What Does Patient Advocacy Look Like in 2026?

We explore how HR1, a prolonged shutdown, and agency reshuffles affect access, affordability, and safety for people with rare and chronic conditions. With Dane Christensen and Jim Romano, we translate the DC process into patient wins and outline how your story drives change.

• HR1’s budget mechanics and phase-in effects on healthcare
• Medicaid redeterminations and benefit generosity pressures
• Blood safety funding is maintained, but the advisory body is dormant
• Shutdown delays to bipartisan health bills and why it matters
• Premium tax credits, discharge petition, and likely compromise
• PBM reform judged by out-of-pocket costs, not headlines
• Insurer tactics on third-party aid and accumulators
• Patient choice in specialty pharmacy and continuity of care
• How to brief Congress with clear, factual stories
• 2026 priorities and steady, incremental advocacy

Join us for Hope on the Hill, June 10–11. Share your story or get involved: info@hope-charities.org. Learn more at hope-charities.org. 

Hope Charities is a national nonprofit focused on helping people living with rare and chronic illnesses thrive. Our programs specialize in helping people with genetic bleeding disorders and #hemophilia navigate the challenges of invisible disease by providing emotional, educational, and tangible support. To learn more about our programs, visit our website www.hope-charities.org.

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Transcript

New Year, Advocacy Focus

SPEAKER_02 0:00

Welcome to the Hope Podcast. My name is Jonathan James, and I'll be your host today. It is great to be a part of an amazing organization to start off a new year to help with patient advocacy where we get a chance to talk deeply about patient issues that matter to you and to me. I am excited today to have a great conversation with two friends of mine who have been involved in patient advocacy for many, many years, Dane Christensen and Jim Romano from the Health and Medicine Council, who are going to give us a lot of insights about what just happened. I mean, last year was a wild ride when it came to policy work and the things that we've experienced as a community. And I am really looking forward to going to a deep dive to talk a little bit more about patient advocacy and what's important as we look forward into 2026. But for now, I want to say a big thank you to our episode sponsor, Janentec, for I'd like to start off with introducing our first guest, which is Dane Christensen from the Health and Medicine Council. Many of you know Dane from our advocacy events. Dane, thanks so much for joining us for the Hope podcast today.

SPEAKER_01 1:20

Absolutely. Thank you for having me.

SPEAKER_02 1:23

Well, I also'd like to introduce Jim Romano, the famous, the infamous James Romano. And uh it's great to see you two today, Jim. Thanks so much for joining us for the Hope Podcast.

SPEAKER_00 1:34

Oh, anytime, Jonathan. Thank you for having me.

Origins In Advocacy And Biotech

SPEAKER_02 1:37

Well, I'm really excited to talk about I love new beginnings. I I'm I'm excited about a new year. I think that there's um so many uh you know wonderful things to about getting a fresh start. And this year is uh hopefully no exception. But man, we have been through so many new things in the past year. I I, you know, and I haven't been doing advocacy as long as either one of you guys, you guys have been deeply involved for for over two decades, but um, but as long as I've been involved in in doing patient advocacy in policy work, especially in at the federal level in Washington, DC, uh, one of the things that I've known over the last 10 or 15 years, I have never seen uh government shutdown that lasted as long as it did. I've never seen uh, you know, the the the continuing resolution process take as long as it has. I've never seen uh you know the one big beautiful bill that I I choke on every time I try to say that phrase. Um but some of the things that we've seen have been really, really new and and and at the same time, there's a lot of continuity. There are some things that are the same, the procedures are the same. And I have a difficult time sometimes wrapping my head around all of those things, but you guys are really, really experts about that. And I want to dive into a lot of those issues. Um, but really, I'd like to start maybe for people who are listening to this podcast today who don't know you as well as I do, I'd like to start off with some introductions and uh just get a second to be able to learn a little bit more about your experience. And Jim, I'll start with you. You've been in patient advocacy work for decades. I mean, you're ancient at this point, just kidding. Um, but you have been around for a long time. Tell us how long have you been involved in patient advocacy and and and kind of your background and getting involved in this type of work?

SPEAKER_00 3:24

Um, 31 years, if you can believe that. I can't believe that, but it's been 31 years. Um March of uh 1995, my uh uncle Ed Burke came to Washington to advocate for the Ricky Ray bill. I was a freshman in college, and he said, Well, let's get together for dinner. I'm gonna be in Washington. And then he said, Well, why don't you come to Capitol Hill with me? And I did, and that was we went to our first meeting with um, I think it was in Congressman Tom Fogley at his office, who's not even there anymore, um, in uh from Philadelphia, and we worked and got him to co-sponsor the Ricky Ray bill. And I'm like, I want to do this for the rest of my life, and sure enough, 31 years later, I'm I'm still doing that. That's amazing.

SPEAKER_02 4:14

Yeah, that's amazing. I I you know the the it's amazing sometimes the things that are the catalyst to helping us to get passionate about this. And uh I'm I just appreciate um you know the fact that you're you're personally connected to bleeding disorders, specifically hemophilia, obviously, with your in within your family, and uh love love to have your experience as as uh a leader in this space. Dane, I'll I'll ask you the same thing. Tell us a little bit about how you got involved in patient advocacy and and what gave you the desire to do what you're doing today.

SPEAKER_01 4:46

Yeah, absolutely. And what I'll mention um to start from the start is I grew up on the uh north side of Chicago. Um and uh people when they think of biotech, they think of the Bay Area of uh California, they think of the Bay Area of Massachusetts, but um Chicago, particularly the north side of Chicago, has an awful lot of biotech as well. And when I was the age when Jim was advocating for the Ricky Ray bill, um we had just mapped the human genome. Um, this was going to be a watershed moment in medicine. We're gonna cure every single condition under the sun. And I'll just tell folks I've been doing this um work since 2004. So that tells you kind of the timeline it takes to get innovation and kind of scientific breakthrough at the research level into commercialized product that people actually use and doesn't just end up in a journal that sits on a shelf. Because, you know, even just a couple of years ago, we started to see the first results of that breakthrough with um the first gene editing technologies coming to market. So um, I was always very interested in that part of it. But my congressman was also a gentleman named John Porter, who was the head of the um appropriations subcommittee in the House of Representatives that funds medical research and NIH and public health, the Department of Health and Human Services. And, you know, um he um was a middle-of-the-road practical person. You kind of have to be as a committee chair. Um, but I think folks might remember um this was the contract with America years, you know, Newt Gingrich is speaker of the house, Bill Clinton is president. So if you think now as kind of a time of discord and division, you know, Congress is always in a little bit of that state. But even with those types of differences, they still manage to double the budget and double the funding for the NIH. So that type of work goes on in Capitol Hill every day. Um, I find it very encouraging. And um, I'll just say, you know, the progress is what you kind of keeps you interested over all these years, but I don't want to filibuster this meeting, so I'll hand it back over to you, Jonathan. But thank you for giving me the chance to introduce myself.

The Power Of Patient Stories

What HR1 Actually Does

SPEAKER_02 6:54

Well, it's that's really thrilling. I actually, it's interesting you bring that up. I is as much as we've worked together, I I forgot that you started out in biotech, and uh it's amazing to see the progress and the change that happens. You know, one of the things that I'm really passionate about, obviously, as a person living with a bleeding disorder and somebody who's been impacted by bad policies, I am ever amazed at how uh so many times um, you know, it's an education uh gap for these people who are in leadership roles that just don't know that we're going through difficult situations because policies didn't either A didn't consider what our needs were as a community, or B, they they were created by people who are intentionally trying to create barriers for access and and and need for these high-cost medications and or treatment. And uh, and so anyway, I'm just ever amazed at how sometimes something so simple as the patient voice, getting an opportunity to share our story can make such a big impact in helping these people who really genuinely, most of these people who are elected officials, want to help. And and I think that that's something that's really powerful is that if we could share our story, it gives us an opportunity to be able to help elevate the need so that they're educated enough to know that when these policies come to a decision point, they have the ability to make some of those decisions. Um, the challenge is that there's far more people sometimes that are trying to make profit uh that that don't uh appeal to what our needs are and maybe can stand in the way of that. And so I really tremendously value the work that both of you have done throughout your whole career and through your tenure and appreciate the fact that you guys are still uh at it today and and depend on your your knowledge and your uh wisdom uh in in helping to advocate for people like we do every day as well. So uh thank you for what you do. Uh I want to kind of zero in a little bit on modern history and talk a little bit about these current events that have happened over the last six months because there has really been a lot of change that has happened. And and uh for all the things that we have seen in the last 20 or 30 years, you know, maybe there's a few things, as I mentioned before, that are different this go-around. Uh, but I want to start with HR1. I want to start with this one big giant bill and uh and talk a little bit about how it impacted healthcare specifically. And so uh Dane, while I got you on the hook, I'll I'll I'll punt it to you first. But I'd love to know just your thoughts about what was HR1 and how did it impact healthcare specifically.

Medicaid Changes And Timelines

SPEAKER_01 9:29

Yeah, and I think it's important to say impacting, because this was a budget bill. Um, budget bills are written for 10 years, um, and they are phased in slowly over that time. So uh Congress often revisits the policies that are implemented, either um as they're implemented or ahead of their actual effective date, which is a reason why it's always important to make sure your senators and representatives know what you're concerned about or how you might be affected. It's not a done deal. Um you can always weigh in and make a difference, and they want to hear from you. They know you have a pure self-interest. Um, and if there's something that's that's going on, um you can provide them with that information. They need to make good decisions. They can do the politics stuff in front of the cameras, but they want to make policy in a way that works for the folks that they represent. So, what the one big beautiful bill act was was a budget reconciliation bill. So we have a new Congress that took it that took effect. We have um uh a narrow Republican control in the Senate, very narrow Republican control in the House, and Republican president. And usually if you're passing any bill in Congress, you have to have bipartisan support. The process is such that everyone has to agree, and that's how things get done. If you don't agree, then nothing happens, and that's why they the same issues are fought about over and over, but progress is often made right in the middle of the road. So um, when you have one party control, though, you get a little bit more latitude. You can pass a bill, um, a budget reconciliation bill, that has to, but the caveat is it has to do with policies related to taxing and spending money. This is like kind of the fixed costs of the federal government. Um, but it gives you a chance to pass these bills on a party line fashion. They only one party can needs to approve them. If everybody can agree in this case, then that can get enacted into law. So it's a vehicle that exists outside of the normal process of you know everybody deliberating and coming up with a middle-of-the-road solution. So um uh this this is why it got so much attention. And it was a broad sweeping piece of legislation. It not only affected um what uh things like Medicaid, um, it also affected supplemental nutrition assistance, it affected student loans, these parts that are kind of part and parcel to the federal government operating. Uh, and uh once again, a number of these changes were announced or implemented, but are phased in over a number of years. And it's not uncommon for Congress to go back and revisit them before the effective date. Of course, every Congress is gonna legislate in the way that it wants to. Um, and stuff that's passed in terms of a 10-year bill is usually only good for a it has a couple year shelf life. And then, of course, new folks after the next election are doing their own thing and listening to input from their constituents. So um uh what it did do though was we knew there were gonna be changes to Medicaid. Um, and you might recall that there was a lot of talk about reducing federal spending or things getting, you know, we're gonna spend less money. Um uh and the only way to spend less money is if benefits are less generous. So, and when it comes to changes in the Medicaid program, there were certain realignments that were proposed and going on, some that had to do with um uh eligibility or needing to continue to show or demonstrate that you are eligible for Medicaid benefits. Um uh, whereas it used to might it might be that you were checking in once a year, now you might have to check in a couple times a year. So that type of compliance. So folks are taken off the roles earlier if they have you know something that disqualifies them from the program. And when my lights decide I've talked too much, they turn off on me. So this happens, this happens without fail. But then and then the other thing that occurred was um there's a lot of there's things related to how generous benefits are, so calculation of the federal poverty line that was another consideration as well. Some of those things took effect early on, others are gonna be phased in later um down the road. So um I'll just take a pause there in terms of kind of what happened was it's a budget reconciliation bill, has the ability to pass with one party preference, which makes it a little bit more politically divisive. But the caveat is it can only be things that have to do with taxing and spending money, and um, you have to make sure everybody in the caucus agrees. So everybody had to say, okay, we're all on board with this, which in some ways would shed some of the more extreme positions, even though it's not going through the normal legislative process.

SPEAKER_02 14:01

And from a procedural standpoint, this is not uncommon to government, right? This is something that happens every two years, right?

SPEAKER_01 14:09

Yes. If you have the ability to pass a reconciliation bill, you are going to try to pass one. Um, and it's really a question of realigning with your priorities. And it wouldn't, it would be uh a safe bet that in in a couple years, um, if there's a change in Congress's composition, they are going to use their legislative um authority to pass another budget reconciliation bill. This bill is not the law for a decade, um, it's the law for right now, and Congress can revisit the law whenever they like. So um, they will likely continue to tweak this law itself as they hear from people or as they try to deal with some of these things. This is a fast-moving process and it's a 3,000-page bill. So they're likely to go back and tweak things if they need to. They can do another reconciliation package this year if they if they feel like it. But of course, um, we're gonna have a new Congress, uh 120th Congress in 2027. They probably aren't gonna say, well, geez, the last Congress did this 10-year bill, so I guess that's it. They're gonna want to put their legislative stamp on things, and they're likely to do their own package if they can.

SPEAKER_02 15:15

Yeah. Wow. So I you know, I'll say that um uh, you know, with all of these changes, there was a lot of activity that we started to engage patients on that were concerning to us, such as you know, the extended uh tax credits being cut and potential for Medicaid, obviously the the the uh you know able-to-work policies and a lot of different things that really took a lot of activation from our community to communicate. We were concerned about the blood safety division being uh you know uh uh shut down during this time frame as well, because we just had no communication uh in some ways. So, Jim, tell me a little bit about from your perspective, uh, while this was going on, what made this unique to our community that that really was uh potentially harmful? And then kind of where's where's the status of some of those things we were concerned about in the fall?

Agency Cuts, Reorgs, And Pushback

SPEAKER_00 16:10

So um at the beginning of um this administration, the president nominated uh Robert Kennedy Jr. to be the Secretary of Health and Human Services. Um Secretary Kennedy has an idea of what he thinks healthcare should be. And then couple that with um the president also brought in um uh um Elon Musk and created this department of governmental efficiency doge to help reduce the spending. And there was a a tremendous amount of cutting. And with the CDC, um, which I would say this administration was is not a big fan of the CDC because of the COVID epidemic and um and public health in general, um, there was there was gonna be a tremendous amount of cuts. And it did hit the um Office of Um Rare Blood, um, which houses several programs for the hemophilia community, the disorder community. And so a lot of I I I want to be very fair here. Um there they they cut some of the staff, and and that was a big deal. They were they were starting to eliminate the staff. Um but one after a certain amount of time, when it they they also brought the staff back. So why was that? Well, they had their ideas, they wanted to create, they wanted to do a realignment in the health, um in the health agencies. They wanted to create a new uh what I would call a new agency called the Make America Healthy Again Agency, and they wanted to do away with the health services and resources, HERSA, resources and services administration. Um what I couldn't ever understand is why they just rename HRSA Maha, but you know, nobody called me and asked me what I thought. Um and so there was going to be training different offices within these entities. And so um as soon as they just um as soon as you know Congress started asking questions, several of these um, I would say staffers were being brought back into it, into these agencies. Um and then Congress made it very clear that they were not going to do any kind of realignment with the health agencies, nor were they not going to fund a lot of these agencies. I would say the bleeding disorders population has a very um community has a very uh they're very known on Capitol Hill. And so um you know I from what I could tell is the you know the advocacy worked, the members of Congress are very clear that they're gonna fund these programs. In fact, uh, because of Dane Christensen's efforts, um, we've gotten additional funding into rare blood for another rare blood disorder called immune thrombocytopenia ITP. Um, so the the Congress is listening. Um so pulling your hair out, setting your hair on fire isn't going to be the way to deal with these type of things. Um but uh I I would I would say that the administrator administration tried to make a lot of changes. Um Congress has stopped those changes. And um and it's because of advocates like the bleeding disorders community, like the ITP community, like the other rare blood communities that have really um been championing um uh their advocacy has helped um keep the status quo.

Community Mobilizes Amid Confusion

SPEAKER_02 19:51

Yeah. So so so you know, one of the things that I noticed is that there was this sense of like kind of chaos and and urgency. And almost a little bit of just it was so much confusion, you know, surrounded around the process and what was going on. And I think that, you know, in some ways there was this like fear and worry. We activated our voice. I think many people in the in in rare disease and chronic illness uh broadly were activating their voice. I remember Jim, you and I stood out in front of one of the buildings one day for like an hour just to get into the Rayburn building or something like that, never seen that kind of line before. I mean, there was every group from every place that was literally out there trying to advocate and have their voice heard. And like you said, I think the fear of the worry was that there was no listening. I think there was some listening. Um, you know, but but I guess, Jim, for you, do you think that it was as bad as we as our worst fears, or do you think there were some things that were finalized that that weren't maybe as bad as we thought it was gonna be?

Was It As Bad As Feared

SPEAKER_00 20:57

So I've always known it's never as great as anybody promises, and it's never as terrible as everybody dreads. Reality somewhere in the middle. Um Medicaid, there there are gonna be some interesting maneuvers with Medicaid. Some people are going to lose their coverage if they don't produce um the work effort that the CMS is asking for, and the state Medicaid departments are. Um I can I can tell you this, um, and I'm proud to say this, that Dane and I um brought you and a lot of the Hope people to Capitol Hill. And because we didn't demagogue the issues, we had a very fair hearing on what we had to say to congressional offices. Congressional offices weren't closed to us. Um, whereas towards the end of this debate in June and July, or I would say May, June, um, a lot of offices like I can't take another meeting to talk about Medicaid. Um, I was in a meeting with an advocate who did not know what they were talking about and angered the United States Senator staff much um much to my chagrin and much against my recommendations. So um because they they didn't have all the facts about the changes to Medicaid. So I was gonna say that um that Hope Charities has done a very good job, and I hope it's because we've um Dane and I have projected a we're remaining calm, we're not getting into the uh demagoguing of the issues, and we're going to give everybody fair hearing. And I think that's earned a lot of respect on Capitol Hill for this organization for the community.

Blood Safety: Funding Vs. Dormant Advisory

SPEAKER_02 22:49

Yeah, I appreciate that. I I feel like that that's core to what you know our mission is is to keep a level head, number one, and and core to our values, I would say, but um not to get caught up in the emotion of it. And what's hard for you know me as a patient and so many of the people that we um are you know trying to bring along this journey uh in the patient population is that it is personal. There's just no way around it. It's personal. And um there is a reaction of fear and worry and and concern and you know, and and I I I just feel like that um I really appreciate the fact that you've been uh a level-headed, you know, advocate and and and advisor in that way to help us to stay on track with that uh and and really to quell your own emotions. I mean, I've I've you know known you long enough that I had the opportunity to know that we both get on a call sometimes. We're like, oh my gosh, what in the world? You know, and then but at the same time, we are able to go and say, okay, now what's the strategy? You know, I think being strategic in our in our process of how do we communicate what the most important need is and how do we woo them along. It's the old adage that you can attract more bees with honey than you can vinegar. And there's a there's an element to that that we need the support of these offices and these these uh healthcare advisors in these offices to be able to make certain that our issues are elevated and that we're respectful. Um, and that's not always easy when you feel like that you're you're uh you know, your life is at risk because of the policies that are happening. One thing in particular, Jim, I know you're very close to this issue, is um, you know, we were very concerned that the entire blood safety division was going to be canceled and and totally uh done away with. I don't think that that is uh the whole story, and and based upon even what we saw in HR1 specifically, it looks like it was level funded or maybe even increased, if I'm not uh mistaken. And it sounds like that there's still some some questions to be made, but I don't I don't think it's quite as bad as what we were fearful of initially. Is that right?

SPEAKER_00 24:57

Well, okay, there's a couple of things on that one. Um the um HERSA and CDC hemophilia programs and blood programs have been level funded. So um the the funding is there. So that's the good news. The the bad news is the advisory committee for blood and tissue safety, which um after the HIV infection in the community in the 1980s, was kind of a sounding board where people can bring it uh where there was consumer members, there was physicians, um, that and they built consensus on um different disorders that are in the blood supply at viruses that could potentially have been problems. And um, you haven't seen the widespread problems that you saw in the 1980s from that point on. Um, I think is a victim of its own success. This administration has, I don't want to say they've disbanded the committee, but it has gone dormant and it's not meeting and it's not advising the administration on blood policy, which um it had been doing before. That's troubling. However, the blood products advisory committee at the Food and Drug Administration, that is still as of right now, meeting. So that so um I would suggest that some of the pillars that we built after I would say the Ricky Ray experience um have been removed, but some of the some of the pillars are still there. Um I I just it's a shake year now. Um I know that we would like to work to see that the advisory committee um starts meeting again and it has patient voices and has expert voices on it. Um I think that Americans should should demand that because we all have blood. Um and and it all and and one something that we're not foreseeing could become a problem. And this was a a committee that could alert the federal government and the administration, whichever administration it is. I'm hoping that the next administration will re revive, you know, um start utilizing, you know, and take this, make sure it's not um the this advisory committee is not dormant anymore and and allow it to start meeting. So um I'm I'm consistent. Um the money is there into the agencies, which is a good thing. We should probably still have to restore staff some staff. The the truth the only troubling part of this is that a lot of Republicans and Democrats have asked questions of the Department of Health and Human Services, and they've all come back to me and said they're just not responding. They're not responding to Democrats, they're not responding responding to their own Republicans. That's the troubling aspect to me is that the really the only way you're gonna get answers out of the Department of Health and Human Services is by having them in front of Congress and Congress asking the questions right to the um the secretary. And and I think that's a that's a bigger concern um at this point.

SPEAKER_02 28:15

And and Dane, specifically on the continuing resolution side, I do think that it is a good thing that the funding is at least still there so that we know that it there's a there's a plan in place likely for this to come back, even if the structure is not clear at this point. Is that is that your assumption too?

Congress’ Role And Oversight

SPEAKER_01 28:31

Yeah, I would remind folks that you know there's sep there's three separate co-equal branches of government. Um, and we have live in a country that has free speech, which means you can go in front of a podium and say almost anything you want, but the policy-making apparatus, the law is very different. Me saying something at a podium doesn't change the law or what the policy is, it's just me talking, and that's part of being an American. But um, the thing to remember about the process with those three separate coequal branches of government is that nearly all of these decisions go through Congress. If you want to create a new agency, if you want to consolidate staff into this new entity, you can say you want to do that and you can start firing people, but ultimately it is your senators and representatives that decide what happens. And this time around, they said we're keeping everything status quo. We would even keel, you know, no major changes. And that means that the money is there for the programs that we traditionally um support, and we expect that they will start rehiring staff. But of course, you know, the squeaky wheel really does get the grease. So if people didn't, the the administration is not set up to take your input and respond to you. That's not their function in the federal government, neither is the courts, the other branch. The the people who are supposed to do that are your senators and representatives, and they have the power of the purse and they have oversight of federal agencies. And if they put into a bill the advisory committee on blood and tissue safety needs to start meeting again, and here's their directives, then there isn't much ambiguity about what's going to happen. But if you don't tell them there's an issue, similar to not clearly explaining the gaps you might be dealing with in your own coverage or access, they don't know how to help and they're not just going to voluntarily try to figure it out on their own. They very much respond to constituents. It's a member-driven process, but the members are driven by the people they represent. And if you're a rare disease community, it's very important that you be that voice because there's a chance there aren't a hundred other people in a similar situation where somebody's just saying, Well, I'll I'll be the one to have the meeting where I know the congressperson. If you're not doing it, you know, who will? So we encourage, um, but the important thing is the members are listening to you just as much as they're listening to what the White House is saying on any of these policy decisions.

Why The Shutdown Dragged On

SPEAKER_02 30:43

Yeah. Yeah, that's a really good point. I I do think that you know, some of these tensions were also part of what led to the government shutdown, if I'm not mistaken. I mean, that this was there was you know a lot of contingent. We saw a lot of headlines. I I do believe that unfortunately, in our in our, you know, you mentioned free speech and you know the media and and so much of our even social media, it just there everything is, you know, when I used to be in financial planning, we used to say that everything is driven off of fear and greed. I I think sometimes in in media, the only thing that gets attention is the the extremes, right? It's really not what maybe the substance is in the middle, like you said, Jim. And I think that um, you know, it's important that that uh we kind of look back at this. So so my question is like, Dane, what the heck was the government shutdown about this time? And why the heck did it last so dang long?

Delayed Bills And Real-World Harm

SPEAKER_01 31:39

Well, I'll say I'm glad I do well. The the short answer is politics, so but I'm sure that's not necessarily what's going to help anybody out. But the um reality is we had a 43-day shutdown, the longest government shutdown in US history. And policy isn't why the government got shut down, because the reality is, you know, we had a bunch of bills that need to move forward, and Congress is fighting about these high-profile issues, but the process is still moving a number of initiatives forward calmly, quietly. They don't get any attention, but it's still happening. There's hearings going on today and this week where they're moving bipartisan bills forward. So the idea that Congress isn't doing any legislating is not accurate, but they're fighting about things, and the and you're right, the the fighting is getting all the attention. When they're doing the stuff where they work together and there's no real drama, that doesn't get any uh attention at all, but it matters. Um, but what happened with the shutdown specifically is that it continued to delay work on a bunch of healthcare stuff that should already be done. Um, we have prior auth reforms that are being considered that are very bipartisanly supported, but haven't gone through yet. We have a bill called the Safe Step Act, which had 250 co-sponsors in the house, way above, you know, 50% support. That hasn't gotten done yet, and more critical and timely things, like reauthorizing the pediatric priority review voucher program at FDA for rare disease innovation and doing things like the Kids Access to Care Act, which everybody agrees is a good idea to let kids in Medicaid and chips see providers across state lines without going through a bunch of hoops. Um, but that stuff is all delayed. So the real harm of this is a delay. And the reason for that is they say, you know, Congress works for crisis or Christmas. So a lot of this legislating is done at the very end of the year. Um, and and that's when the shutdown occurred. Um, the shutdown occurred basically from October through November. And the reason you have a government shutdown is when both sides um politically feel like the shutdown will benefit them. And what we had, um, what happened right before the shutdown ended was we had an election. Um, and that was the key reason why we were in this stalemate. Um, there were a bunch of state and local races that were being run, not the big Congress ones and not the um ones that occur every couple years. But um, and there was this whole discussion about healthcare affordability. And there were a couple of things that happened as a result of that election. One was that you had a lot of people who leaned into this message about health care and access and affordability. Those folks won. And they were kind of a younger, you know, generation, a new um new folks on the scene of politics. And the immediate first thing was the old guard said, Well, I guess I'm a little bit out of touch at this point. I'm gonna retire. And we've seen um, you know, not to I'm not not to cast dispersions, but one of the first things that happened was Nancy Pelosi said she's not running again. Um, just today, there's a guy named Stenny Hoyer who's been Democratic leader for decades that said, time to turn the page. So this is the kind of message that gets sent. But on a policy standpoint, the other thing that happened was Congress noticed this discussion about healthcare affordability, access, and coverage is really important to a lot of people. So then almost immediately with the government reopening, you had Democratic and Republican proposals on how to make healthcare more affordable. Um, and of course, you can't have one party support. So there's gonna be a forming, norming, and storming process where they have to negotiate a middle-of-the-road solution. But now everybody is talking about this again, and there are vehicles moving forward legislatively that are gonna be focused on healthcare. Um, and they're gonna be things that are that everybody agrees is a common sense good idea. But what the what the shutdown did and how it was resolved pushed healthcare and specifically patient out-of-pocket costs back to the forefront of policymaking. And that's why it's even more important that folks share their stories as policymakers, decide how to solve some of these issues because it's a safe bet that if you were just elected, you know, um, and you've been in Congress a year, you might not know everything that you need to know about the rare disease experience to figure out how to handle policy making for someone's healthcare cover to access either private pay or federal programs. But you know, that's kind of the long and short of it. The short answer would be politics, the longer answer is there's implications um in terms of specifically how they're now handling healthcare. And we just saw that um with this advanced premium tax credit debate. So, you know, that was an issue where Congress had said, you know, these tax credits are expiring, they were designed to expire, it's over. And because people are so concerned about their premium costs, they're still today debating how they are going to solve this issue and potentially even reinstate these tax credits or do something different that will provide equal relief for what people are personally paying for their health plan premiums.

Premium Tax Credits Back In Play

SPEAKER_02 36:49

Yeah, you know, one of the things that we were super concerned about was the cost of insurance premiums going up exponentially. And it's interesting because um you mentioned these in tax credits. I think that the people need to understand the history this came about is because originally in 2009, when ACA was enacted, there were certain uh things that were enacted at that time that made sense economically by what was happening in the economic landscape in 2009. Uh health insurance premiums have traditionally increased year over year between you know seven to eight percent every single year. There has been extremely uh you know big jumps at times. Um, that's not new. Uh and and there's a lot of again, theater uh that's sort of portrayed in these extremes that you see on media, but sometimes uh the the the premium increases continue to go up. The cost of medication has gone up, yes, and the cost of care has gone up, yes. But I think the issue here is that Congress enacted these enhanced tax credits uh at some point kind of uh several years after ACA had been enacted because they realized that 400% of federal poverty level was probably a little too low, and also that the premiums had gone up, and and even with tax the tax credits of the the um you know these the premium assistance that was being provided through the marketplace was not enough to still keep it affordable. So they gave additional uh tax credits to be able to help people to afford it. You know, the what what what essentially what changed, if if I'm understanding this correctly, is that in one big beautiful bill, they they basically said, We're not we're gonna let those enhanced tax credits expire. And that's where really the the the the stalemate came in to where they said, Hey, we're gonna hold you accountable to this. And and and again, the elections were sort of a pawn to sort of like, let's see if we can get some other people in in these roles to help to move this needle forward. Essentially, that was said what what what what one party said was, hey, let's this process is debated on the floor every day, let's put this back on the floor where it should be in subcommittees and committees. And by doing so, there it's you're not basically being held hostage to this concept of the total budget and all of this stuff. So a lot of moving parts going on here, but essentially that debate has not stopped, even though HR1 was enacted, the actual uh enhanced tax credits is still being debated even on the floor now. Is it am I correct in saying that, Dave? Actually, exactly today.

How To Talk To Congress

SPEAKER_01 39:22

But um, Jonathan, I think what this speaks to is a broader um point about um uh Congress and also how folks can engage with it. So if you're talking to your member of Congress, it's not materially significant to say I am pro Medicare for all or I am pro, you know, healthcare savings account or some other position that you might see debated ad nauseum on TV at night. What's important is that you tell them what your situation is. This is what happened to me, and be honest and factual. They need to work with their colleagues to solve those problems. The other stuff that gets that's thrown on there is window dressing, what they need. To do is work for you, and they can do that if they know your story. But the this is all part and parcel to a broader debate about affordability. The concept of pharmaceutical benefit manager reform, which has been going on at the same time, is happening on Capitol Hill because Congress said we vertically integrate a bunch of these health activities, then we should generate savings. But there was vertical integration and costs went up. So they're saying, how did we this end up more expensive with economies of scale? Um, the what matters when they try to solve that problem, though, is not that some middle manager can claim a bigger discount on a drug. The only thing that matters is that do your out-of-pocket costs go down at the end of the day? So that's why I think yeah, this that the the the ecosystem is going to be what it is. Your voice on Capitol Hill matters when you are honest and accurate with your story and you say, and I need your help.

SPEAKER_02 40:53

That's good. And Jim, you you've been working at this at nauseum. I mean, there is so much happening here, but really and truly, again, the enhanced tax credits might be able to come back in play. I know that's being debated literally today, but like what what does your gut feel on that?

The Discharge Petition Gambit

SPEAKER_00 41:09

I think there's there's gonna be some kind of um compromise. Um, so it's interesting. One of um one of the patient assistance organizations did some analysis of their data on on what the um what the increases were gonna be. And there was like a across the board, 22, 25 percent increases in people's um individual um premiums because of these, um, because of the expiration of the tax credits. We were able to help them and put that in front of congressional hands. And I gotta tell you, I heard about five or six congressional offices saying thank you. And those were Republican offices saying thank you. The test vote yesterday. So this talk about an arcane process. And we used to bring up this process when we're talking about Ricky Ray, but it's the um in the house, it's this um discharge petition. So if you get 218 congressmen to sign a petition, this discharge petition, it it it moves the bill to the floor in a certain number of days. And so because the the majority that the Republicans have is a very small functioning majority. And it got to be even less this week with the um resignation of um Congresswoman Marjorie Taylor Green and the death of the Congressman Um Mahoffa out of um California. Um it's a right now, it's at two, two seats. Um you you you know, there really isn't that much um uh wiggle room. So, and a lot of these moderate Republicans, Mike Lawler in New York, um, there's three in Pennsylvania, um there's a moderate seat in Nebraska. They know that if they don't do something, that they're really in danger of losing their seats in November. We're talking history, I will say this, politics is like is is circular. Um, or I like to say, because you know, a Democrat's in office, the Republicans are going to look to win the House and the Senate and do well in Congress. The Republicans are in office, the Democrats are looking to do that. Very few times in history has that not happened right after 9-11 that the the Republicans had a great midterm election. Other than that, the midterm elections really do go against the party in power. So they're trying to mitigate that right now. And so um fat, you know, to me it's fascinating. But um the repo the Democrats are really actually trying to help the American people, I think, um, blunt this. And two, the Republicans actually want to join join them, at least a number of them do. So um several of them signed this discharge petition. The speaker of the house has been very clear he doesn't want to have a vote on these tax credits. He he's been very clear about that for as long as he's been speaker of the house. Um, love him, dislike him. That that's his position. Um so why I'm saying this is they had that was the last like that's what they did. They uh Republicans signed the discharge petition. Yesterday, when they had a vote, um, like nine Republicans then joined the Democrats. The vote yesterday was a test vote. Like the speaker was trying to overturn the discharge petition, and he lost by nine, nine Republicans sided with all the Democrats. So now, and we're talking about like Maria Salazar, we're talking about some pretty conservative um leading to conservative Republicans joined in, Jen Kiggins, those guys over there. So now you're gonna have a vote in the House. It's a three-year extension. Um there's no way that's gonna pass in the Senate. However, Senator Bernie Marina, who's a freshman senator from Ohio, swing, not a swing state, but a Midwest state where this is gonna affect patients, has come out now and said we're negotiating. So what I anticipate happening will be a two-year probably extension. And then that will and then a two-year uh extension with some caps, although they cap the FPL, probably. Um, and so that's what I'm looking at right now, um, which I think will happen. The the problem, I think, that it actually hurts a lot more than it's running into the fact that the CR is going to expire on the 30th. So they have to get all this done kind of quickly um by the end of the month, both the tax credits and passing the um the budget for the end of the year. Now they can kick that down a couple of weeks uh with the budget, but um, but everything's starting to come all at once. So um and college can do multiple things. Um, but it it's an it's an interesting time. Um, it's an interesting time to be at a new firm working um with my um great friend Dane and uh working together and talking about these issues every day now.

Premium Spikes And Likely Compromise

SPEAKER_02 46:02

That's amazing, really, that that um you know, I I one of the things I I always love about you, Jim, is that you're always a student of the process and that you're you you just are fascinated with it every day, no matter how long you've been at this. And so uh that always encourages me uh, you know, on uh you know, just just that sometimes uh it's fun just to just to be you know observant, no matter what your own, you know, personal political persuasions are. But at the same time, um I think that the what it really takes to be successful as an advocate is that we have to be students of this stuff because if we don't know the what the conditions are of the weather, we're not gonna know how to steer the ship. And so I just think that your your um your knowledge base in that is so super important, but I love that you're a you're a student. It it you're kind of a an advocacy advocacy nerd, and uh I love that about you because it really helps to bring uh clarity sometimes in these things and also take some of the emotion out of it because I I be honest, we I watch TV and I want to throw something at it half the time. So I'm uh I'm glad that you're you know you're sticking in there. But it's good to know that these enhanced enhanced tax credits are still in debate and they may may be reinstituted to some degree. Um, I know that I can say this from a financial assistance point of view. We did see quite a bit of an increase for a lot of folks, even this past open enrollment of about 30-35 percent or so. Um, there were some folks that had doubling and tripling uh of the of their uh you know premiums on ACA plans specifically. Um, and those were people that were on the outliers for sure, but they definitely are are people that are in the risk zone. So hopefully, if these enhanced tax credits do improve, that could maybe maybe realign some of that. But it brings up another issue that you and I, I don't want to get into too deeply today because I know our time's coming to an end here, but I I do do know that this really brings up another issue uh where patients being able to leverage financial assistance programs and get access to financial help from charitable organizations like ours or or like the Pan Foundation or you know, some of these other groups out there uh are so important for people to be able to access that. And there's been policies in place like the Copay Accumulator, for instance, or uh, you know, these maximizer programs, AFPs, all these other types of things that prevent people from accessing their medication because they can't, because of lack of affordability, um, really get in the way of that. And I think there's plenty of opportunity for that where we need to be uh locked and loaded, ready to advocate and speak up and share our story about these types of issues as well, because uh it all kind of ties in together, don't you think, Jim?

Third-Party Aid And Insurer Tactics

SPEAKER_00 48:49

Absolutely, absolutely. Um I would say so you and I had worked together on and and Dane, the three of us actually had worked together back in 2016, 2017, 2018, um, on the um Access to Marketplace Insurance Act, because um as um these Obamacare marketplaces were coming into uh existence, uh CMS for god only knows what means and to keep these insurance companies happy, um decided to allow them to not accept third-party assistance. So with the one hand, they say, oh, you can't deny a person for having a pre-existing condition, but uh, but you don't have to accept any assistance on their behalf, uh premium assistance, which just really um was an in was interesting. I I find I do find that an interesting problem. So then um moving forward, COVID hit and there wasn't really, you know, the it we've all learned, uh I think a lot of the patient assistance groups built workarounds. And so now you um but now I love the fact that as the tax credits were expiring, the the insurance companies started sending letters again saying basically, oh, um, by the way, you can't get help with your premium, knowing full well that these people who have gotten these plans and have gotten these enhanced tax credits and or who are losing them are now gonna look for people to turn to. And they made damn sure that they told these people, well, you can't turn to a charity. So I, you know, in in conversations with you and with Dane, I went back to one of our sponsors and said, Hey, you know, you won't believe this. And and they weren't shocked, obviously, but they said, Well, find us some some people who are also interested in in um on bipartisanly, and we might have to start advocating for this as to change this policy again. It just I will say this the Republicans are really starting to turn against the insurance companies. Um, if you would listen to John Thune, Donald Trump, and a lot of other Republicans, there is a, I would say, a skepticism about the insurance companies. And um, so I think we're actually probably in a better position right now to um to try to change those kind of anti-uh patient policies because um the insurance companies, uh health insurance providers are not being held in a high regard. I just hope other parties don't decide to adopt them then, but you know, we'll see what happens.

Momentum On Patient-Friendly Reforms

SPEAKER_02 51:38

Yeah, there always seems to be more people uh in favor of big business than they are necessarily in favor of the little guy. And uh it's kind of a David and Goliath story sometimes. We have this little bitty pebble that we're trying to put in a slingshot and you know, and uh and try to uh influence, you know, uh to look out for ourselves and and and to survive. And and unfortunately, um I think you know, you you both said it, but being able to share uh your story of what I love how you said Dane, you know, making certain that you are honest about what happened to you, that right there may seem like a small thing. I know for a long time, one reason uh as a young adult that I did not want to get involved in uh you know policy uh issues had a lot to do with the fact that I just felt like I didn't have anything to bring to the conversation because I didn't understand politics, I didn't want to be in politics. And um, and uh oddly enough, I keep getting dragged back into this thing. But but sometimes my story had had so much more value than what I even realized because of the harms that I had experienced firsthand. And I do believe that it's super important for us to encourage our community that if you've had something harmful happen to you where you were uh really uh put at risk, your life was put at risk, or your health was put at risk, or your child's health was put at risk because of a horrible policy at an insurance company or at your employer or at some other thing. It is incumbent upon us that we have to raise our hand and share our story and communicate these things because Congress is actually trying to make decisions for the betterment of people uh that they represent uh every day. But if they don't have this information to go on, uh they they don't really have the ability to to substantiate even some of the changes that they want to substantiate. And there's it's a complex system, there's many, many moving parts, um, but never underestimate the power of of your story. And uh I appreciate the way that you guys have framed that. I want to just before we go today, I want to kind of just highlight, I mean, there there's a we've kind of talked about a broad swath of of things that have just occurred, things that have happened in the past, but um Dane, I'll I'll ask this to you, but what do you feel like are some of the hot things that we need to be at least for as a community to advocate for as we move over 2026?

SPEAKER_01 54:04

Yeah, um the I want to remind folks um that the your voice matters and that we see incremental progress every day. It's not that in that time, you know, since 2004 that I've been doing this, nothing has happened. A lot has happened. Um many diseases um now either have become gone from life-threatening to manageable chronic illness, or you know, have had life extendency, expect expectancy and quality of life extended dramatically. And that's because of innovation and healthcare, both on the treatment side and on the patient care side. Uh policy tends to lag behind, though. You know, the the rules and laws and the governing coverage and access don't move as quickly as innovation moves. So um I think you know, your voice is going to continue to matter. And in that sense, remember, um uh up until 20 you know, 16 um or you know, years ago now, uh 2009, um we didn't have protection for pre-existing conditions. Um, we didn't have dependents can stay on family coverage till 26. We didn't have no lifetime and annual caps on benefits, so there's rarely a complete and total victory, it's usually incremental progress. You know, those issues have been redressed, and now it's on to the next ones. And then if we do address things like AFP, copay accumulators, maximizer programs, there'll be something else that's stopping folks with rare chronic or life-threatening conditions from getting exactly what they need. But the constant in all of that is if you tell your policymakers what you're dealing with, and if you say, I think this is unfair, or I think any reasonable person would say this is unrealistic in what you're asking me to do, they will try to make sure the system works for you. That's how it's designed. So we're still making progress, we're still seeing those efforts, but those efforts are driven forward by people who take have the courage to stand up, speak out, and make their voice heard.

Your Story Is The Strategy

SPEAKER_02 55:54

That's so good. That's so good. And I'll I'll take this as a moment to give a shameless plug because in June uh 10th and 11th, we will be going to DC uh and bringing some of our closest uh patient advocates with us uh to advocate specifically on these issues. Another major moniker for us has been uh patient choice. We believe that it should be if you are insured that you should have the right to choose what medication, what doctor, and what specialty pharmacy that you uh use to be able to get the life-saving medications that you have. And uh, we're really hopeful we continue to see incremental progress on this bill that we've been working on now for a couple of years, uh, related to any willing provider for uh specialty pharmacy choice specifically. But this is something that I think is really critical. We're gonna be advocating more on that. If you've ever had a situation where it really pertained to where you felt like there was harm done to you because of not being able to get your medications in the way that you needed it when you needed it, uh, we would love to hear your story. And so you can email us at info at hope-encharities.org or go to our website to learn more about how to get involved with that. But again, this Hope on the Hill date specifically will be June 10th and 11th. That's not the only issue we'll be talking about. We'll also be talking about eight AFPs, alternative funding programs where your employer plan prohibits you from getting your medication through your normal insurance channels. And um, we'll also be talking about uh the Copay Accumulator Bill. The Help Copay's Act was just uh reintroduced to Congress again, and and we continue to need to put pressure on that. One thing that I've learned uh through you know the last decade or so of doing these things is that there really is, like you said, Dane, incremental progress happening every day. And you know, I think about PBM reform and in as a as an example, you know, that was something that's been investigated over and over and over and over again by all these subcommittees. I'm actually encouraged as we talk to offices, it looks like this thing is going to come to a head. We believe, uh, I believe that there's going to be a large healthcare adoption of policies that will be adopted later on this year. And so it's really, really important. It's a critical year in 2026 for us to get our message out, get our voices heard. And uh, we don't have to wait till June 10th and 11th to do that. We can call our congressmen and senators now to do those things. We'd love to help to facilitate that for folks who are listening. But um, you know, if there's a way that we can work together, I think it's important that we get organized around these issues, we communicate effectively without uh drama, and we just try to make certain that we uh communicate with clarity and honesty, like you said, Dane, and uh and keep our message in front of them because it is important to uh help them uh to be able to make the progress that's needed to be made on all of our behalves. Um, with that, I I just will open the floor to see is there anything else, Jen, that you'd like to add or encourage people with before we go today?

SPEAKER_00 58:53

I just um I I would encourage people to try to get involved with um the hope on the hill for June. It's very important. We need their voices, um, and uh one person can make a big difference. And so don't um don't think that can't happen.

SPEAKER_02 59:11

Yeah, so true.

SPEAKER_01 59:12

Dane, any I'll just echo Jim's comments, but absolutely.

2026 Priorities And Patient Choice

SPEAKER_02 59:17

Yeah. Well, thank you guys both for joining me for the Hope podcast today. I really appreciate this conversation. We're gonna be doing so much more together. It's like the three musketeers right here all day, every day. So uh appreciate all the hard work that both of you guys do, and uh, we'll see you both soon. Take care. Thank you. Well, amazing work, and I really appreciate all of their help, but I mostly appreciate your opportunity for you to listen to this conversation because I really believe moments like this help us to form clarity as we start to collaborate with creativity. There's an opportunity for us to work together, and I really hope that you can get involved. And if you don't know how to do that, you can go to our website at hope-in charities.org. You can learn more there about the Opportunities. As I mentioned, Hope on the Hill. You can learn what we did last year. And there's also a new opportunity for you to get involved for that next year. We're also going to be doing more podcast episodes like this on advocacy and more issues that are important to people like you and me in our community. And I certainly hope that you take advantage of liking and subscribing. It really helps us out, helps get the message out further to your friends and family. And it really makes a big difference in the community. These podcast moments, oddly enough, we've seen an increase in listenership in the Washington, DC area. So just by you listening to this, it helps to improve the algorithm so that make sure we get this in front of the people who do need to hear it, even in DC. So thank you so much for being able to join us for this moment. And once again, I want to say a thank you to our sponsor today for this episode, Janintec, for making this episode great. And uh we really look forward to seeing you in the next time. But for now, thanks so much, and we look forward to seeing you later. Take care.