before. Interestingly enough, they're often not on lawmaker's radar when it comes to creating legislation to lower costs.

Dr. Bob Goldberg (6m 31s):
There has been more talk in Congress, and in the news of course, but not a lot of action to address it. That might be changing. The Federal Trade Commission has debated taking a look at the role of PBMs, and drug costs, especially as they've been quietly consolidating over the past several years. I think somehow there all of these consolidations and we, as patient-advocates, looked at this happening. They're just becoming these huge conglomerates where all of a sudden you see CVS, United Healthcare and the Fortune Five, right? They're like the biggest companies out there.

Terry Wilcox (7m 8s):
They will emerge.

Dr. Bob Goldberg (7m 12s):
The PBMs are basically taking over the insurance companies - CVS Caremark, then there's Express Scripts, part of Aetna. Not only do they have 80% of the market of all the drug benefits, they also have a large chunk of the insurance market as well.

Terry Wilcox (7m 30s):
There was only one person at the FTC that actually said, maybe this isn't a good idea, and that was Obama's FTC Director. Everyone else sort of let these things come on through, and now it's like alarm bells are going off.

Dr. Bob Goldberg (7m 47s):
I think it just emphasizes the spread, and the rebate thing is important, but the distortion of the benefit design. The focus is on keeping the net-cost of the drugs low, so when a patient needs a more expensive medicine, that might not be covered, the patient will pay the list-price, whereas the PBM pays the net-price.

Terry Wilcox (8m 16s):
Right - They'll pay whatever co-insurance they're owed. To make it really clear, whatever co-insurance they're owed, they are paying that off the list price unless they have a savvy employer, who's worked something else out. For the most part, they are paying-off the list-price that's wireless price is important. We often say list-price doesn't matter, and in some circles it doesn't matter, but it does matter. These PBMs in these mergers are kind of what has risen and it has caused all of these prices to rise. It's not benefiting patients at the end of the day. Those are the people that are losing-out, and we're spending an extraordinary amount of time in this country talking about the cost of drugs, then not talking about the benefit design crisis that we are living through as a nation, because we are.

Terry Wilcox (9m 8s):
Until we start talking about that - Until we start creating healthcare policy and policies on Capitol Hill is in State Houses around benefit design. This isn't an organization that receives funding from pharma saying this, because we are trying to protect pharma - Pharma can't do this alone, is the point. Pharma alone can't fix what's wrong, so therefore, if we're not talking about benefit design, we're not having a real conversation about helping patients. We're just shuffling money around and playing blame games. So with that, let's get into the focus of today's episode, which is the laws and regulations that protect middlemen within both the drug and hospital supply-chain.

Terry Wilcox (9m 48s):
There's a growing movement to revisit, and I love this, because it's very hard to do, because it's ERISA! There's a growing movement to revisit and repeal the Safe Harbor, which allows middlemen, like PBMs, to receive kickbacks. What exactly is Safe Harbor? David Balat, of Texas Public Policy Foundation, breaks it down for us here.

David Balat (10m 11s):
There is a lot of talk in the press about what the PBMs are doing to patients. I use that very intentionally, "doing to patients", because it really is shameful how they're treating the people who are in the most need. Why did PBMs get to the place that they are in? They got to the place of power that they're in, because of something called a Safe Harbor. A Safe Harbor is basically an exception that should lead you to ask the question, an exception from what? Wrap your brain around this. The exception is from the anti-kickback statute, which basically means, they have been given license to conduct kickbacks in the course of their business.

David Balat (10m 53s):
Now, who else does that as part of their business model? The mafia comes to mind for me, but they joined the Safe Harbor that was already in existence in 1987. PBMs were added in 2003, but it already existed. Who did it exist for? It existed for group purchasing organizations.

Terry Wilcox (11m 18s):
Now we've talked about PBMs before on this show, but group purchasing organizations, which we'll be referring to as GPO's, are another middleman that we haven't touched on and here's how David explains their role.

David Balat (11m 31s):
They really did serve a purpose as a PBM, at one point. They used their leverage. They used their buying power to negotiate down the cost of drugs and group purchasing organizations started off that way. Kind of like a Walmart. They would buy, and they were a middleman, but you know, they would provide real value. As they were able to benefit from these kickbacks, they really did enrich themselves, and a lot of other people along the way. It drove the cost of medications, supplies, medical devices, anything a hospital buys. It drove the price up and up and up.

David Balat (12m 15s):
These Group Personal Organizations, through their sole-source contracts or dual-source contract, or different machinations that they have through contracting vehicles, they're able to control and manipulate, supply and demand. That's why we're continuing to see things that have been used in healthcare, and in hospitals, for decades - In some cases, close to a century, and for some reason, the costs are going up exponentially.

Terry Wilcox (12m 41s):
It's absolutely true. It's true in the GPO setting, with very simple things, which we'll highlight here in a minute, like saline. You heard about this at the beginning of COVID, Bob, 'Don't wear any masks, because we need the PP. We need the protective gear for our frontline workers. No, do not wear masks!" Wish we can go back to when they were ordering me not to wear a mask. Like, "Do not wear a mask!". Those are the types of things - It's everything from your basic ibuprofen, aspirin, saline, and very simple medications, to the masks. All of those things can be driven-up by the GPO's, just like we see the PBMs driving-up the cost of insulin.

Terry Wilcox (13m 27s):
Demanding further kickbacks is exactly what they do in rheumatology medications. That's what they do. That's their job. Their job initially was supposed to be, we're going to save you money to the hospital, or to whoever. The insurance plan or the employer, whoever they're engaging with, but that's not really the truth. They have secret contracts. You actually don't know what they're making.

Dr. Bob Goldberg (13m 53s):
Right - There are some older estimates about how GPOs and PBMs save money, but it saves money for their customer, which is the government. Meanwhile, patients are still not seeing the benefit of that, because they are paying - Mostly it's the spread of medicines, but the spread between net and list for other products as well.

Terry Wilcox (14m 12s):
One of the best ways to understand this issue is to take an example of a hospital product that has fallen victim to GPOs and their kickbacks. Here's part of my conversation with David, where he shows this in action.

David Balat (14m 31s):
In say, 2016, sodium chloride, salt water, saline packs were 81 cents per vile. A year later in May of 2017 until today, it's $4.82 cents, so it increased by $4.00 - 495% increase.

Terry Wilcox (14m 49s):
That's insane.

David Balat (14m 49s):
The GPOs take a percentage. They don't get a set fee, they get a percentage of the sale. So they're not benefiting from the value to the hospital, they are benefiting from how much they can get that hospital to pay.

Terry Wilcox (15m 4s):

David Balat (15m 5s):
It's a perverse incentive.

Terry Wilcox (15m 7s):
It's a perverse incentive. I mean, very much like the PBMs or even the guys who sell you insurance. There's a perverse incentive for doing something, and it's not in the favor of the patient, is what I always say. It's not to support the patient or the end-user of the product.

David Balat (15m 25s):
Yeah. Yeah. Which is why fruity care has been so engaged on the Safe Harbor issue - On this kickback issue, as I prefer to call it, because it is patently anti-patient and it is costing more in keeping patients from going to the hospitals. Keeping them from getting the care that they need. It's having them throw their hands up in the air - Something that you all see a lot of, because I know you advocate for a lot of patients that are so frustrated by the system, but they say, "I just give up!".

Terry Wilcox (15m 53s):
Well, that's true. I can tell you that's absolutely true. Many patients hit roadblocks and they just don't know what to do next. That's one of the things we do at Patients Rising with helping folks learn to advocate for themselves, or navigate some of the nonsense that they have to sort of have to sift through. I know you help people as well, and it's just trying to figure it out and can be complicated.

Dr. Bob Goldberg (16m 20s):
Yeah. Why people are paying thousands of dollars for a drug that is probably generating probably 90% of it is rebates. That's the case with many diabetes drugs and the Group Purchasing Organizations also receive the rebates as do the PBMs. Again, just to emphasize, GPOs are the middlemen for the hospitals and other kinds of facilities, where the PBMs are the middleman for the drug coverage for Medicare Part D or for your drug coverage. In both cases, their ability to create kickbacks is sanctioned by the Safe Harbor exemption to the anti-kickback statute.

Terry Wilcox (17m 4s):
Right. They are actually kickbacks. It is an anti-kickback statute. That's actually what they are called -kickbacks.

Dr. Bob Goldberg (17m 10s):
So there you go.

Terry Wilcox (17m 11s):
So we can call it kickbacks all we want, because that's exactly what it is. We wrapped up our conversation on the overall impact this repeal of Safe Harbor would have on patients. It would have not only patients, I argue, but Americans - Everyone, which would be lower-costs across the nation. I want to say one more thing about David before we kick this. David is also the Executive Director of the Free to Care Coalition, freetocare.org, which Patients Rising is a member of. They're sort of spearheading this whole initiative on the Safe Harbor issue. Definitely want to link to that in the show notes, because David is also the Executive Director of that.

Terry Wilcox (17m 54s):
Now here's David on how the overall impact this repeal would have on patients.

David Balat (18m 0s):
Would it bring down the cost of goods that go into the hospital? Absolutely! Something else that we're working on, would need to occur as well. As you know, we have been at the forefront of the hospital price transparency effort. We have to have hospitals showing their prices as well. So as we see the price of goods and medications decreasing because of our work, and when we get this thing done, we need to see that translation of the prices going down to the hospitals now that we're able to see them.

Terry Wilcox (18m 31s):
I can't agree more on that. The transparency piece is huge. Not only for hospitals, it's huge for everything. People should just be able to see what things are costing. I don't think we've done anyone any favors, least of all the cost of healthcare in this country, by having secret contracts and hiding prices.

Dr. Bob Goldberg (18m 54s):
No, it protects a racket. That racket generates nearly a quarter-trillion dollars in rebates and discounts to the middlemen, who in turn distribute it mostly to the payers and the insurers. Most of that money is coming from people who are chronically ill and are using new and more expensive medicines. That money, and we've said it before, should be aligned with the value of the drug for each individual patient, which means reducing that out-of-pocket costs and reducing that barrier. One other thing, sort of a mini rant here, Terry, let these organizations get paid for helping patients. They're spending all this money on data and I don't see anything coming out.

Dr. Bob Goldberg (19m 35s):
There are some rare exceptions, of course, that identifies the right drug for the right patient at the right time.

Terry Wilcox (19m 46s):
Absolutely. I think that's a huge part of the future. It's one of the things that we're working on as well.

Dr. Bob Goldberg (19m 59s):
No burritos for them.

Terry Wilcox (20m 1s):
No burritos.

Dr. Bob Goldberg (20m 1s):
No bathroom either.

Terry Wilcox (20m 2s):
More of my unaired conversation with David will be included in our weekly Patients Rising Newsletter, which you can subscribe to using the link in the show notes, and we hope you do. This episode, of the Patients Rising Podcast, is brought to you by Patients Rising Concierge, a new service from Patients Rising that helps patients and caregivers find the resources they need to find stability and support throughout their healthcare journey. From finding a professional advocate, to help with insurance challenges, to legal and tax counsel, to local caregiving resources and so much more, our team is standing by to help you navigate the healthcare system and connect you to the services you need.

Terry Wilcox (20m 59s):
To learn more, visit patientsrisingconcierge.org, or email us at askusanything@patientsrising.org. Our Patients Rising podcast, field correspondent, Kate Pecora continues to speak with patients, caregivers, and advocates across the country. Here's Kate's conversation from this week.

Kate Pecora (21m 9s):
Today, I'm speaking with Erin Galyean. Erin has a book out and we're going to talk about that a little later, but she's here as a patient advocate, who has come to share her story about what made her go into professional patient advocacy and public speaking. I want to get into the background that you have - The story that brought you into patient advocacy. Could you share a little bit about your experience? I know it wasn't necessarily yours, but you're the advocate in the background, so tell me about that.

Erin Galyean (21m 45s):
Absolutely. In 2017, my sister, Meghan, was diagnosed with three diseases. She had cancer, that caused an auto-immune disease, and an autoimmune disease, that caused a lung disease. The cancer, ironically, was the good news. It was curable, and within five-six months, she was cancer-free. The bad news was, the lung disease that was caused by the autoimmune disease, was very rare and very aggressive. Over time, it just took its toll on Meghan's body. So over 13-months, her body just deteriorated and she ended up passing away in October, 2018 at the age of 48. Meghan was my best friend.

Erin Galyean (22m 26s):
She lived halfway across the country in Charleston, South Carolina and I live in Texas. During her illness, I would do my best to fly back-and-forth. My mom was really her main caregiver. I wasn't the main caregiver, but I wanted to do whatever I could to advocate for her while I was far away. Of course, when I was there in person, I would take care of her and take over some things from my mom, her husband, or my brother. As background, my profession is being a pharmaceutical sales trainer. I've been in the pharmaceutical sales industry for over 20-years. During that time, I've learned how to effectively speak with physicians and how to ask them good questions.

Erin Galyean (23m 9s):
I'm not as intimidated by them, because I work with them all the time. For most people, speaking with a physician, being comfortable giving pushback, asking questions, or saying that I need to get a second opinion, can be intimidating and uncomfortable. So when my sister was sick, I did my best to advocate for her in different ways. Sometimes I could do it from home. Just simple things like sending emails to physicians to get second-opinions, being the go-to person between my family and our extended family, which is very large, or reaching out to my sister's friends, and letting them know what was going on.

Erin Galyean (23m 50s):
Taking that burden off my family of having to constantly give updates. So along the way, I learned these things. After my sister passed away, I decided that I have knowledge that helped me, and I could share this with the rest of the world, by writing a book and giving them a leg-up. Teaching something that I learned along the way, that they don't have to take 20-years in pharmaceutical sales to figure out. They can just read the book, and then they can do what I do, because none of it is difficult. It's very easy and I laid everything out very clearly.

Kate Pecora (24m 27s):
Erin, you've also created an accompanying journal. Both of these are great resources for people who are getting into their journey and learning about how to navigate healthcare considerations. Could you talk to me about creating the book and what people can do to learn between the book and the journal. We're going to link the titles of the books in our podcast's show notes description.

Erin Galyean (24m 47s):
It was emotionally difficult, because my sister and I were so close. I wanted to physically be there, but I didn't have a choice, because I have a family here. I had a two-year-old at the time, but I figured out ways that I could still advocate for her. One thing that I'll share, and that I share in the book, is I was missing out on those meetings with physicians. If I had lived close to my sister, I probably wouldn't have gone to every doctor's appointment, because I worked full-time. Like I said, I'm a working mom, but I would have been a part of more than I was. What I realized over time was, when my mom and sister would come back from these doctor's appointments, they couldn't relay all the information.

Erin Galyean (25m 29s):
There's no way to remember all of that. My mom is diligent about taking notes, but I've been a patient myself, where a doctor - I'm sure we've all been in that situation, even if it's not cancer or something serious - a physician tells you something and you walk away going, "What did they say?" " How many times a day should I take that medication?". You forget. There is a lot of information sometimes. When you have three diseases, that's a lot that you're dealing with. I asked my mom and sister, the next time you go, can you ask the doctor if you can record the conversation? My sister and mom both have iPhones. You can use any phone, because they all have a recording device, or you can download an app.

Erin Galyean (26m 9s):
This is one of the tips I give in my book and it's one of the best things we did. In the book, I share a morning routine, and I personally didn't use this routine, because I didn't think of it at the time. I wish I had, but I use this routine as a professional working mom. I thought this is something that anyone can use as a caregiver. If we give it the right spin, and the right information, caregivers can use this to powerfully advocate for their loved one. Whether you are like my mom, and you're the full-time caregiver, or someone like me, who doesn't do the day-to-day, but you're still going through an emotional time.

Erin Galyean (26m 56s):
The morning routine is called the Five R's. Basically, the idea is that you wake-up in the morning and you start off that day really strong. In the journal, it walks you through the Five-R's. The first one is 'Reflect'. When caregivers, or any family members going through this time, it's really important to start the day by reflecting on your thoughts and your feelings. It's a lot that you're dealing with, and sometimes we're so focused on the patient, that we forget about ourselves. I think it's important to take just a few minutes to write down whatever you're feeling. In the journal, I ask a different question every day to get you thinking through what you're dealing with. The second one is "Review", and this is really important. You review the patient's calendar and make sure that you're prepared for the day.

Erin Galyean (27m 40s):
You can do this at the start of the week, but I encourage you to do it daily, so you know what you're facing that day. You may need help. We all do it where we overbook ourselves, or we forget something, so it's great to do this first thing in the morning. You know, I need someone's help today, or I need to make sure I leave work at 3:00, because we have a doctor's appointment at 3:15. The third one is "Re-examine" and that's when you re-examine the patient's care. Hopefully you've been taking notes, and I'm going to talk about that too in the journal. As you're taking notes, and recording these conversations with doctors, there are times where you need to actually sit down, slow down, re-examine what's been going on and decide if you and the patient are going down the right path, or if there's a change that needs to be made.

Erin Galyean (28m 32s):
Sometimes we don't slow down enough to really think through that. We're rushing around so much. I think that's really important and maybe you need to follow-up. I mentioned with the recording, sometimes you pick-up questions that weren't asked at the moment and that's okay. Write them down and you can put them in the journal to save for next time. It's just re-examining what's going on and moving forward from there. "Reevaluate" is the fourth one, and that is the very first strategy I share is to create a support team. This is critical, because no one should be advocating for a patient on their own or caregiving on their own. I know this is easier for some, than others, to create a support team.

Erin Galyean (29m 13s):
Even if you can get help from a neighbor, or someone in the community, who's willing to donate time for free. If you have the money to pay for home-care, whatever you can do, get creative and try and get help, even if you can't get it from your family. When you are going through that, it is time, at this step in the process, to reevaluate what's going on with that support team. Maybe someone needs support themselves, so I always think of my mom. She was the main caregiver. Emotionally it was a lot taking care of her daughter and sometimes my mom needed a break. Maybe it was time to pay for a pedicure for my mom to get a break or anything like that. It could be a variety of things. Again, get creative and see who needs help.

Erin Galyean (29m 53s):
Maybe it's just emotional help and not something like treating them to a pedicure. The last one is "Recharge". In the beginning you talked about your feelings and your thoughts, you've gone though that. At the end, you're coming back to "you" again. This is all about taking time to do what you feel is best for you.

Kate Pecora (30m 11s):
Erin, thank you so much for sharing all this information, a little bit about what is in the book and what's in the journal. We're going to link it in the notes to this episode. People can go and see more about it and potentially look into getting it for themselves or for someone they love, who's going through a journey. hank you again.

Erin Galyean (30m 38s):
Thank you so much for having me.

Dr. Bob Goldberg (30m 40s):
Thank you, Kate. Up next is this week's patient correspondent.

Tanya (30m 44s):
Hi, my name is Tanya and I'm from North Carolina. I suffer from multiple rare vascular compressions called Median Arcuate Ligament Syndrome and Superior Mesenteric Artery Syndrome also known as MALS and SMAS. When navigating my journey, I realized how corrupt our medical system was when it came to young women. Doctors tend to misdiagnosed young woman with psychological issues and eating disorders, when they have any issues revolved around eating, and their first test doesn't show answers. Doing this, they're causing more damage than helping, by prolonging the current medical diagnosis to be able to receive proper treatment. Imagine being in so much pain and the doctor you thought that was supposed to help you tells you it's all in your head or you're doing this to yourself.

Tanya (31m 28s):
That alone, causes damage. Some aren't taken serious about their illness until it's too late. When it comes to rare diseases, you have to keep in mind that these doctors may write a short paragraph about your illness and that's it. That being said, it's always important to remember to advocate for yourself, especially when something doesn't feel right.

Dr. Bob Goldberg (31m 50s):
Thank you for sharing your story with us. If there's a healthcare issue impacting you or a loved one, we want to hear about it. You can share your experiences and your opinions right here on the podcast. Just send an email to Terry and me at podcasts@patientsrising.org that is podcast@patientsrising.org.

Terry Wilcox (32m 8s):
As always, thank you for tuning in to today's episode. Be sure to leave us a rating and a review. We'd greatly appreciate it and it's so helps us spread the word to more patients, caregivers and advocates just like you.

Dr. Bob Goldberg (32m 23s):
Don't forget to follow us on your favorite podcast app. That way, you'll get notified when our next episode goes live. Next week, we explain a wonky acronym called PDUFA. Last week we had ARP, next week we have PDUFA. It stands for the Prescription Drug User Fee Act. It plays a critical role in expediting the FDA's review process for new drugs, especially for those rare diseases, this is an incredibly important issue to watch closely.

Terry Wilcox (32m 36s):
On behalf of Dr. Bob, and everyone at Patients Rising, I'm Terry Wilcox - Stay healthy and we'll see you next Friday.