How do we create systematic change so all people have access to quality, equitable health care? This week’s interviewees are focused on engaging consumers through journalism, storytelling, community building, and commitment to long-term solutions. Interested? Catch up with board members Jean Scandlyn and Michael Booth here and then head over to our Colorado Gives Day profile to schedule a donation to ensure we can continue to do the work to ensure all Coloradans can live healthy lives.
What is your role at CCHI and why do you choose to work with us?
Jean: I’ve been serving on the board of directors for 6 years. During that time I’ve been on the governance committee and also have served as the chair of the board of directors. I have a couple of motivations. I teach in the undergraduate public health program at the University of Colorado Denver downtown, I was a public health nurse for many years, and I feel very strongly that access to health care is a critical resource for people. I think of healthcare as a right and not a privilege, and we have a system based in private enterprise, so consumers need to have a voice in that process. It’s a real challenge to do policy around consumer advocacy because I don’t think people often see themselves as a unified block of consumers in terms of healthcare. So that makes it really tough. It really is a challenge, to do that kind of advocacy. So I see my role as twofold: first is getting the word out to the public, to my network of friends and to my colleagues. To make it known that there is an organization out there that’s working on these issues and share how they can get involved. Second is bringing that perspective to my students.
What is your role on the board?
Jean: I would say my role is as an ambassador, to get the word out in the community and share with people. I’m not an expert particularly in policy work. I’ve learned a lot working with CCHI and I really value that. I love writing letters to senators and calling them on the phone. I’m happy to do all those things.
What does that look like?
Jean: More recently it’s been great to be able to promote the Consumer Assistance Program. I can think of one time when I had a friend who’s husband was quite ill, and they had no insurance. He needed care right away, he needed to get in. I was able to connect him with CCHI and they got him the health care that he needed and it was really wonderful. That was shared among a circle of friends, and then that word gets out, and that was before the Consumer Assistance Program. Now we have a formal program I can refer people to. Anytime that I’m in a meeting or with another community organization, or sharing with students who are working in the community, the word gets out.
So what do you think the role of communities and networks is in advocacy work?
Jean: I think it’s making people more aware of how important policy is to everyday life, that in many ways what we do at the policy level has more impact on health than what we do at the doctor’s office. Certainly those individual relationships with providers are really critical to our own individual health, but when we think about all of our health, it’s really policy that makes the biggest difference: policy around health care access but also policy around what we call the social determinants of health, things like employment and income, and making sure people have the resources they need to be healthy. I think if people could be more aware of how important policy is, that would help.
What are some experiences in your years at CCHI that stick out to you?
Jean: The Health Care Day of Action. It’s really amazing to go to the capitol with people who are there all the time and know how the system works and see what the process is so that as a citizen you can learn how to have input. I think a lot of us kind of know in the abstract that we can have an impact but we don’t really know how do it. That is amazing to me.
Would you identify as an advocate?
Jean: You know it’s funny, I don’t really think of myself as an advocate. But I will take action when I feel like there’s action I can take that’s useful and helpful, whether it’s writing a letter or serving on a board. I feel I can be more effective on that level.
How does your research or your work with CCHI or the confluence of the two impact your personal or professional hopes and goals for the future?
Jean: Another reason I got involved with CCHI was that I’ve been very involved my whole career in Denver in community-based organizations. I feel it’s really important for at least some folks at the university be reaching out into the community, and it’s a value the university espouses as well. That’s really important to me, to be involved with the community. So this is one way that I do that and make connections. Of course I also work closely with people in the school of public health, and there’s a whole area of public health that has to do with health policy, so making those connections with CCHI is important. Folks from CCHI come to our introduction to public health course, to talk about what it would look like to have a career in public health that works in health policy, because many of our students are not really aware of that. That’s another piece that’s really exciting, to see students get really excited about health policy. Sometimes that’s because they’ve either been to the Health Care Day of Action, or heard from folks at CCHI.
What is medical sociology?
Jean: It’s basically the idea of looking at health systems as embedded in a local or regional context. In other words, medical systems arise from particular histories, and political and economic conditions. It’s looking at the intersection of all of those things and how they affect health care, how people think about health, and where they go for healing.
So how does that work make you think about the issues you see now?
Jean: I think about how much our medical system in the United States, anywhere, but I’m really thinking about the US, is really embedded in our whole political and economic system. It came out of our history. For example, the fact that many Americans don’t see health care as a human right, but really see it as a privilege, something that you purchase or something that you earn, makes our system very different. We have amazing innovations in terms of all kinds of technical aspects of health care, we’re really good at that. But we’re not as good at dealing with healthy people and keeping them healthy, like with primary care. If you look at our infant mortality rates for example, we’re excellent at saving very prematurely born infants. We do that better than almost any other place in the world! But if we look across wealthy nations, we’re near the bottom for keeping healthy babies healthy. So we have a relatively high infant mortality rate for babies born at term who should survive. To me it’s history. It’s politics. It’s economics. It’s culture. It’s all those things wrapped together.
How does that inform your goals for working with CCHI?
Jean: It makes me ask how do we work within that package to create policies that will enable more people to have access to high quality care. How do we do that?
If you could pinpoint your values, do you have any formative background?
Jean: I believe that everyone should have the basic things they need to live a healthy life. That’s where I’m coming from. All human beings are valuable and we should ensure as a society that people have the basic things. It doesn’t have to be the luxuries, but the things they need. The good food. The healthy atmosphere. The things to be healthy. That’s really something everyone should have.
Is there something from growing up that helped craft those values?
Jean: I’m an old hippie. I grew up in the sixties where there was a lot of talk about that, and that was probably very influential. Also seeing disparities within my extended family. How some people could be healthier than others because of what they had access to. That seemed unfair to me.
Is there anything outside of health care that you are passionate about?
Jean: The environment and stewardship of the earth. It’s time to step back and say, “we live on one planet. We can get anywhere in 72 hours on the earth. We’re all connected in lots of ways, so how are we going to develop the mechanisms to respond at that level to the changing climate?” I have no answers. I think that’s for the next generation to figure out.
How do those issues intersect with health care?
Jean: Health is a nice way to begin looking at those issues because we all have bodies. We are all centered in our bodies. Health is something that affects all of us every single day. It’s something that we can all connect to. If we can then begin to connect that to these larger systems, and say, “Yes, my individual behavior, if I brush my teeth or if I eat well or if I exercise is going to affect my individual health but all of those things are also affected by all of these other systems”, then maybe we can work towards some of that larger-scale thinking. It’s pretty idealistic. We can start with us and move outwards. People need a personal connection. Human beings are not inherently, completely selfish beings. We have to have some connection. There also needs something in it for us, and that’s fine. With healthcare it’s working within the private enterprise system to find the economic incentives to do things that then become more fair and equitable for everyone. And that’s a challenge. It takes working across many disciplines and lots of perspectives to be able to get there. So we have to be able to talk to people who work in insurance, and people who do the billing, and people who provide the funds, and stockholders, and all those people to be able to figure that out. We need to ask what the ways are to bring the financial interests together with the social interests. It will probably never meet exactly, but they can get closer. Over the years, when I think about how my views have changed from when I was younger, I see that a lot of really instrumental change happens with actions that people are taking that are not even always deliberately directed in a certain way. It’s like the industrial revolution. They came with all of these different things happening towards something. But it wasn’t necessarily directed specifically. So I think we just move in the direction that we want to see, and hopefully at some point there will be a tide that builds.
What is your role on the board?
Michael: I’ve been on the CCHI board for just about a year now, and previous to that, worked with CCHI as a journalist, using them as a source of information, a source of policy advocacy, for their advocacy of expanded health insurance and health access for everyone. I have covered healthcare as a journalist for a lot of my career, and I had always appreciated how CCHI was advocating for a group that doesn’t have a voice, most of the time, in these debates. In health care as you know, there are huge institutions that people have to deal with. Hospitals, the faceless insurance companies, big government institutions that are often very well intentioned but are enormous and have layers of rules built up over dozens of years that people must navigate. And there is very little voice for consumers as a group, and for the user as a group. Even engaged consumers don’t know necessarily where to go to get help, and the disengaged consumer, who needs help more than anyone, really doesn’t have anyone fighting for them, unless it’s CCHI and a couple of like-minded organizations. So when I decided to join advocacy in addition to my journalism work, and CCHI was interested in having me, it was a great choice for me and I hope it’s working out for them.
What is the role of journalism in health care?
Michael: Journalism is so important in health care, because it’s such a complicated field and because of these powerful institutional forces. Journalism is meant to supply the facts to the public and to policymakers especially, in a way that allows them to make better decisions for a larger group of people. In health care, that’s perhaps more important than in any other field, because the policymakers often don’t understand it, or don’t understand all of it. They need to hear the voices that are being ground in the gears of the system, and journalism can play that role. You need to inform the public about decisions that are made on their behalf that may be good or bad for them, and you need to go tell the policy makers: “Did you realize that when you did that or you neglected to do that, 500,000 people were impacted, and here’s how they were impacted?”
Why health?
Michael: To me, health care, as a journalist, is an enormously open field for everything from the most personal stories about how people’s medical conditions or mental health conditions have affected themselves of their families, to the largest policy decision that literally affects 5 million people at a time in one state, and then everything in between. You can follow the money, you can follow the policy, you can follow the individual story. What always attracted me to journalism was the challenge of taking very complex information and making it both useful to people, and also entertaining to people. Because you have to capture their attention and get them to finish it, if you’re going to get them to use the new knowledge.
What’s a story that you’re proud of in that way?
Michael: Related to CCHI, one of the packages that I was most happy with was when the Denver Post asked me to put together the explainer of what the Affordable Care Act was, when it was going into effect, and what the different pieces of it meant for different groups of people. Talking about both the positive impacts, as well as for some people who were worried about the negative impacts, like small businesses that didn’t know how it was going to affect their taxes and their employees. And so I wrote an entire special section that was a consumer guide to the Affordable Care Act, and it was, to me, the best challenge in journalism. Trying to take that policy and show people how it was going to affect their lives.
Do you identify as an advocate?
Michael: I think my work as a board member is to support the advocacy work, and to try to help make it sustainable. As a journalist, I need to be cognizant of some of the journalism standards in terms of not necessarily going too far into advocacy and making sure that we stick to the facts, and stick to presenting facts to policy makers that are useful to them. So if people think of advocacy only as marching in the streets or doing a sit-in protest, then that’s not the role I see for myself. I do see myself as an advocate for CCHI across Colorado. I think the board members should be both internally supportive of the work, and external ambassadors, for believing in what CCHI does. So another term I’m comfortable with in addition to advocacy is being an ambassador, for the great things that CCHI does.
Is there someone in your life who you saw playing that role that helped to craft the way you engage?
Michael: I think in journalism, it’s difficult. Because in journalism, a lot of journalists are still very adamant that you can’t get connected to anything that is advocating for a position. Even if it’s non-partisan, as CCHI is. So I’m still working that out, in terms of: “what is my role model for that?” In terms of the advocacy side of the work, people whose approach I have admired who do this work who are conscious, full-time advocates, two of them are the past and current directors of CCHI. I like to hear from people who keep in mind that large groups of citizens need an extra voice, and are trying to help deliver to them what they need to live healthier lives.
Have you had any success in uniting consumers as a group in that way?
Michael: I think that CCHI and other groups still have some work to do in terms of thinking about that, and making themselves effective to a larger group of people. I think outsiders might assume that CCHI is mainly working for a Medicaid expansion client, a working mom who has a couple of kids and a couple of jobs and still doesn’t make quite enough for their own health insurance, and really needs Medicaid expansion to live a healthy life for their family. And that’s certainly what we do. But we are also advocating, more than ever, for the small business owner, who’s an independent contractor, who doesn’t make $300,000 a year and needs to find health insurance and is stuck in the age somewhere between having an employer take care of everything and having Medicare take care of everything. And they’ve got a 15-year window where they still need health care and their kids probably need health care more than ever. So we need to make sure that we let that group know that we are fighting for them too. We are definitely fighting for them, and letting that group know that they should support CCHI is the key, because we need them for being effective policy makers, for advocates. And sometime we need them for donations. We need them for Colorado Gives Day!
What would you say to those who don’t identify as being necessarily a consumer or part of the consumer advocacy world? What brings consumers together?
Michael: In health care, what brings consumers together whether they all know it or not, consciously, is that they are involved in a huge system of health care. And that even if they don’t have insurance issues right now, the next time that they go to the ER, or the next time they pay cash at a retail clinic for their flu shot, because that’s the way they’re accessing health care, there are much larger forces at work that can either make their lives easier or make their lives harder. They should know that there are people fighting for their point of view.
Are there some key values in journalism and in your life that help inform your involvement in this struggle?
Michael: The same thing that has always attracted me to journalism is definitely what informs a lot of my work with and my support of CCHI: A strong belief that accurate information presented in the most approachable way helps people make better decisions, and helps policymakers make better decisions for large groups of people. It’s naive sometimes, but we have to continue to believe that accuracy and true stories about people’s lives can impact the way that policy makers think and rule and vote. CCHI relies on that, and journalism relies on that.
Is there a particular consumer story that has stayed with you?
Michael: One of the biggest projects that I ever worked on for the Denver Post was before the opioid crisis became a big national story, a photographer and I started following some young heroin addicts who were living on the streets of Denver and had started their addiction because of addictions to opioid painkillers. We did a long, 3 part series following their lives and talking about their lack of access to things they needed and the difficulties in accessing long term treatment for heroin and opioid addiction. We followed a young woman who was living here and then went back to her family in Wisconsin to try to get clean, and she could not use Medicaid for a certain period of time in Wisconsin to get suboxone, which was an opioid or heroin replacement. It’s similar to methadone but more easily prescribed and much more useful in some ways; so while she was waiting, she didn’t have anything to live on, and ended up going back into burglary with some people that she had fallen back with there. She ended up in prison, and it was a reminder that as well-intentioned as the system is, it still fails people in a lot of ways. It’s not good for anybody to have her in jail when she was willing to get treatment.
How does hearing those stories and being an ambassador make you think about issues outside of health care? Does it make you look towards the world in a particular way?
Michael: What I’ve learned about these big forces at work in health care — that are sometimes in opposition to each other and opposite to consumers’ best interests — does inform other policy issues that I look at. Realizing that a bunch of different institutions are working individually towards what they think is good for them and good for their shareholders, good for their employees and good for consumers; not realizing they are these big gears that grind a lot of consumers in the middle of those gears. Not realizing that what they do over here is going to end up changing a gear over here. And so certainly it makes you question more and question each policy that comes along and say “is that really going to affect everybody the way you think it’s going to?”
Do you think that helps craft your goals or hopes for the future?
Michael: All the work and all the learning keeps pointing me in the same direction, which is to help try to move policymakers towards an understanding that access to medical and mental health care is foundational to a happy and productive life for all Americans, and yes we can negotiate and compromise about how we broaden that access, but we have to keep broadening that access.
How do we get away from having money at the center?
Michael: I don’t think there’s a way. I think what you have to do is teach people that there are short term and long term consequences for the money side of it. Teach people that there are other forms of government and other societies that manage to broaden access without ruining their budgets. So what is it that we need to learn from them? To remind people that when it comes to budget conversations, nationally, for example, we seem to be willing to borrow infinite amounts of money for the defense budget and for starting wars, and not as willing to borrow money or create room in the budget for providing basic health care for people. I think that’s what we need to keep reminding people.
Is there a certain project or experience that you’ve had where a measured approach to advocacy has been beneficial?
Michael: The Affordable Care Act. From a political perspective, the way the ACA was passed was very painful. It required a lot of maneuvering, a lot of compromise, a lot of negotiating, and required some arm-twisting on votes. Purists didn’t like that at all. Yet, as a result now, it’s been 8-9 years of pieces of the ACA being in place, and as the advocates have hoped, people have come to rely on a lot of those elements. And come to realize that Americans don’t have great access to health care in a lot of places, and the ACA is at least providing a base. And so if you look back at that and think, if at the time you were disillusioned, if you had come out of college in 2009 and been kind of disgusted at all the compromising that was going on, all of the negotiating going on, and it wasn’t Medicare for all, and it wasn’t single-payer, it wasn’t the British National Health System, it’s a good reminder to look back 8-9 years and say, “In Colorado alone, there are 4 or 500,000 more people covered by Medicaid as a result of that.” Think of what that has meant for their everyday lives and their kids’ everyday lives, whether they’re getting a cavity taken care of or whether they’re getting a flu shot getting taken care of, and so therefore the parents can actually go to work and not have to stay home that day or that week and lose their job because they don’t get sick days. Multiply that by hundreds of thousands of times. Multiply that by the very first thing that came into effect with the ACA: covering people up to age 26 on their parents’ health care plan. Which now, my daughters’ generation assumes that has always been the case. But it wasn’t, and people love it. It was a big deal, and it was smart to roll that one out first. So it’s important to keep the idealism because that’s what drives you forward. Keep big goals, but realize that there’s a lot of work to be done every day on the smaller goals that build up to that.
You made it to the end! Thanks for reading. Now check out our Colorado Gives Day profile here to schedule a donation to CCHI!