Mystery Hospital Costs

0 (6s):
We'll have to move heaven and earth to get more people vaccinated, create more places for them to get vaccinated, to mobilize more medical teams, to get shots in people's arms. The price tag of some $2 trillion of course stands out given the divided politics that we're in, but the calculation here from President elect Biden is that he needs to go big. Federal law now mandates the Hospital Price Transparency Rule so consumers can compare and shop healthcare services. The rule says that hospitals must make a public list of standard charges. Healthcare has benefited from shrouding their prices in secrecy and in darkness and that has got to stop.

Terry Wilcox (47s):
On January 1st, the Hospital Price Transparency Rule went into effect requiring hospitals to list the prices of their services upfront. How this will change the way patients shop for care is up next. Welcome to the Patients Rising podcast. I'm your host, Terry Wilcox, Executive Director of Patients Rising, a hundred thousand members strong organization of patients with chronic illness. I'm joined by my cohost, a man of many talents, we all know that, and the first person to have actually watched all of Netflix. He is Dr. Bob Goldberg, Co-founder of the Center for Medicine in the Public Interest. I heard they gave you a trophy, Bob.

Dr. Bob Goldberg (1m 26s):
They should pay me for that work, especially having to slog through Emily in Paris, you know, which I did to keep marital compromise flourishing in my and the Goldberg household. That aside, happy to join you each and every Friday, there is certainly never a dull moment in the healthcare policy space. Terry, especially now, you know, new administration taking over next week, there's a new healthcare policy agenda around the corner and a lot more. So every week we're going to be here to help make sense of all the breaking health news for our listeners and we're going to dive into the latest healthcare policy debates in our nation's Capitol and how it impacts the millions of Americans living with chronic disease.

Terry Wilcox (2m 10s):
Well, this week we're looking at some very positive news for the start of 2021. On January 1st, the Hospital Price Transparency Rule went into effect and for not just chronic disease patients, but everyone in America. It's a major, major victory. The rule will require hospitals to post their negotiated rates with insurers and what cash discounts they offer.

Dr. Bob Goldberg (2m 32s):
We always talk about just how important it is to put patients in charge of their own healthcare decisions and a rule that requires that kind of transparency does just that. I mean, if you enable more patients with more information, they're going to be very smart consumers. And in this case, if they're able to compare prices across hospitals, we could see some cost savings in the long run.

Terry Wilcox (2m 55s):
Yeah, that's absolutely right. It takes away the mystery of the cost. And as you said, it gives power to the patients in selecting their care and managing those costs. To help us break down this rule and how our listeners can take advantage of smart healthcare shopping, this week I spoke with our friend David Balat. David is the Director of Right on Healthcare Initiative at the Texas Public Policy Foundation. We discussed how this rule is going to reshape the way patients make healthcare decisions. That conversation will be up shortly, but first this week's healthcare news headlines.

Robert Johnson (3m 31s):
In your health news. America knows a little more about President elect Joe Biden's plans to take on the COVID-19 virus once he's in office next week. A big piece of the plan is focused on vaccinations. The incoming chief executive wants to pour billions of dollars into state and local health departments boosting their distribution efforts. He's proposed creating mobile vaccination centers in rural areas and hiring thousands of people to give shots. Biden's plan is key to his goal of delivering 100 million doses of vaccine in his first 100 days in office. But even he admits none of this will happen without help from Congress. Janet Woodcock, a previous guest on this podcast, will be sworn in soon after Biden.

Robert Johnson (4m 12s):
Her job to lead the Food and Drug Administration until a permanent nominee is named. Woodcock has been at the FDA for more than 30 years, spending the last year working on the operation warp speed vaccine project. Listen to her talk with Dr. Bob about bringing drug manufacturing back to the U S in a podcast that aired October 16th. Find it now at patientsrisingpodcast.org. Whoever gets the FDA job will have to contend with a new report from an independent examiner that finds the FDA needs to move faster in the face of emergencies. The 70 page document compiled by McKinsey and Company calls on the FDA to reassess how it issues emergency authorizations, adding the agency also needs to improve its communications.

Robert Johnson (4m 56s):
The drug cards seniors were promised before the election won't happen after all. The plan to give older Americans $200 drug discount cards proving too tough to deliver before president Trump leaves office. Said one official involved in the process, "We ran out of time." Finally, the incoming Chair of the Senate Finance Committee is preparing to revive his campaign for sweeping drug pricing legislation. Senator Ron Wyden of Oregon plans to reconsider a bill that would penalize drug makers for certain price hikes. There's also talk of capping seniors' out-of-pocket costs. That's your health news update for this week. I'm Robert Johnson.

Terry Wilcox (5m 39s):
Now, Bob, we want to make it very clear for the purposes of our show there's a lot happening in the nation's capital right now. I mean, that's an understatement. And while there's so much to say, we aren't going to rehash, which you are probably hearing from other more appropriate places that can discuss politics and theory and history and security. What we really want to focus on is making sure patients are represented in the conversations with the new administration and a new Congress. So Bob, just around the corner is the inauguration of President elect Joe Biden and one of the major health challenges that face the incoming administration is the vaccine rollout.

Terry Wilcox (6m 20s):
President elect Biden has pledged a hundred million vaccinations in his first hundred days, but already vaccine distribution is off to a bumpy start in many States, and it's frustrating and disheartening to many of those with chronic illness who are waiting for their turn in line. So let's start off by looking at where the vaccine rollout has actually gone pretty smoothly, which surprisingly enough, West Virginia, South Dakota. What do you think the difference in States like that compared to States with bumpier rollouts like New York's having a fairly bumpy rollout, a lot of complaints coming from New York.

Dr. Bob Goldberg (6m 55s):
Well, there's three things. The first is West Virginia, South Dakota, and then Israel which expects to have everyone immunized by the end of March. They have not relied upon hospitals. Hospitals are very cumbersome, bureaucratic institutions that relied upon community clinics, private contractors. You know, they've had the flexibility of an experience of dealing with surges and demand for vaccines and other products. So that's one. The second thing is that looking at Israel and put them along with South Dakota in West Virginia, they were ready for this. There had been a lot of outreach. There was some training of the National Guard to help make sure that the shipments move smoothly.

Dr. Bob Goldberg (7m 35s):
The third thing was they departed from the CDC guidelines and try to immunize everybody is as quickly as possible. Whereas, in New York and my home state of New Jersey, they've been particularly strict about no, if we don't immunize everybody in one A first, no one else is going to get it. So that's changed, and I guess we'll have to see if that's going to make a difference in these particular States going forward.

Terry Wilcox (7m 59s):
Well, what is the deal with, you know, you've heard and read stories in New York about them having to throw vaccine doses out and that people over 75 aren't allowed to get the vaccine.

Dr. Bob Goldberg (8m 12s):
Yeah, well that has changed recently, you know, cause Governor Cuomo decided to make it so.

Terry Wilcox (8m 18s):
I did see that he had rolled some of that back, but initially, what was the fear in that place? He didn't think they would have enough for frontline workers or they were just trying to be too bureaucratic about it.

Dr. Bob Goldberg (8m 29s):
You were being too bureaucratic. And the other thing was that the original guideline itself, and I've said this before, was worked off of the social justice playbook, which means the minority communities have been historically underserved and therefore they bear the brunt of COVID. And in fact, if you look at purely racial data, minority communities do have higher infection rates and mortality. But if you look at the age adjusted range, as you look at you again, even in those communities, the highest risk of both mortality and infection are people over the age of 75. Other States have like Florida has done that to a certain extent and certainly South Dakota and West Virginia, immunized everybody that was higher, they wanted to keep the death rates down and Israel has done the same thing.

Dr. Bob Goldberg (9m 12s):
So it was a little bit of bureaucratic incompetence because you leave it to the hospitals, which is the last place you want to do it, because hospitals are doing so many other things.

Terry Wilcox (9m 20s):
Yeah. That seems really complicated. It seems to me like they would have made some sort of process with, you know, your CVS and Walgreens and similar ways that we get flu shots.

Dr. Bob Goldberg (9m 31s):
Yeah. and you got to go through the pharmacy department and there's all sorts of issues and limitations. You've got legal checking on all the guidelines. It's much quicker and much less bureaucratic doing it through Walgreens or ShopRites or Giants and stuff like that.

Terry Wilcox (9m 47s):
Yeah. I mean, I know it's a little more complicated. There'll be a little more paperwork obviously, cause it's not like the flu shot. Not everybody can get it right away. They don't have enough for that. So they would still have to have some sort of criteria for who's getting it. But at least I think it could be a little more efficient than obviously the hospitals.

Dr. Bob Goldberg (10m 3s):
Right. And I think that's going to be the focus, you know, in the new Biden administration is to see if they can help change that arc going forward.

Terry Wilcox (10m 12s):
So tell us a little bit about, you and I had a brief discussion yesterday about this company that's launching new versions of existing medications at lower prices. What do we think about this? This seems like it's a good thing for patients.

Dr. Bob Goldberg (10m 27s):
So Terry, the name of the company is EQRX and it's a company that's launching new versions of existing medicines at lower prices. They're coming in as a competitor product. It's really sort of a template of how to use market forces and competition to get to the net price, which of course is really the price that counts to pharma, but also at a price that would be affordable to patients. So this is something that other companies have tried to do and failed in the past. I think in large part, you're able to do it now because the rapid pace of vaccine development has suggested you can bring products to market with a lot less time and a lot less money going forward. And if you're just focusing on those products in a particular stage, your return is going to be a little bit less and you could do fine.

Dr. Bob Goldberg (11m 13s):
Now, the other thing is that initially, and I thought, and I was wrong, that, Oh, who's going to invest in this, but they just raised a half a billion dollars in the series C round. So I give them a lot of credit. I know that Peter Bach has been one of their advisors. You know, Peter and I don't agree on much, if anything including baseball, but I think, you know, whatever guidance he's been giving them and the direction of the company is great. And it's a market way to reduce prices without having to resort to price controls.

Terry Wilcox (11m 42s):
Well, I look forward to you interviewing them and getting them on the show cause I would really like to learn more. I think this is the type of competition and innovation in drug delivery that, you know, we want to see for lowering costs for patients and giving them more options obviously. So one of the other things that I want to talk a little bit about today is looking back, I remember last year, you know, we were talking about how quickly the FDA and the Trump administration had moved to approved generics that were backlogged, et cetera. But one of the successes of the FDA in 2020 was that more than half of the drugs approved for patients were for those patients with chronic and rare diseases.

Dr. Bob Goldberg (12m 21s):
Yes. Again, the emphasis on Covid, you know, sort of obscured that success in what we're seeing increasingly is that more and more medicines are coming out for people with rare diseases. It also has to be chronic in some cases, terminal, and they're coming in at a much faster pace than ever before to the point where, you know, a lot of the new medicines ranging from gene therapies to STEM cell therapies, to antibodies, many of them are curative and some of them are the first in class to address particular conditions. Along those lines, Terry, we've talked a little bit before the show about the fact that Lilly just revealed in a fairly large clinical trial that their drug for Alzheimer's seems to have restored people's cognitive function to pretty much what it was before they were diagnosed.

Dr. Bob Goldberg (13m 18s):
I mean, that's significant.

Terry Wilcox (13m 19s):
That's really significant and really great news. So, I had a great interview this week.

Dr. Bob Goldberg (13m 26s):
You always have great interviews.

Terry Wilcox (13m 27s):
Well, yeah, I like the interview part. I know you do too. It's fun to really dive into a topic. And I spoke with David Balat who's been on our show before, earlier on back in probably April of last year, we talked about the Price Transparency Rule that went into effect on January 1st for hospitals. David was an administrator of a hospital in his former life. So he's really aware of how this would affect hospitals in this space. And many hospitals aren't complying, they're having delays, but it is good news for patients. I mean, basically they were told by the courts doesn't matter, starting January 1st. And I think they really thought, at least from my conversation with David, David says, they really thought this wasn't going to happen, that they weren't really going to have to do this.

Terry Wilcox (14m 10s):
So it's a little bit of a slow start, but they are going to need to comply and it's going to be up to patients and Americans and those of us who want price transparency to hold their feet to the fire on it.

Dr. Bob Goldberg (14m 21s):
Yeah. I know in the interview, I mean, one of the things you guys discussed is the fact that we are going to have to sort of keep an inventory or a check of what hospitals are implementing and why aren't they implementing to make sure that the adoption is fairly rapid and widespread.

Terry Wilcox (14m 37s):
It's great news. And I think this is really going to lead to, you know, not immediately, but you know, fairly quickly most anything based in technology moves fairly rapidly once they figure out there's a space for it, you know, telehealth and you know, it was amazing how much more streamlined everything got from the beginning of COVID to now when you're having a doctor's appointment and the types of systems that they have in place. And I think that's going to be the case here because David talked about an example of, you know, say you're in a small town and you have two hospitals and you're getting fill in blank, knee surgery or whatever. And you might pay a different price even through your insurance at each of those facilities, but patients can make those choices by, you know, looking it up on an app, you know, or some kind of thing on their device or at home to figure that out.

Terry Wilcox (15m 23s):
And then in turn, insurers and others can even incentivize patients to find lower prices. I mean, we haven't really as patients been incentivized to do anything, but just like go to the doctor, pull out our card, pay $35, wait for a follow-up bill or whatever. So I think this is going to be really waking patients up and becoming more aware and involved in their care.

Dr. Bob Goldberg (15m 45s):
Yeah. You have a lot of these health grade systems out there, but they don't mean anything absent the price tag next to it. So I'm just thinking, for instance, like I'm expecting, my daughter's expecting, I am not expecting, let's make that clear. My daughter is expecting a boy in June and you know, we were talking about the fact that gee, you know, she might be able to shop around for the best place or if there's a place that she likes, she can go and negotiate the price. I think that's really, really great. I think we're also going to see more of that in, in the prescription drug prices as companies like EQRX enter the market.

Terry Wilcox (16m 22s):
Definitely. Here is my interview now without further ado with David Balat. He's the Director of the Right on Healthcare Initiative at the Texas Public Policy Foundation. Thank you for joining us today, David.

David Balat (16m 36s):
Oh, I'm happy to be here. I'm always glad to talk to you and your audience.

Terry Wilcox (16m 40s):
So David, can you explain to our audience a little bit about this transparency rule, what it means, where it's headed, what its future might be in a Biden administration?

David Balat (16m 49s):
Yeah, certainly. Let's talk about its origins. The origins actually come from the Affordable Care ACT, and President Trump issued an executive order that basically said that hospitals must reveal their prices. Now hospitals were wanting that to be their standard charge or their charge master list price, which are these super high hyperinflated charges that everybody's accustomed to seeing and none of us like, but president Trump said, no, that's not the price. The price is the negotiated rates between the insurer and the hospital. The American Hospital Association fought that very, very hard. They did not want to have that see the light of day and they fought it in federal court and they lost it, went to the Court of Appeals and they lost.

David Balat (17m 30s):
They asked for a delay in the implementation and they didn't get it. So many hospitals were not prepared because they didn't expect this to be a reality. But thankfully, it is. Now hospitals are now required, there are a number of things that they're required to do, they're supposed to post their negotiated rates by payer, according to CPT codes, it must be machine-readable, which means it's, you know, in Excel or some other form that can be read by a computer and not just a jumble of numbers and letters. They need to produce a number of common covered procedures. And that was all supposed to happen January 1st, and many of them have provided the illusion of compliance.

David Balat (18m 15s):
So they've done a little bit of it and they're saying they're compliant, but they're really not.

Terry Wilcox (18m 19s):
So what does that mean? The illusion of compliance? What are they providing?

David Balat (18m 23s):
They may say, well, here's an estimate or here's an average of what the cost may be. So say let's just say a cat scan. They'll say, well, it's estimated to be an average of $2,000. Well, it can be a high of 4,000 and a low of 1,000 depending on the contract. So that really doesn't help anybody if they have to make a decision on where they're going to go for a cat scan, depending on what insurance they have. So let me give you a real example. So let's just say I have Blue Cross, okay, and I have to have a cat scan and I have a $5,000 deductible and that's not really out of sight. That's fairly normal. And I have the option of two hospitals in my town and they're both in network with Blue Cross.

David Balat (19m 5s):
Now one hospital is part of a big system and they're able to negotiate great rates and a cat scan let's just say is $2,000, but then hospital B over here, they're just a standalone hospital. They don't have a big network or a big network of hospitals. And the best that they can negotiate with the insurer is a thousand dollars. Now the fact that I have a $5,000 deductible, it means that I'm responsible in both of these places to pay the bill. But which one am I going to choose if I know what the real price is? I have $2,000 over here, $1,000 over here, all things being equal with the kind of test, where am I going to go? Of course, I'm going to go to the one that only cost a thousand dollars. That's what we do in every other aspect of life.

David Balat (19m 47s):
It's how we shop at the grocery store, the car dealership, you name it. But healthcare has benefited from shrouding their prices in secrecy and in darkness. And that has got to stop.

Terry Wilcox (19m 60s):
So David, for the, hospitals not complying with the rule, what penalties, if any, are in place to get them on track.

David Balat (20m 7s):
The penalty for non-compliance for these hospitals is $300 a day. That equates to almost $110,000 a year. That's a minuscule amount of money to those facilities. So I would recommend all of those listening, go to your local hospital website, look for it. If they're not complying with the law, then I'll be happy to provide to Patients Rising the website where you can submit a complaint to CMS and let them know that this organization is not compliant because in addition to the penalty, their hospital will go on a website showing them as noncompliant.

Terry Wilcox (20m 44s):
I agree. Now I remember reading in this particular bill, when this came out, that it was going to also include the negotiated rates for drugs. Now is this drugs distributed through the hospital?

David Balat (20m 57s):
Well, this is, you got to remember, this is only for hospitals. So yes, it would be for hospital distributed product, services and medication. So it wouldn't be outpatient,

Terry Wilcox (21m 6s):
Right? So it would be infusion drugs, things that people receive when they're in the hospital. Things like that.

David Balat (21m 11s):
That's correct.

Terry Wilcox (21m 12s):
I understand.

David Balat (21m 13s):
Well, it's not necessarily just in the hospital, also on the outpatient basis, for anything that a hospital owns. So if they own a standalone imaging center, that would still apply to them.

Terry Wilcox (21m 22s):
Okay. I see. So all of that within the hospital system.

David Balat (21m 26s):
Correct.

Terry Wilcox (21m 26s):
Now this is the same kind of thing we get into when they were going to tell pharmaceutical companies to put their drug prices in TV ads. Now, many companies, there were a few companies that went to great lengths now, and they never had to do that because they won in court. But they said many of the similar things, you know, it depends on the insurance. It depends on the negotiated rate. It depends on this. It depends on that. How do we get around that?

David Balat (21m 52s):
Well, we have a big problem in healthcare with the number of middlemen that are involved. So you look at the pharmaceutical list price. The reason the list prices have gone up so much is because of this rebate structure that we have on the outpatient side and the share back structure that we have on the inpatient side. And those are all ways that people in the middle of that supply chain that don't really ever touch the medication benefit financially. And there's no political will to fix that system. And that's something that needs to change. You'd asked earlier about what the new administration would do as far as transparency in their proposed healthcare priorities. There was discussion about the importance of price transparency.

David Balat (22m 35s):
Now, I certainly hope that that is the case. We look forward to supporting that effort. I don't care, Republican or Democrat, conservative or liberal. This is about patients and patients need to see prices. So price transparency should not be a political or a partisan issue whatsoever. And in fact, when we've done our polling, nearly 90% of people, and that's across the board, regardless of political affiliation, believe that this is something that should be in place. So this transcends political divide,

Terry Wilcox (23m 8s):
This absolutely should be in place. I mean, patients should be able to know exactly what they're going to pay. Now I wonder, I don't know if you've thought about this, but I have, when I heard about the hospital pricing around drugs, how might this affect, you know, because a lot of the hospitals get medicines at a really low rate because of 340 B.

David Balat (23m 29s):
Right.

Terry Wilcox (23m 30s):
And the disclosed price of what, of what they're paying and what they're charging is, you know, can be quite significant, especially when you hear things like really expensive infusion drugs are a dollar on the 340 B market. What do you think about 340 B? Is there any political will around fixing that? Do you have any thoughts on that at all?

David Balat (23m 51s):
I'm hearing more and more, you know, to be quite honest, the more that we've talked to folks in DC and even at the state level, it really doesn't matter where they are in terms of where they serve the public. Not many people understand the program. So we're having to do a lot of education to explain what it is, how it works and how it should better be operated so that it functions the way it was intended to help patients. And right now all it's doing is helping the bottom lines of hospital facilities.

Terry Wilcox (24m 22s):
I absolutely agree with that in that what you just stated was one of the problems we always had at Patients Rising, trying to really talk about 340 B to get patients to understand how that was affecting them. When a pharmaceutical company has to sell all of their drugs to all of these hospitals and the program has expanded for as low as a dollar. Sometimes it even hits free. Like they just have to give it, give it to the program or it's a penny or whatever. It gets really crazy that that can affect what they're paying as list price and negotiated rates in plans that aren't getting 340 B pricing, right? So it's affecting drug pricing across the board and it has good intentions, the 340 B plan, and I think there's a way for us to fix it.

Terry Wilcox (25m 6s):
I just hope that this new Congress has the political will to look at that. Cause it's another thing that I think is definitely out there. Now you and I have talked a lot about in the transparency space, all of the sort of tricks and things that they use against patients like copay accumulators, step therapy, prior authorization, all of these things that they use to sort of delay, deny, you know, override patient care, and patients are stuck in the middle of all the middlemen really of the negotiations happening in the middle, on their behalf that they have no say in and really no knowledge of. Right?

David Balat (25m 44s):
That's correct.

Terry Wilcox (25m 45s):
So what do you think about copay accumulators in general? Do you have any thoughts? I mean, we have it in place right now from the NDPP rule. They basically said copay accumulators, you can do copay accumulators. They didn't do without a generic equivalent. We've been looking at a lot of state laws. There are several States that have passed bans. And speaking of States, I guess I'll segue into that into States. I mean, you work a lot in Texas. Do you think that there's a lot of state stuff that we can look at across this transparency and all of the stuff that we're looking at here on patient access barriers?

David Balat (26m 22s):
I do think that there are a lot of things that can be done at the state level. And I think that there needs to be more work on the part of the insurance departments to enforce it. Because even if laws are going into place, many of the people that live in that state aren't as knowledgeable about those laws and what's unfortunate is the insurers and the PBMs are not going to communicate what they're required to do. If it doesn't work in their favor. We need to have more of our patients and more of our providers empowered to understand what's going on and how to fight back and get what is needed for the patients.

Terry Wilcox (26m 55s):
I completely agree. Patients are struggling in this space, especially if they have an ACA plan or some of these other types of plans. Now, this is a question. Speaking of plans, you know, we worked together a lot over the past several years in looking at expanding the types of plans that patients have access to. Where do you think that is in this new administration? I mean, it looks like they want to fix the ACA and create a stronger public option. That's what I've read in president elect Biden's plan.

David Balat (27m 26s):
That's all I'm hearing as well. And many people are being left behind. We have a common friend in Texas that has an ACA plan and is not able to get the medications that she needs. And that's in an ACA plan. And they're pulling drugs on and they're putting on and pulling them back off. And it's just an absolute nightmare for many people that have chronic disease. In this one person's case in particular, she's a fighter, she will advocate for herself, but you know what? She is the exception, not the rule. So many people are. So, you know, they're dealing with a lot.

Terry Wilcox (27m 59s):
Yeah. They're dealing with a lot. I mean, and especially right now,

David Balat (28m 2s):
Without question and I don't, you know, I'll tell you that I was told at a very early age, when I was a young administrator of a hospital, I was told by a mentor of mine, he said, David, the hospital's the only business where the customer comes in, in a vulnerable state. And because of that, we have an obligation to treat them with care and grace. I wish more people believe that these days, I just don't think that that's as much the case, but when people are so dejected by the system that has put up these almost impenetrable walls from getting what it is that they need, they just give up. It's really a heartbreaking situation. And those are the kinds of stories that drive me to continue to do what I do here at the foundation and working to educate lawmakers on how to produce better policy.

Terry Wilcox (28m 50s):
Well, one final thing I want to talk about before I let you go today, cause I know you're a busy guy, you and I have talked a great deal about the lack of political will obviously to touch ERESA, how hard it is, how difficult it is to do that. However, and we've talked about this on the podcast in a couple of shows, you know, the Supreme Court did rule in favor of Arkansas to put in place rules for PBMs and how they operate in their state. Right?

David Balat (29m 16s):
Correct.

Terry Wilcox (29m 18s):
What do you think that looks like for other States going forward? He was a unanimous decision.

David Balat (29m 23s):
I think it looks good. I think that was a great ruling. I think that it will be taken up, but the problem that we'll see in this particular session is that the legislative sessions and the various States that are happening right now, and today's the first day of session in the state of Texas, is that there is not much oxygen for anything other than Covid so all these legislative sessions are dealing with just a weird environment that is not typical for them. So will something like that be dealt with? I hope so. I hope that it will, but more than likely, I'm guessing that more work will be done to prepare for the next legislative session. So David, I really appreciate you joining us today and talking about these very important patient access issues, and I look forward to working with you in 2021.

David Balat (30m 10s):
Oh the same here. I look forward to it. It's going to be a good year. We're going to get a lot done and we're going to take care of the needs of Americans and helping them navigate this healthcare industry of ours.

Terry Wilcox (30m 27s):
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. To learn more, visit patientsrisingconcierge.org, or email us at askusanythingatpatientsrising.org.

Dr. Bob Goldberg (31m 14s):
Thank you for bringing that conversation to us, Terry. And now up next, we hear from our Field Correspondent, Kate Pecora, who continues to speak with patients across the country. Take a listen.

Kate Pecora (31m 27s):
Today, I am joined with Meredith Casey. She's a young woman, actually from my hometown, who's recently been making a lot of waves in the traumatic brain injury space. Meredith, it is great to have you on today.

Meredith Casey (31m 38s):
Thank you so much. It's such an honor to be here today for me, actually. I really appreciate you having me on.

Kate Pecora (31m 45s):
So I want to start off actually hearing about yourself and your injury because I know that that is a fundamental part of the advocacy work that you've been doing. So can you tell me about yourself and how you got a traumatic brain injury or a TBI?

Meredith Casey (31m 58s):
I am 16 years old. Like you said, I live in the same town. In my free time, I like to dance. I'm a sophomore in high school. And also I run my own nonprofit with the help of my family. I'm sure we will be getting into much more of that. But with my head injury on December 15th, 2015, I hit my head on my granite countertop while rushing to pick up my homework to make the bus on time. There was no immediate bruising or external bleeding that could be seen, but there was an immediate onset of extreme headaches. And after a couple days of visiting the school nurse, which I had never done before, everyone thought I had a concussion.

Meredith Casey (32m 44s):
After months of what was thought to be concussion, I visited the neurology team at Tufts floating hospital. And after my first MRI that was ordered, still nothing, so they just thought a really bad concussion. Everyone was stumped because usually concussions aren't six months long. It wasn't until I visited my ophthalmologist, which I had been seeing since I was four, which was great because since I been seeing other doctors, no one really had a baseline except for my ophthalmologist. He took one look at my eyes, turned to my mom and whispered, you have bigger problems than a concussion. As I heard this, you know, a little 11 year old me was kind of like, Oh, what does that mean?

Meredith Casey (33m 29s):
So at the time, I had braces on, so immediately the next day I had to have those taken off. And the day after that, I had an MRI and that MRI showed that I had a blood clot growing in the base of my brain. So after about 10 lumbar punctures and two brain surgeries, and so many medications that I can't even count, I've been left, struggling, facing pain in my everyday life. And this is because I have high cerebral spinal fluid and pressure behind my eyes. And I have, I tell my friends this stuff and they're like, okay, now you're going to re-explain it, but in dumb people words, because they have no idea what I'm talking about.

Meredith Casey (34m 15s):
Basically the veins on the left side of my brain are really, really small. So when like the blood and all the fluid tries to get through there, it can't, and it goes really, really slow so there's a buildup which is the build up behind my eyes. So there's a risk of going blind, so I have to have my eyes checked, all that. So I'm 16 years old and I still face headaches every day. I hate to admit it, but I forget what a day without pain is like. It's been five years and I have come to terms with the fact that this is what my life is going to be. And I've just kind of accepted that and made the best out of it.

Kate Pecora (34m 50s):
After your injury, I realized that your life probably changed pretty dramatically, right? And so now you were living with a disability. You're trying to go to school and adapt back to like life in the local community. I want to know how that adaptation went and how are you doing now?

Meredith Casey (35m 7s):
When I initially hit my head, I was in school, but when the blood clot was found, I was taken out and taken out of the last, I'd say about six months of the fifth grade, which at the time I was like, Oh, that's fine. It's not middle school. I'm fine. I should be fine. I was tutored every day of that summer to catch up with my classmates to be able to enter the sixth grade or else I would have had to redo my fifth grade year, which I was like, no way not doing that. I'd say returning to school was very bittersweet. You know, of course, being able to see everyone, being able to be back in a school environment was great. Some things that I did not prepare myself for was coming back and seeing that life had gone on without me, you know, people had moved on, friendships had moved on and you know, of course that was going to happen, but I wasn't ready for it.

Meredith Casey (36m 2s):
And I wasn't there to experience any of it really. So I went back thinking that time just kind of stopped when I left, but it didn't. So I'd say that I struggled for a long time with friendships and being able to trust. And of course through this whole time, through all my head trauma and everything, I was diagnosed with depression and anxiety and, you know, still struggle with that today. And so I would say my return to school wasn't exactly easy, but in the end it was well worth it.

Kate Pecora (36m 38s):
One of the things that I wanted to talk about with how you kind of turned all of that pressure and, you know, the feeling of being ignored and helpless and in pain all the time, how you turn that into an opportunity for yourself. I know that, you know it wasn't easy to come back from something like that, but eventually you did. So tell me about your organization a little bit.

Meredith Casey (37m 2s):
So I realized through all of what I was going through, people want to help. There are a lot of people that want to help. Every time that I would go into a procedure room or a surgery, there would always be a gift card or a Teddy bear or blanket on my bed that I would be able to take home with me. And these are not provided from the hospital funds. These are provided through donations that the child life specialists get. And I realized that and I was like, well, I want to do something like that. I want to, you know, give back if they're giving so much to me, and this isn't something I was told to do, this is just something that I wanted to do. So for my 12th birthday, I asked for gift cards to give to the hematology oncology clinic at Tufts.

Meredith Casey (37m 47s):
And we ended up donating over $500 worth of gift cards to them. And that was really the first time I'd ever done something like that. And it was something. So I kind of felt selfish in the moment because I saw, I felt so good doing something so good. So I was like, well, that doesn't make any sense. You know, you're supposed to be making other people feel good. You know, that's kind of the point. So I started the Mighty Meredith project, not only because I needed to fill a gap in my life that was taken away from me when I hit my head, but also to fill a gap in other people's lives and in society that was not being talked about such as hidden injuries.

Meredith Casey (38m 28s):
And in today's world, I truly believe that kindness can fix mostly anything except for COVID.

Kate Pecora (38m 38s):
So the Mighty Meredith project has been a really great resource for people experiencing TBIs and concussions in the Boston area, and I know that you tend to focus on three main pillars, right? So obviously education on concussions and traumatic brain injuries, acts of kindness in local communities like you had just talked about, and giving back to the children who are also experiencing similar circumstances as what you went through. So being so young, it seems like you've stepped into the advocacy world a lot earlier than even some of our most seasoned advocates. So can I ask sort of what recently the Mighty Meredith project has accomplished and how you've come to grow the organization over the past few years?

Meredith Casey (39m 21s):
So our biggest donating season is the Christmas season. And every year for the past four years, we've been doing something called fill the box, which is when we collect gifts to give to the hospital to give out throughout the year, but also wrapped gifts to give to the kids on Christmas Day or in the hospital, just because, because who wants to be in the hospital on Christmas. And this year we were able to collect over $20,000 worth of gifts to donate to Tufts Medical Center which is just incredible. I think within my local community, we also run a scholarship for kindness to the graduating high school seniors who can apply to get a scholarship of a thousand dollars, a boy and a girl for showing kindness in their everyday lives.

Kate Pecora (40m 14s):
So thank you Meredith. It was really great to have you on today and to have you talk about, you know, your journey and the Mighty Meredith project.

Meredith Casey (40m 20s):
Thank you so much. It was a pleasure.

Dr. Bob Goldberg (40m 23s):
Thanks Kate. And now it's one of our favorite parts of the show. We get to hear directly from members of the Patients Rising community. And here is this week's patient correspondent.

Molly Huffman (40m 35s):
Hi, my name is Molly Huffman and I have systematic lupus, a blood clotting disorder called antiphospholipid syndrome, and rheumatoid arthritis I'm from new Orleans so that puts me in the first congressional district of Louisiana, and something that I would really like to see in 2021 would be a better representation in media with individuals, especially younger individuals with chronic illnesses, that whole invisible illness stigma is very real. And it's so interesting how most are blind to the needs of the community, unless they are personally affected by it in some way, shape or form. It's almost like a veil is lifted when you come in contact with someone who's chronically ill and you're just like, Oh my gosh, wow.

Molly Huffman (41m 16s):
They go through a lot of stuff. And it's so interesting, all my friends and some family members, even I keep having to explain over and over again what it means to live with illnesses like this and what exactly I need and how much effort and energy goes into just keeping myself healthy. School, you know as a student college, I get a whole bunch of questions. Sometimes I get weird looks. Sometimes I'm inapproachable if I'm using a mobility aid and I don't know if it's a nervousness to ask or a curiosity, but I would love to see more exposure so people are more comfortable being around someone like me.

Dr. Bob Goldberg (41m 54s):
Thank you for sharing your stories with us today. That's the reason why we care so deeply about patient advocacy and we hope that this is the year many of the challenges faced by the chronic disease community are finally addressed in Washington DC. And if there is a policy issue impacting you or a loved one, we want to hear about it and you can actually become a patient correspondent and share your stories and experiences with us. All you have to do is send email to me and Terry at podcast@patientsrising.org that is podcast@ patientsrising.org

Terry Wilcox (42m 30s):
As always, thank you for joining us for today's episode. We hope you've been enjoying the show. And if you are, we would be so grateful if you could leave us a rating and a review right now, it takes less than a minute. That helps us be discovered by other listeners just like you.

Dr. Bob Goldberg (42m 45s):
And that helps us to continue to create this show. And don't forget to subscribe to the podcast on your favorite podcast app. And while you're there, you can also share the episode with friends and family, eh, even your enemies. If you'd like on social media, they'll love it. And they'll become friends. Doing this helps us spread the stories and voices of the chronic disease community far and wide.

Terry Wilcox (43m 7s):
Join us again next week for another new episode. Until then, for Dr. Bob and everyone at Patients Rising, I'm Terry Wilcox, keep your distance and stay healthy.