Will Democrats Help or Hurt Patients?

NBC News (6s):
CNN will now project that Democrat Raphael Warnock is elected to the US Senate. NBC news now projecting that Jon Ossoff, a democrat will win the Senate runoff in the state of Georgia, and it will give Democrats control of the Senate as of January 20th, when Biden and Harris are sworn in. Harris becomes the tie breaking vote. Well, it certainly gives the incoming Biden administration a lot more leverage and maneuvering room to push their own healthcare agenda.

Terry Wilcox (35s):
The results of Georgia's Senate runoff races are in bringing an incredibly long election season to a close. Now what does a Democrat majority in the United States Senate mean for the direction of health care legislation? That's coming 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, the guy who was the ACE reporter for his high school newspaper, a real encyclopedia Brown. He is Dr. Bob Goldberg, Co-founder of the Center for Medicine in the Public Interest. Happy 2021, Dr.

Terry Wilcox (1m 16s):
Bob. I can picture a young doctor Bob with a pencil behind his ear.

Dr. Bob Goldberg (1m 20s):
Yes. Happy New Year, Terry. Actually in high school, that pencil wound up in other places that were too controversial, even then, for the high school newspaper. All I can say about this year is we made it and I'm hoping 2021 shapes up to be a much better and happier and healthier year for everybody. And we're hitting the ground running with the Patients Rising podcast. Just like last year, we will continue to be here each week for what will be a very interesting year again in healthcare policy, giving our listeners the latest in policy debates, discussions, and decisions in our nation's Capitol and of course what it means for the millions of Americans living with chronic disease.

Terry Wilcox (2m 7s):
On our last episode, we dove into the Patients Rising pro patient agenda - our list of policy goals for the new administration. And it involves tackling copay accumulators and keeping ICER out of the government and the legislative actions necessary to improve access affordability and the quality of healthcare.

Dr. Bob Goldberg (2m 26s):
Yeah. And as you said, at the top of the show, the smoke has cleared and we can finally see more clearly what the healthcare priorities will be for Washington, Washington, DC that is.

Terry Wilcox (2m 38s):
This week spoke to a news editor who is deep into these issues in Congress. We talked about what the election outcome means for healthcare policies. David Mark is the Senior Editor at the Washington Examiner in Washington, DC. He is covering elections, the incoming Biden administration, and what it all means for upcoming policy debates in 2021. That interview will be up soon, but first this week's healthcare news headlines

Robert Johnson (3m 6s):
In your health news, a curfew imposed in Washington, DC, following Wednesday night's protest outside and inside the US Capitol did not help efforts to vaccinate local residents from the COVID-19 virus. While state and local police officers and National Guard troops from a multi-state area worked to clear thousands of protesters from the Capitol grounds, healthcare workers were forced to cancel vaccination appointments, leaving the city's most vulnerable to dodge the virus until their visits can be rescheduled. There's a new effort to get more people vaccinated. The program off to a slow start nationally. The latest idea is to speed vaccine doses to 6,000 pharmacies over the next two weeks. At the same time, encouraging States to move beyond healthcare workers to vaccinate people in other priority groups.

Robert Johnson (3m 53s):
New Coronavirus variants reported mostly overseas have scientists here worried the US is once again ill prepared to track or treat mutating strains of COVID-19. That's because experts say we don't have a large scale nationwide system for checking for new mutations. Experts interviewed by the New York Times say a national program to test and watch for new strains could help contain emerging hotspots, buying time for Americans to get their shots. Now, the Democrats control the US Senate. Powerful committees with jurisdiction over health legislation and policy will have new leadership. Washington Senator, Patty Murray, a supporter of a stronger federal response to the pandemic, will take the reins of the health education, labor and pensions committee.

Robert Johnson (4m 37s):
Oregon Senator, Ron Wyden, is set to take control of the finance committee, where he's been working already for sweeping drug pricing legislation. Terry's guest today. David Mark, will talk more about the policy implications of the democrats dual victories in Georgia later in this podcast. Finally, the pandemic has interrupted lifelines for children needing mental health care, leading to a disturbing increase in teens and preteens suffering without treatment. Children's hospitals across the country report more cases of severe depression and suicidal thoughts among children since the start of the pandemic. That's your health news update for this week. I'm Robert Johnson.

Terry Wilcox (5m 20s):
Now the big news today of course, is the aftermath of probably one of the most pivotal Senate elections in history. But before we get into the results of what it means for patients in 2021, we have to do some updates, some big updates. We need to discuss the Most Favored Nations Rule. A couple of weeks ago, we talked about how the rule would hurt Medicare infusion patients who received infusions in Medicare Part B. It was supposed to go into effect on January 1st, but a lawsuit has put it on hold for the time being. Now it's a temporary victory, but one that can only be celebrated once it gets thrown out and reworked. So what do we think, Bob?

Terry Wilcox (6m 1s):
I mean, I guess first we have to kind of acknowledge, you know, this was a rule. So from what I understand, you know, they can send it back, I guess, that they can send it back and start over and they can start it over with Biden's appointees to HHS and CMS and come up with something else. I don't necessarily know if that's good or bad news for, I mean, from pharma's perspective, I think anything that this is good news, that there's a chance to, you know, lobby and rework what's going to happen. And from a patient perspective, I believe that as well, but I don't necessarily think it's just all yay, it's over the Biden administration's here to rescue us.

Dr. Bob Goldberg (6m 42s):
No, that's not going to happen.

Terry Wilcox (6m 44s):
I don't think that's it either. So what are your thoughts?

Dr. Bob Goldberg (6m 47s):
Well, it'll be an indication of the direction the Biden HHS will take on whether they're going to be looking at making drug prices an issue, or patient access an issue. It's probably one of those things that they won't get to right away. There'll be lots of other things that are in their inbox, so to speak. So the more time that chronic disease patients have, the better off we are, and it will hopefully allow for, you know, a more thoughtful reconsideration of this very damaging and dangerous regulation

Terry Wilcox (7m 21s):
Yeah, for what they want to do here. I mean, obviously there's a whole slew of things that the democrats have put forth along these lines, negotiating with Medicare, negotiating drug pricing with Medicare. I mean, you and I can talk about the fact that that kind of already happens in a roundabout way,

Dr. Bob Goldberg (7m 38s):
Right? Yeah. I think that's going to be much higher on their list.

Terry Wilcox (7m 42s):
But I think that happened in a direct way, in a way that they can point to and say, look, what we did, we are negotiating with Medicare. Medicare is negotiating with drug companies, I think is going to be much higher on their list. You know, as a patient advocate, and I'm sure you feel the same way regardless of whatever your own personal views are politically, you always go into any situation with a new administration, whether you voted for them or didn't vote for them and want to work with them. Especially when you're talking about patients and healthcare, which we always believe should be a bipartisan issue.

Dr. Bob Goldberg (8m 14s):
Let me stop you right there, Terry. We know it's not going to be bi-partisan, let's

Terry Wilcox (8m 18s):
Okay, okay

Dr. Bob Goldberg (8m 19s):
Oh yeah, we're going to work for all Georgians. We're going to work for all Americans, even though the ones that don't think I'm the real president.

Terry Wilcox (8m 26s):
No, I get your point on that. I guess I should rephrase that rather than it should be bipartisan. We know it won't be bipartisan. It has a history of absolutely not being bipartisan. However, as advocates. I always feel like I will work with anyone. I will work with Bernie Sanders and I will work with Jim Jordan or fill in blank, whoever else. I'll work with anybody who wants to do what's best for patients.

Dr. Bob Goldberg (8m 54s):
Yes. That I agree with. And you know, that's been your career. That's been my career. I don't care who's in, who's out. The issue of patient access and access to innovation, that's the key. You can't go in taking a partisan approach to those kinds of considerations.

Terry Wilcox (9m 12s):
Right. Look, we know with Obamacare, with killing Obamacare, it's very political and it's not a bipartisan issue, even though we believe it should be. I guess I should say we believe it should be. It does not work out that way.

Dr. Bob Goldberg (9m 24s):
Though it does in some cases, I mean, look, the 21st Century's Cures Act, you know, with the exception of the ICER types and the little Johnny Arnold types, there was huge bipartisan support, and I think there will continue to be a huge bipartisan support for that.

Terry Wilcox (9m 41s):
And I think there will be a real interest in that type of stuff, because no matter what you say, you know, no matter what it looks like who had the balance of power, yes, is shifted when you look at it, but it's still a very slim, not necessarily united coalition. There's going to be a lot of room for things like 21st Century Cures, 2.0 and things like that. I think bipartisan groups of middle of the road, democrats and republicans want to get behind so they can perceive to be getting things done, especially those who are up for reelection in 2022, who have things on the ballot. I do think that Joe Biden will be able to get his appointees through fairly easily given the circumstances.

Terry Wilcox (10m 24s):
But I also think that there's not going to be much done given we're still in the middle of coronavirus and the vaccine rollout. And speaking of the vaccine rollout, should we believe the news? I mean, yeah, it's been a real

Dr. Bob Goldberg (10m 36s):
Well I just saw the news today, New York City broke its one day record. They actually vaccinated four people today. They weren't alive, but you know, still who cares, right? A shots a shot.

Terry Wilcox (10m 48s):
So what about Los Angeles? It's rationing care, turning away ambulances,

Dr. Bob Goldberg (10m 54s):
If you have a gunshot wound, they're giving you do-it-yourself kits I think.

Terry Wilcox (10m 60s):
What is that about? They don't have enough beds. Is that the truth? There's not enough beds for the population of California?

Dr. Bob Goldberg (11m 6s):
First of all, California is the epicenter of HMO's, and you know, without thinking, I think, you know, planning for a pandemic, the idea of shuttering hospitals that don't make money, that are at 40% capacity, you know, made a lot of sense, but California now has fewer beds per a hundred thousand people than Poland does, which is not a great thing happening if you have a pandemic. The other thing is that a lot of the shutdowns were designed by central planning and there was no forethought about you know, a surge capacity for instance. So California, you know, has been hoisted on its own petard unfortunately.

Dr. Bob Goldberg (11m 49s):
And secondly, it's not so much California itself, it's LA County, it's Southern California, where most of the problem has been. And even then, you know, if you look at the numbers of ICU units and bed utilization across the country, this is not something that will spread. We're still at 60% hospitalization bed capacity. And I think we have 30% capacity in the intensive care units. This is a consequence of, you know, when government gets in the business of deciding how many beds a population should have and not being able to plan for the future.

Terry Wilcox (12m 25s):
Exactly. Now, speaking of, talking about, you know, all of the protocols that have been in place, mask wearing, social distancing, all of which you know, are still being followed by most Americans. Did you read anything about this Paris Island mask study?

Dr. Bob Goldberg (12m 42s):
Yeah. Well, Paris Island is where the Marines train and what they did is they took two units, confined them to more or less confined quarters, but followed their behavior and transmission rates. One group got masked, the other didn't, wound up the transmission rates were about the same. And in many cases, most of the transmission was from asymptomatic individuals. So we can't really look behind the curtain and say, well, I'm sure in the, in the Marines, you know, the mask wearing is probably a bit more monitored than the regular study. But I think what it does show is that if you're in really close quarters and you're wearing masks regularly, there's still going to be a risk of transmission.

Dr. Bob Goldberg (13m 22s):
Again, it's a virus. A virus, as we see with the new strains, it's end goal is to achieve herd immunity. That's where they wind up one way or the other. Some people using as an example of saying, well, we shouldn't wear masks at all. What it does suggest instead is that a highly transmissible virus is going to find a way to infect people and that sometimes throwing up masks in fact causes a mutation. So, you know, I think it really boils down to, we've tried to be very fact based on this show, Terry, and I know in your interview with David Mark, we're going to enter the fantasy world of politics. And I'm really hoping that the way in which the pandemic has been misinterpreted or misapplied by the media is something that we can maybe it's hoping too much.

Dr. Bob Goldberg (14m 12s):
But I think what's going to happen is that the political class will respond to the political messages they've already created and maybe we'll muddle our way through despite their efforts.

Terry Wilcox (14m 22s):
Well, yeah, I'm looking forward to sharing the interview with you. One thing that I probably should have led with because you know, this is huge in the Patients Rising arena, is transparency, and you know, access, affordability, transparency, patients knowing what's going on with their care, with their plan.

Dr. Bob Goldberg (14m 40s):
Was there a case where some hospital advertised it's prices and then drove all the other prices down in the area?

Terry Wilcox (14m 46s):
Yeah. That was the Surgery Center of Oklahoma. They did that. That's a really great story. We should probably link to that in the show notes. Yeah. They just posted their prices online and patients started coming from other states, and you know, it drove the prices down, you know, in other states and their surrounding areas. It is just for knee surgeries or, you know, something that there's a great many of and patients should shop around when they can.

Dr. Bob Goldberg (15m 10s):
Well, it's happened with eye surgery, LASIK, and again, kudos to you and to Cynthia Fisher who had an op ed. Was it in Real Clear Health?

Terry Wilcox (15m 20s):
It was in Real Clear Health on defeating the hospital association's appeal to block price, transparencies implementation, which was not successful. There's been a couple of good Supreme Court rulings in my opinion, for patients recently, this is one of them making sure that this transparency in healthcare continues. And also obviously when they ruled in favor of Arkansas.

Dr. Bob Goldberg (15m 45s):
Right? And I'm just thinking, as you're talking that the pandemic is going to dominate discussion and so on, but things are still happening and still have to happen that impact the ability of people with chronic disease or already being impacted by COVID to get the care they need at an affordable price.

Terry Wilcox (16m 4s):
Absolutely. And I'm hoping that we can work with many on the hill to implement a true pro patient agenda in this next administration and in this next Congress. And with that said, here's my interview with David Mark. He's the Senior Editor at Washington Examiner on what patients should expect to see from DC after a very, this is an understatement, a very, very long election season. Take a listen. "Joining us this week to talk about everything going on here in Washington and the impact of the Georgia Senate elections on the patient agenda is David Mark. David is the Senior Editor at the Washington Examiner.

Terry Wilcox (16m 45s):
David is a journalist with an impressive resume of covering news for some well-known organizations here in the nation's capitol, including Bloomberg BNA, CNN and Politico. Now, David, we're recording this on Wednesday the day, the Senate debates the results of the presidential election. So thank you for squeezing us in during this very chaotic time for you and the people at the Washington Examiner newsroom.

David Mark (17m 9s):
Oh, happy to be here.

Terry Wilcox (17m 10s):
Well, as you may know, Patients Rising is a national advocacy organization that fights for the rights of patients with rare and chronic diseases. So you can imagine how interested our listeners are in the outcome of the Georgia elections and the impact on the federal health care agenda. Now it looks like democrats have made a strong stand in Georgia, so provided both wins hold as it appears to be the case, the Senate is going to change hands, barely. Nothing's going to be easy. But what impact do you think that will have on patients and their healthcare in this country? If any?

David Mark (17m 44s):
Well, it certainly gives the incoming Biden administration a lot more leverage, and the new room to push their own healthcare agenda. Otherwise had the republicans still been in the majority in the Senate, the Biden administration would have been really squeezed. What President-elect Biden has said he wants to do on healthcare is really build on the Affordable Care Act on Obamacare when he calls the public option, which is different than say single payer, which is being pushed by some more luckily elements like Alexandria Ocasio Cortez and the House, Bernie Sanders in the Senate. What exactly a public option entails is an open question.

David Mark (18m 25s):
And I think we'd have to see the legislation not to get too much into the weeds here, but I've been reviewing the rules of what's called reconciliation in the Senate, which is a parliamentary rule that allows legislation to be passed with a simple majority, rather than the 60 votes it usually takes to overcome a filibuster. Usually this is done for tax bills, but it's also how the Affordable Care Act was pushed through in 2010. So there is some precedent for it and we're going to have to see how that all works together.

Terry Wilcox (18m 58s):
Right. I mean it's definitely going to be interesting. I know, you know, right out of the gate, we're going to be dealing with COVID COVID COVID. I don't think that's really going to change from a healthcare perspective. And I think republicans, they're just going to take a wait and see approach for how they respond to what the democrats do, obviously. Do you think there will be a push, I mean, with a 50 50 tie in the Senate, do you think there'll be any drive for Medicare for all? Or do you think that will be tamped down by the fact that it's 50 50?

David Mark (19m 27s):
Yeah. That seems like a real stretch. You still have senators on the democratic side, like Joe Mansion of West Virginia, Kirsten Cinema of Arizona, Mark Kelly, the new Senator from Arizona who deem themselves more moderate. And they've said that they are opposed to some version of Medicare for all. Now people, senators, lawmakers, politicians change their minds. But at this point, the votes don't really look to be there. And I take the point that the Biden administration is really going to have to focus with COVID-19 immediately before anything else happens. They've got to get the country up and running again. Now there is a push on the House side to use some of the rules over there to get COVID-19 kind of used as a cover to push for something like Medicare for all the progressive caucus in the house is doing this.

David Mark (20m 17s):
There was a rules change that didn't get a whole lot of attention when it was passed the first day of Congress, but it changes what's called the PayGo rules pay as you go rules, which is something that had been in place for decades, suggesting that if federal spending is to be made, that it has to be an offset for it. Basically you have to pay as you go, this was lifted or at least suspended for anything COVID-19 related. So you have some lawmakers saying Medicare for all, or some version of it should be passed under the cover of PayGo. So we will see in Covid, we'll see how that works out. That seems like a long shot, but a lot to keep our eyes on.

Terry Wilcox (20m 53s):
Yeah, definitely. I mean, at the end of the day, the margins are slim in both chambers. It's going to be interesting to see how that all plays out. Now. It would seem the drive to toss Trump's Most Favored Nations Rule, which is not good for our listeners. Are you familiar with the Most Favored Nations Rule? I'm sure you are.

David Mark (21m 11s):
Sure. Yeah, generally so .

Terry Wilcox (21m 13s):
There's a bit of pushback, I guess, pharma and bio and some others sued and it didn't go into effect on January 1st as it was supposed to . One of the things that I do see out of this, and I would love your opinion, is that with the democrats in complete control, he's going to have a pretty easy time getting his appointees through. So whoever's at HHS and CMS, you know, there could have been some stalling though. McConnell was signaling that he was not going to do that. You know, he was going to give an up or down vote on all of his folks. But do you think there'll be a push to overturn this Most Favored Nations Rule by whoever Biden brings in, or I mean, I don't think it's necessarily great news for pharma or bio.

Terry Wilcox (21m 57s):
I just think they might get a chance to do a do-over and have it be a little bit different, like negotiate with Medicare or something like that.

David Mark (22m 4s):
Yeah, it's possible. We're still seeing the president-elect fill out his health team might not be there at the top of the agenda, but it's certainly something that, you know, both sides of the aisle actually have pushed on a bit. So it probably is not an immediate thing, but maybe a year or so into the administration, you could see some more traction on it.

Terry Wilcox (22m 24s):
From a purely political perspective, do you believe that Vice-president Elect terrorists as the tie breaker is enough of a mandate to make the kinds of overhauls and changes we're talking about?

David Mark (22m 37s):
Well, this is where it gets tricky. The hardest, most challenging thing the Biden administration is still going to have to do is push the legislation through Congress because the filibuster rule isn't intact in the Senate. There's no reason to think it's really going to get overturned despite some rhetoric. So republicans still maintain a good deal of leverage and control. Some of these things might be done by executive order and trying to work around the legislative process, but I think there's a real limitation to what the Biden administration can do in Congress, through the public for the public, so that's going to be difficult. What we will see though, are these administration officials confirmed, which you alluded to current Senate Majority Leader Mitch McConnell has basically said he would give votes to everybody.

David Mark (23m 24s):
That doesn't mean they'd all get confirmed, but like Biden's choice for HHS Secretary Xavier Becerra, the current Attorney General of California and a longtime democratic Congressman. He's almost certainly going to get through. Also Neera Tanden at the Office of Management and Budget, which of course oversees the numbers for all of these programs, see how much they and get spent, et cetera. So I think personnel is probably the most important change that we're going to see in the democratic Senate, assuming that does hold.

Terry Wilcox (23m 55s):
Do you think the democrats will proceed? You always think that a party is going to learn, and this is on both sides of that. so do you think they will proceed with caution or are they still blinded by the rage that's built up over the last four years of Trump making them more likely to overreach or less likely, or do you have any kind of feeling for that at all?

David Mark (24m 13s):
Well, they're going to face an awful lot of pressure from the hard left in their party, AOC, Bernie Sanders, some of the other figures, there's a bunch of new freshmen lawmakers on the House side democrats who've just come in and really are pushing a progressive agenda. But they're junior in Congress. They don't have a whole lot of clout at this point, even though it's narrowly divided. And that, that does give them some more clout. I think Biden's a pretty cautious figure and all his appointments so far really point to that. He hasn't had any real radicals in there. I guess it depends on your perspective, but he seems like he wants to be very careful. He's also preaching bipartisanship and a willingness and trying to work across the aisle.

David Mark (24m 57s):
So I think there's going to be more of a centrist attempt, but that may only go so far. And when it comes down to it, pressure from the left may be overwhelming.

Terry Wilcox (25m 6s):
Yeah, and I also think that in the Senate, if you look at the 2022 Senate races coming up, I mean, Warner's back on the ballot again in 22, there's an Arizona race, Kelly's on the ballot in 22, there's a New Hampshire race, there's a Nevada race. I think, you know, those senators that are up in 2022, are going to be a little more cautious.

David Mark (25m 27s):
Well that's right. All these folks are facing reelection and nobody wants to go out on a limb too much. And we are still in a very precarious state in the economy. We, just as discussed, we have to get through the COVID-19 crisis before anything else happens. So it would not be surprising if that took up a good majority of say the first year or so. The Biden administration, we're hopeful to be getting back to normal, say in summer 2021, but we don't really know when this thing's going to be tamped down when the vaccine is going to be implemented widely. So there's a ways to go. And I think that's really going to be the focus going forward.

Terry Wilcox (26m 7s):
I would definitely agree. I mean, I've said to many people, I have seven year old twins. I live in Fairfax County. My kids are not in school. We got a new year. And as far as I'm concerned, I'm still in 2020, you know, until my kids are back to school, this is going and this is not ending. And I think there's many Americans, especially families that feel that way, especially if they're in states that still have the schools closed. So on the republican side, who are you watching in this new kind of world order so to speak the moderates, the Trumpers, who are we watching on the republican?

David Mark (26m 41s):
I think in the Senate, there's a small amount of, I wouldn't call them moderates, but they're deal-makers, Mitt Romney of Utah, Susan Collins of Maine, who certainly is more moderate, Lisa Murkowski of Alaska who could actually make common cause with St. Joe mansion, the relatively moderate, even conservative democrat from West Virginia, if say the four of them wanted to, they could basically take over the Senate and tell both Chuck Schumer, the incoming Majority Leader and Mitch McConnell the soon to be Minority Leader, presumably that we're going to run things because you don't get our votes if we do it your way. So I think they're going to have an awful lot of clout in the House.

David Mark (27m 21s):
It is more of the conservatives who are pushing things because the republicans are within striking distance of being able to win a majority in the House of Representatives. They had unexpected pickups and victories in the 2020 election cycle. They're just four or five seats away from being able to win a majority. And there's all kinds of reasons to think that they are favored to do so in 2022. So I don't think there's going to be much compromise over there. I think it's going to be pretty much the equivalent of a political knife fight. It's going to be tough day in and day out.

Terry Wilcox (27m 53s):
Definitely. I would agree with that. So ultimately, as we close up here in a minute, from your vantage point as Senior Editor of a newspaper covering the Washington circus, do patients win or lose as a result of what's happened this week?

David Mark (28m 5s):
Well, one perspective is that the less Congress does, the better, and I'm not sure a whole lot is going to get done. So from that perspective, I think what we really need to see in terms of what patients are looking for is what might happen with expansion of Medicaid. And also whether some kind of public option goes into place, which a lot of people think would drive down the quality of medicine, R and D research, et cetera. So too early to say, but reasons to be wary about it.

Terry Wilcox (28m 33s):
Well, David Mark, thank you. David is the Senior Editor at the Washington Examiner. Thank you for your time today and for walking us through the politics of patient health on this very big day in Washington.

David Mark (28m 44s):
Oh, thanks for having me.

Terry Wilcox (28m 49s):
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@askusanything@patientsrising.org.

Dr. Bob Goldberg (29m 40s):
Thank you for bringing us that conversation, Terry. And up next is our first Kate Across America segment of 2021. Just like last year, Field Correspondent, Kate Pecora, continues to speak virtually with patients around the country. And this week she spoke with Debbie Lee Flores, a patient who's living with Crohn's disease and her experiences with healthcare disparities

Kate Pecora (30m 6s):
Today, we welcome Debbie Lee Flores. She's an advocate in the Crohn's and chronic illness space. Debbie Lee, It's great to have you on.

Debbie Lee Flores (30m 13s):
Thanks so much for having me.

Kate Pecora (30m 15s):
So let's start out by talking about your journey with Crohn's. Tell me a little bit about your diagnosis and then how you've come to learn how to manage flares of Crohn's.

Debbie Lee Flores (30m 25s):
So I actually didn't know I've dealt with chronic pain issues like my whole life, but I never connected the dots. And I was kind of always that person that was like, Oh, don't worry about it, I'll just find some supplements. Everything would be fine. And it wasn't until I was really, really ill, and I was hospitalized in 2016, that part of the management of that, you know, from that hospitalization, I was required to go through a colonoscopy following that. And once I went through the colonoscopy, they told me, Hey, you've got Crohn's disease, we've done a whole bunch of biopsies and everything came back and this is, and I was like, although it made a lot of sense. It was really scary. I think everybody deals with that. Like, you're just scared when any new diagnosis comes about,

Kate Pecora (31m 8s):
This is a podcast and people might not know that you are a woman of color. Right? And so I think that it's imperative that we not only listen to women, but especially women of color to validate their experiences and to change future healthcare outcomes. So recently you wrote a blog on our Patients Rising website where you talked about the discrimination that you faced in the healthcare setting. Can you tell me exactly about what this specific encounter was and any others that you've endured and what about it was making you feel like you were being discriminated against?

Debbie Lee Flores (31m 38s):
So in the particular circumstance that I shared on that blog, I was dealing with some symptoms that could be, it's when you have constantly, especially as a woman, there's a lot of intersections, right? Like some things you're like, well, is that Crohn's or is that something else? And for me, I have had PCOS since I was about 19 years old, I was diagnosed with PCOS so when something's come up, I'm just like, let me first stop at the OB cause if I go to my GI first, they're going to send me, so it will be why don't you check that out first? So I went in and normally the OBGYN, cause I was at that office for about nine years as a patient, I actually delivered my son there and didn't experience any issues, but a new doctor came to the practice that was from a different area.

Debbie Lee Flores (32m 22s):
And when I walked in and just from sitting in that room, I had the feeling by just the way that I was looked at and the questions that were asked, I was like, okay, you're not even really listening to anything I'm saying, you've decided before you came into this room. But the problem was when you saw my last name on that document and came in and saw that my skin was brown. You already made a predetermination about why I'm here. And once I felt that, I think it's really easy. I've been in circumstances similar to that, like in the emergency room before. But sometimes at that point you're in so much pain that you can't even really think clearly. And what I've learned over time was that if I don't open my mouth and say something right now, I may not be the only person that this is happening to.

Debbie Lee Flores (33m 6s):
And at least at this one doctor can learn from interacting with me. I have to open my mouth. I have to say something.

Kate Pecora (33m 13s):
So a lot of women in that situation likely wouldn't have said anything. And I understand that you did, right? And so there is some pride in the fact that you were able to stand up for yourself, which brings me to the question of about advocacy and about sharing your story. How were you empowered by this experience and others like it to share your journey with others, especially other women.

Debbie Lee Flores (33m 33s):
I think to be honest with you, especially when it comes to GYN or digestive issues, it's just not something that's comfortable to talk about. So a lot of people don't. I made a promise to myself when I was diagnosed, actually, when I was before starting treatment, because before I started on Remicade, which is a drug I'm on right now, I've been on for four years for Crohn's before I started that I was terrified. I felt very alone. And I started looking for like communities and I found there's actually a lot out there, but nobody's talking about it publicly because it makes other people uncomfortable. And sometimes we censor ourselves based on the comfort of others. Like, let me not make somebody else uncomfortable.

Debbie Lee Flores (34m 14s):
And I remember sitting in being faced with this decision about whether I was going to start this very scary drug at the time that I thought it was or I was going to continue living in pain. My doctor said to me at the time, when you really have nothing to lose, you say that you want your life. And you're afraid of being stuck to, you know, having to get infusions every X amount of weeks, but every weekend you're in the emergency room. So what kind of life is that? And I sat, it was, I was actually in the emergency room another time for Crohn's disease. And I sat in an emergency room and I said that if I was going to start this drug, there was no way that I was going to start this and stay quiet. But there was enough people out here that were quiet that when I needed help, no one was talking about it and I had to go digging for answers.

Debbie Lee Flores (34m 56s):
And I said, if I can help one person to not have to dig as much as I did, then I would. And I made that promise to myself when I started treatment that I was going to be open and honest.

Kate Pecora (35m 6s):
So in Tennessee, so have you found sort of communities that are able to sort of, you know, meet newly-diagnosed patients with Crohn's and to give advice to other people who are going through a later stage diagnosis or anything like that?

Debbie Lee Flores (35m 18s):
One of the main reasons why my family relocated here is because Vanderbilt has one of the top IBD centers in the country, which I'm really fortunate that they literally saw my file one time. They were like, yeah, we'll definitely treat you. Cause I I've heard that they don't do that to people. The vast difference from working with those kinds of doctors and working here in this state versus being a patient of doctors that didn't have that detail of a specialty, cause it's like a sub specialty, it's been a world of difference. And so my way of getting that out, because I had already joined a lot of groups on Facebook for prone support and all that stuff, my way of connecting the dots has been, if I'm learning something here, let me share that with the community that I'm already because you'd be surprised how many communities in the United States just don't have access to the specialty.

Debbie Lee Flores (36m 4s):
And I thought, I wasn't going to find it here, but you know, I've been really blessed to have great care, great doctors, and that they've been willing to share that when I say, Hey, can I share this with someone else with, you know, a community online? And they're like, sure, just make sure you make it clear that this was your experience because everybody's experience is different.

Kate Pecora (36m 23s):
Beyond that. It's incredibly stressful nowadays because of COVID. And because of some of the changes that we're seeing in spikes across the country, I know this is very chaotic and that, you know, for people with chronic illness, it could potentially lead people into spirals. How have you been finding balance in this time, you know, with your family, with yourself and with your diagnosis?

Debbie Lee Flores (36m 44s):
It's funny you asked us because I actually shared a few things the other day on the same topic, you know, like how can we get through what's? You know, admittedly been a really crappy year. I think for everybody, whether you have chronic illness or not, it's just been a bad year. The few things that have really helped me have been first access to great care. I have doctors that, you know, if I call, I just had my doctor call me the other day back after I sent him a message. And I was like, Oh, I might hear from him in a couple of days, he called me back right away. So, and that's not always something you do get, but you know, it's not necessarily always the specialty. Sometimes it's just somebody who cares enough to be there. That's part of the medical community that can advocate for you because we don't want to have enough strength to do that ourselves.

Debbie Lee Flores (37m 24s):
The second thing is awareness that understanding not just awareness, like let's bring awareness to this illness, which I believe is very important, but just awareness of yourself. There's no one that can be a better proponents of good health than you like me not playing an active role in my own care is going to be the downfall of anything. So I have to be extremely verbal, open, honest. There's some things, especially, you know, culturally, because I am Hispanic that we just don't talk about those things. And so no, don't tell the doctor about that. No, everything good about it. I'm going to make sure everybody's aware of where I'm at.

Kate Pecora (38m 1s):
Debbie Lee. I want to thank you again for joining us today. It's been really great to talk with you.

Debbie Lee Flores (38m 4s):
Well, thank you. Thank you for having me. I appreciate everything that patients rising is doing for the patient community and the chronic illness community. I think it's a support that we haven't had for a long time. And it's great to know that it's out there.

Dr. Bob Goldberg (38m 24s):
Thank you for sharing your stories and experiences with us today. If there is a policy issue impacting you or a loved one, we want to hear about it. You can share your story with us and become a patient correspondent today. It's really easy. Just send an email to me and Terry@podcastatpatientsrising.org, podcast@patientsrising.org.

Terry Wilcox (38m 45s):
We want to thank you for your support during 2020. And we're thrilled. You're joining us for our second year of the patients rising podcast. We would be so grateful if you could just let us know what you think of the show by leaving us a rating and a review, you can do that quickly and you can do it right now, in fact. If you're listening on Apple podcast, just scroll right down while you're listening and click on the stars to let us know what you think. Thank you to Carol Anne "who recently reviewed us and said this podcast is the best tool for chronically ill and disabled patients. She also said, "our voices are heard, valued and amplified. This podcast should be shared with everyone."

Terry Wilcox (39m 26s):
Wow, that's really great. Thank you so much for saying that Carol Anne. We truly appreciate it.

Dr. Bob Goldberg (39m 30s):
Yes, Carol Anne. Thank you. Thank you. Thank you. That really did make our day and 2021. And like Carol Anne, you can share the episode with your friends, family, and social networks by using the little box with the arrow on whatever podcast app you're listening to. Actually, that's exactly how I describe the icon for my father when I'm trying to get him to click on it. And as always, make sure to subscribe to the patients rising podcast for free on your favorite podcast app.

Terry Wilcox (39m 58s):
We'll be back again next week with another new episode. Until then for Dr. Bob and everyone at Patients Rising, I'm Terry Wilcox. Yes. Still keep your distance and stay healthy.