Policy and Health Unveiled: Navigating the Nexus of Politics, Healthcare and Chronic Illness

IG Living Advocate Podcast Episode 11

Published: Dec. 29, 2023 @ 10AM

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Listen to the episode Policy and Health Unveiled: Navigating the Nexus of Politics, Healthcare and Chronic Illness hosted by patient advocate Abbie Cornett. In this episode, we will discuss the intersection between politics, healthcare and chronic illness.

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Episode 11 Transcript

Policy and Health Unveiled: Navigating the Nexus of Politics, Healthcare and Chronic Illness

Hello and thank you for joining us today. My name is Abbie Cornett, and I am the patient advocate for IG Living magazine. This podcast is brought to you by IG Living magazine to give readers an opportunity to hear from healthcare experts on topics important to them.

In this episode, we will discuss the intersection between politics, healthcare and chronic illness.

Today, we have guest speaker Peggy Tighe. Peggy is a prominent figure in healthcare policy and lobbying. With a juris doctorate degree from Delaware Law and a bachelor of arts from Wittenberg University, Peggy has dedicated her career to understanding the challenges faced by health systems, patient groups and provider organizations. Her extensive experience includes roles at major national healthcare associations such as the American Medical Association and the Health Insurance Association of America. Recognized as a Top Lobbyist by the National Institute for Lobbying & Ethics and The Hill, Peggy's influence extends to her board membership with the Mental Health Liaison Group since 2018 and her founding of the Judy Schneider "Direct Connect to Congress" program in 2004. As the president of Women in Government Relations from 2004 to 2006, Peggy's contributions have left a lasting impact, further evidenced by her role as the founder and chief judge of the Judy Schneider Fellowship since 2015. Through her work with national coalitions, individual clients and teaching engagements at American University, Peggy stands as a respected mentor, advocate and leader in the dynamic field of healthcare policy.

Abbie: It's truly a pleasure to welcome you, Peggy, today. We go way back to our collaboration at the Alliance for Biotherapeutics, and I've been closely following your work over the years. Your wealth of experience and insights make you the ideal guest for today's topic: "Policy and Health Unveiled: Navigating the Nexus of Politics, Healthcare and Chronic Illness." Before we start, why don't you give our listeners a little background on yourself and how you became involved in healthcare policy.

Peggy: I strongly believe that becoming an advocate comes from a place probably starting in your childhood. As the last of five children, I've always had to fight for myself and fight for the things I believed in. So, I've since forgiven and thanked my siblings for making me who I am. But I believe that being a strong advocate has to come from a really strong place of passion and caring about an issue. Of all my career moves and the couple of changes that I went through, I really started with a belief that the law was how I was going to help change things — things that were problematic for people. So, I went to law school and, believe it or not, I walked out of law school saying, "I'm going to be a criminal defense attorney."

And it happened that I walked out of law school when they weren't hiring lawyers across the country for the very first time. So I accidentally fell into healthcare. I got a temporary secretary job working for the Health Insurance Association of America, and I was fortunate that I saw lobbyists in action. As much as I knew academically what a lobbyist was, I never really knew what it was until I met them. I then got exposed to Congress and working in Congress and realized that the advocate who I always was and always wanted to be had a real position, and that real position was being a lobbyist.

I worked very hard to learn how to lobby without having worked on Capitol Hill. So, grassroots advocacy is where I started and that continues throughout my career as the touchstone of everything I do. Influencing policymakers means you have to have the grassroots engaged in anything you're doing. It isn't throwing money at people and getting members of Congress to just answer your every whim because you've thrown money at them. Real people actually matter to policymakers. They are the constituents. They are the people who keep voting them into office. So grassroots is everything in what I do. I am focused on being a lobbyist now, but I do that with a very specific bent on engaging patients and physicians in communicating with their legislators.

Abbie: That is a really interesting perspective, and we're going to get to the grassroots part in a few minutes. Drawing from your extensive experience in the political arena and your representation of various patient groups, could you shed light on the far-reaching consequences of political decisions on the landscape of healthcare policies for our listeners? I know you and I dealt with some of those repercussions in the past, so if you could just tell us some more stories.

Peggy: I would just start by saying healthcare is personal unless you don't have any healthcare issues yourself or any healthcare issues in your family. Then, it wouldn't be personal. Therefore, it is personal to every human being. It's also personal to policymakers; it matters. So, there is going to be, at least, some sort of empathy from them for the issues you're talking about because you're a human being. Because at some point in your life, if not yet, you will be a patient. So what the government can do to you or cannot do to you is incredibly important for your own personal health and your own family's health. It also matters for your taxes. It matters how much you pay to care for other people's health. So it's always going to have a huge impact.

Healthcare is a sixth of the economy, so even if you're the most brazen of politicians without a heart, you would think this is an economic issue and care about it just because it's an economic issue. It matters to everybody coming at it from different angles: How do you get healthcare? How are insurers covering your healthcare? Are you on a government program? Are you receiving the best quality care that you can be receiving? Do you have access to drugs? Do you have access to transplantation? Do you have access to other very important services that you or your family are going to need?

So, the far-reaching consequences of political decisions are really based on laws that impact you, or the lack of laws that could be or should be impacting you or on overregulation. There are some in industry, physicians included, who are saying there are too many regulations. We can't follow everything. We don't have the time to provide quality care when the government's overburdening us. So, there has to be a really important balance struck between regulation and overregulation in healthcare.

Abbie: You brought up a very interesting point on overregulation. It's something that we hear all the time — that it has gotten so regulated that it's almost impossible to treat patients in some areas. Recognizing the pivotal role of patients advocating for their own needs, could you share your perspective on the influence healthcare advocacy groups exert? Can you delve into how personal narratives contribute to shaping policymakers' perspectives and affect change in healthcare policy? I know you touched a little bit in your opening on how personal stories really matter. But if you could explain a little bit more in-depth how that matters when it comes to testifying in front of Congress.

Peggy: Yeah, this matters so much. As recently as a week ago, we had transplant surgeons. So, I happen to represent the American Society of Transplant Surgeons and we had the surgeons come in and talk to members of staff. Congressional staffers are typically 25 to 26 years old, and many of them, the last time they saw a hospital was when they were born, if they're lucky, and they don't have any health issues. When we go in and talk to them, we make sure to say: "Are you familiar with transplantation?" And we just do it gently; we don't demand anything from the staffer, we just ask a pretty open question. Six times when we were on Capitol Hill in one day, a staffer said to us: my uncle, my brother, myself, my member of Congress had a transplant or gave an organ to someone else. That's when we know that office is going to care more than any other office because there's a personal experience with a member or with a patient.

But you have to be really careful about that. I have watched patient groups go in and, for example, talk about their disease group as worse than other diseases. That's a big mistake. You know, Abbie, that's a terrible mistake. You've lost them. Speak about your own consequences. Speak about how government is impacting you. It's important to tell your story, and your story is everything, but you have to deliver it concisely. If you go on for 15 minutes talking about your personal health experience, you haven't made the ask. You haven't said, "And here's how you could help me Congressman, by signing on to this legislation. This is what the legislation does." You have to make the nexus between your personal story and what it is the government can do for you.

So that's what I coach patients. I know your story is something you feel like you can't tell in less than 45 minutes. You've got five minutes, so work on that ahead of time. Think about how you're going to express it. You will have time to give them the rest of your story when you build a relationship. Because, ultimately, you don't just go to Capitol Hill or have a call with Capitol Hill to say it all at once and to get it all done and to give a speech. What you're trying to do is build a relationship with these staffers, with these members of Congress, so they get to know you as a person and your issues. And, they are going to try to be your champion because you've enlisted them to care, because you gave them your personal story. But do that in chunks. Don't dump it all at once.

Abbie: Absolutely. That's something I have reiterated numerous times when I've talked to people about either writing articles or contacting members of Congress. And the other thing you touched on briefly is never say my disease is worse than someone else's disease. Because you don't know who you're talking to. They may have a family member with that other disease, but they can relate to the general hardship of a chronic illness.

You touched on this at the beginning — about how important grassroots is, and all of us recognize or have heard how effective grassroots strategies are. But that's different than understanding how you actually get involved in a grassroot activity. Could you demystify effective grassroots and legislation advocacy strategies, and provide some insights on how individuals can actually get involved in those activities and contribute?

Peggy: What's so exciting to me is that, 30 years ago, when I started doing grassroots, the only thing that grassroots meant was sending a letter to Congress or maybe participating in a protest. You have so many more tools in your arsenal now to be an effective grassroots advocate. It's incredible what you can do with social media.

I represent a group that is fighting a drug discount program, Community Voices for 340B. We have a whole toolkit for people. Do you want to write an op-ed? Do you want to film your story? We'll put it on our website? Here's the way on LinkedIn on Facebook on Twitter that you can communicate. Here's how to throw an event. Here's how to educate your own staff. There are so many things you can do to be a powerful grassroots advocate. The variety is nearly endless. And the ways you can impact policymakers' decision-making is by doing not just one of those things once, but continuing to do those things.

We've also encouraged our advocates to set a time. You have a day job, probably. Set a time on your calendar once a month. You believe in advocacy for whatever it is your cause is. Set a time in your calendar for a half an hour, OK, once a month or once a quarter, and put it in your calendar and put those little tips and tricks in there and say, "What am I going to do today to be supportive of this cause?" Many of us function on a calendar, right? Oh, "What do I have to do, what do I have to do today?" If you put it on your own calendar, you're more likely to do it. And if you can't that day, move it to the next day. That will keep you on track and make sure you are a consistent regular grassroots advocate who then builds relationships with other advocates, with the larger community and, hopefully, with policymakers if you're trying to effectuate a particular type of change through regulation or legislation.

Abbie: That's an excellent suggestion. I'm one of those people who lives by my calendar. I'm always trying to find blocks: "Oh, I need to do this, I need to do that." But if I put it there, I do it, right?

Peggy: Right. We're all creatures of habit that way with our calendars, right?

Abbie: We definitely are. Peggy, in your experience with advocating for chronic illness issues, what are the primary challenges healthcare lobbyists often encounter such as facing opposition from other interest groups? And, I know you and I have been there before, and that's why I said you have to remember my disease isn't more important than your disease. But, you also have opposition groups and you have to balance the diverse stakeholders.

Peggy: Right. But, there's a lot of issues that come up when you're doing patient advocacy with Congress or even with state legislators.

The first one is often money. If you're asking for something that costs something, they have to then take money away from somebody else. There is not an endless supply of money anywhere, and certainly not in this Congress. We've stalled. We've almost shut down the government. We're going to look at it again in January to figure out if we have to shut down the government because there isn't a lot of money. So, if you walk in saying I want $5 billion for fill-in-the-blank disease research, you have to come from a place of being realistic and understanding the political landscape.

Also, the way Congress functions with funding for diseases is they turn it all over to the National Institutes of Health. They don't want to make the decisions between the diseases. So you won't see as much disease-specific legislation in Congress because they don't like choosing between different diseases for the reasons we just expressed. So where is the National Institutes of Health funding going to be, and how can you be supportive of the various institutes that support your disease state if that's what you're fighting for is a whole different kind of lobbying. And working with the National Institutes of Health is different. So make sure you're giving your member of Congress a plausible way to help you. You're asking for too much money, you're asking them for something they don't do? You don't want to go to that meeting and hear, "We don't do disease-specific legislation. Thank you, goodbye." That's a waste of time.

Abbie: One of the things that I found when I was a state legislator and then when I was working on Capitol Hill is if you are making an ask for something, show what the benefit will be. If I get this medication on time, this is the cost savings. And I found that you need to have that balance also when you're making an ask, you know. Find some way to show how it'll be beneficial in the long run.

Peggy: So glad you brought that up. So what is the hospitalization rate without this kind of care? How much does it cost to take care of something? Prevention is incredibly important. It might not get scored in the easiest way by the Congressional budget office, but there are ways to make sure you're showing a real impact, not just and this is not a small just, but it is important that people are healthier, but it's also important from a policymaker's perspective that there's a greater good coming to the whole society, not just to those people who are being treated for a particular disease.

An example of that is Ryan White clinics. I also represent Ryan White clinics, and those are the HIV/AIDS clinics that are supported by funding through the federal government and also through this drug pricing program called 340B. Ryan White clinics go and talk to their legislators and say, "You need to fund us because we can eradicate HIV." That's amazing, right, and that's a huge cost savings because it's a giant burden on the system. If you could cure a disease, and both the last two presidents — the current president and the last president — made it a priority to eliminate HIV.

So when you're talking to policymakers, you might think HIV/AIDS is a squishy liberal issue. It's not. It's a money issue. It's a big issue. It's a public health issue. Do not assume that because your member of Congress is a Democrat or a Republican that they're going to have certain views. Learn about them. Go and find out who they are. Don't just put a label on their heads because they're not all the same.

Abbie: You're absolutely right. And, you know, one of my biggest arguments was if people get their medication, you keep them out of the ER and out of the hospital, which is way more expensive than the medication, generally speaking.

Peggy: You know this. As a former legislator, you couldn't put Abbie in a box, you know. There were positions and views she had that probably shocked people. Do not assume, because you know what happens when you assume.

Abbie: Yes I do. That brings us to my question, and after that, if you have any other comments, I'd love to hear them or anything you'd like to touch base with. But I'd like to address a common misperception people have. Lobbyists often really get a bad rap in the media, in movies and on radio talk shows. But, I have found most of the lobbyists I've worked with have been incredibly upfront people. And you, particularly, are absolutely the most ethical person I've ever worked with. Can you share with our audience how you navigate and uphold that level of ethical standard in your advocacy work? And, specifically, how do you ensure transparency and steer clear of the conflicts of interests, and prioritize interests of the individual with the chronic illness? That's a multifaceted question.

Peggy: Even if I wasn't a decent human being, it is harmful for you to go to Capitol Hill and lie. I don't know why I have to tell people that. But to go and lie or make up things or not do your homework or go and yell at people, that is not what lobbyists do. Lobbyists who do that are dumb lobbyists, right? Because the 27-year-old Hill staffers are going to talk about you. It's like a big college campus, and they're going to go tell somebody: "Don't trust her; don't talk to her; she lies."

So even if you're not a decent person, it is in your own self-interest and it probably makes the most sense to be an ethical lobbyist because relationships are your whole game. You want people to know that you're a trustworthy resource, that you're going to bring them information that they need. You're going to do it in a timely fashion, and you're not going to go, "Oh it's two weeks later, somebody asked me a question, I'll finally get back to them." The Hill moves so quickly. If you cannot get information to people very quickly, you're of no use to them, no use to them. And accurate information. Sometimes that's 20 minutes, so you better, number one, know your stuff. You better know where to get the answers. And, if you have to caveat it with, "I know this, but I don't know this, and I'm going to go find out that for you." And go do the homework and research.

So, good lobbyists have to have a higher degree of ethics in my mind. And I know that I'm a lobbyist speaking, but these people rely on you, and you are going to have a good business and a good ability to work with Capitol Hill if you're that kind of person. If you're not, you're going to have trouble getting access, and all the money in the world can't get you good access to a Hill staffer who hates you and doesn't trust you.

Abbie: Absolutely. One of my other favorite lobbyists who I worked with, he would come in and we'd sit down and we're drinking coffee, and he'd be like, "OK, this is why boom, boom, boom; he'd give me all the facts." I'm like, "So, OK, now tell me the other side."

Peggy: And I'm so glad you brought that up. What's most important is that you are not giving a speech. You are talking about the whole issue. And this is who's going to be on the other side, and this is why they're on the other side. And I think their arguments aren't as good as our arguments because our arguments are the following. Do not hide the ball. Don't pretend that there's not opposition. That member will not trust you if you hide the ball, you know.

Abbie: Or you make the opposition sound like they're all bad.

Peggy: Yep, sins of omission. There's the other failing is they're just evil and they don't know what they're talking about. No. State their arguments, and say, "I can see where they would think that; however." This is a better argument. You can manage your opposition very effectively. In a coalition I'm running on regulatory relief, we're trying to help reduce the pain of prior authorization, which should have a great impact on patients, by the way. Regulatory Relief Coalition, if you want to look into it, is we went to our opposition and said, "Hey, we see that you wrote this stuff saying you're going to do less prior authorization. We're going to hold you to that. We're going to write a bill based on what you wrote." And we ended up at the end of the day having insurers agree and support and endorse our bill because we put them in a little box, and we used their words against them. And you can do that effectively, but it takes some skill. It takes some strategy to do that. Do not ignore or do not just beat up your opposition because you do that at your peril.

Abbie: The other thing when you say that brings to mind that lobbying is an act of compromise, too. You have to know when to give on an issue. And when you said you have to know your issue, you have to know your issue inside and out to know what you have to have and what you can let go. And you have to be willing to give the opposition something else.

Peggy: Right. And I would add to that "when" to compromise. Abbie's so right and knowledgeable, and she has the experience and knows how to do this and has done it. The "when" is incredibly important. If you negotiate with yourself too early, you have completely weakened your position. So you have to know about it, have enough experience, talk to enough people, make sure you're befriending those Hill staffers and have the strategic conversations on a regular basis. It's not all or nothing. It isn't: My bill has to pass tomorrow. You might have to change it, to stick it in a different bill to get it to actually move. You might have to wait for a rule to come out of the agency. And then you have to look at your bill and say what does the rule do and what does my bill do and what can I get rid of because it's already done?

Abbie: I was going to say, how many times have you passed a bill and then when the rule comes out, it isn't germane to what you passed.

Peggy: You pivot. The ability to pivot to get to your ultimate strategic objective. Your ultimate strategic objective is probably never the actual words in the bill. Your strategic objective should be getting patients better access to care, for example. So you can get hung up on: "But it's my bill, and I have pride of authorship, and I don't want to change a word in the bill." Would you rather have no bill and a really good shouting point, or would you have half a loaf now and get the rest later. Those are the strategic kind of things that you have to think about in lobbying and as patient advocates working with lobbyists.

Abbie: Peggy, we're down to our last 10 minutes in the podcast. So to wrap up, do you have any final thoughts that you would like to say before we close?

Peggy: I think patient advocacy grassroots is a passion and should be a passion. It is an incredibly important part of how our government works and when our government works well. I was just at an event yesterday where we were talking with a member of Congress who said, "I cannot express more clearly and more strongly to you how important the patient voice will be in getting that member of Congress to be on our side." They tell us that all the time. We know it. We see it in action. You are important in this debate. You are integral to this debate. Do not let anybody tell you anything different. Don't think that the whole system is rigged or they're all terrible people in Congress. There are very good people in Congress and in the legislatures. You just get to need to get to know them and learn how to help them help you.

Abbie: Such an important message. Peggy, I can't tell you what a pleasure it's been having you today, and I look forward to working with you again soon, friend.

Peggy: I love it. When can I interview next?

Abbie: You know what, probably fairly soon. We can do this again. We'll look at some of the issues coming up.

Peggy: I love it, because you know you've got in this podcaster right here somebody with a wealth of experience. And I could have turned this interview right around on her and ask her all the same questions, and she would have had similar answers I think, but even more expertise added.

Abbie: I was going to say, "But I think outside the box. You never know what I'm going to say."

Peggy: Well, that's the other reason nobody should ever tape you.

Abbie: Listeners, thank you again for joining us today. Additional information regarding this podcast can be found on our website at www.igliving.com. If you have a question that was not answered, please contact me at acornett@igliving.com.

Look for the next IG Living Advocate podcast announcement on our website for the opportunity to submit your questions.

IG Living Advocate is a copyright production of IG Living magazine published by FFF Enterprises. It is the only magazine for the immune globulin community comprised of patients who suffer from chronic illness and their caregivers.