Access to quality health care can make the difference between good outcomes and bad outcomes for people living with diabetes. Learn how the system could be doing better.
Featuring Victor Montori, M.D.; Jasmine Gonzalvo, PharmD; Patrice Graham-Adams; Lisa Staten, PhD; and Ron Rice.
Transcript:
Phil Lofton:
Welcome back everyone. This season, we’re looking at diabetes and the complications it can introduce into lives. This episode, we’ll be talking about access to diabetes care and how limited access or access with unnecessary complications can impact people living with this disease. Welcome to The Problem. I’m your host, Phil Lofton. The healthcare system is at the best of times, challenging to navigate, but here in America, that system can shut out those who need care the most. Dr. Victor Montori is an endocrinologist and educator at the Mayo Clinic, and he’s also an advocate for more compassionate care in our health system. Here’s a story about a patient named John, a man living with diabetes and how the American health system was limited in providing him care that met him in his need.
Victor Montori:
John Is a middle-aged man who has multiple chronic conditions. He struggles to achieve control of those conditions. He used to work in a company that had multiple accountants and eventually those other accountants were fired, and so there was downsizing and he ended up being the only one left with the work that was previously done by three people. And he would go to medical care and he would be told that he needed to work harder at his diet and he had to exercise more, but he had pain in his feet because of diabetes and nerve damage, he had a low back pain. And so he felt limited in his ability to exercise. Nonetheless, he will still be getting the standard recommendation to exercise every time. He will be told to eat, to avoid the fats and other people will say, no, no, avoid the carbs. And because of his other co-morbidities people told them to eat less salt. And he was just left with choosing among the different flavors of cardboard for his diet.
And he was told repeatedly that he should do a better job of taking his medicines regularly, but anybody paying attention would have known that he was taking them regularly because he was having side effects from the medicines that he was taking. He was given a lot of anti-hypertensive medicines and he was getting dizzy every time he would stand up quickly, for example. So with that, he was sent to a specialist for additional review. He got the same advice again. And one day he comes back home and frustrated, stressed. His daughter had just come back to live with them, with the parents again, after the husband who was abusive of her, just went too far and she just took her kids and run away and came to parent’s house. So John’s daughter and grandkids were with them.
He was worried about them, worried about the grandkids, worried about his job, keeping his job, and looking at the numbers and they’re not adding up, so he’s worried about his employment. And amongst all these worries, he opens up the mail and there’s a letter from his primary care doctor indicating that because he’s not met all the targets of disease control, he should look for another primary care clinician. So it’s this constant blaming of the patient for not… for failing the treatment rather than continuing to find ways with the patient to make the treatment make sense amongst what is a very confusing and complex personal situation, like the situation of John. And in the book, I talk about how healthcare notices to smoke, but blames the… instead of blaming the fire for the smoke, he blames the smoke for the fire.
Phil Lofton:
For Dr. Montori this isn’t just a failure of the medical system, it’s a missed opportunity to do better. According to Dr. Montori, patients like John are a good indicator of how well we’re doing as a health system. If they’re thriving with their chronic conditions, the system is working well, but when they’re experiencing bad outcomes, it can be a sign of how the system on the whole needs to be changed. But often the health system just blames these patients.
Victor Montori:
It’s like having a Canary in the coal mine. And I often… I used to use that image a lot, of the Canary in the coal mine, how the coal miners will bring the Canary into the coal mine, and if the coal mine will become toxic, the air will become toxic, because of the small little lungs of the Canary, the Canary will become sick before anybody else. And so it will be an indicator that the mine was not safe and everybody had to leave. And so the way it was indicated, by the way, it was not like the Canary died because then they will have to get another Canary. And so that will be problematic, right? And very sad. So, what happened is the Canary would stopped singing.
Phil Lofton:
Dr. Montori sees a way for the system to do better. It’s a philosophy of care that he calls minimally disruptive medicine. And for patients with chronic diseases like diabetes, it’s a change that he says we need to make.
Victor Montori:
It starts by recognizing that people, when they become sick, when they become patients, do not all of a sudden, particularly when they become chronic patients, do not live to be great patients. I have this sort of funny thing I say in my talks when I present this concept, which is that when I asked my boys what they want to do when they grow up, they have never, ever, ever said they want to grow up to be great patients. So being a patient is not something that we value and we tried to work towards, it’s something we perhaps we just endure. And we like to use our time, energy and attention to the things we love and to the things in our lives that we enjoy doing, or to fulfill the obligations we have to our family and our community.
When healthcare makes demands on that precious time, energy and attention on our capacity, our very limited capacity, it’d better be the right set of demands, demands on our capacity to implement treatments and self-management that will advance our goals for life and for care. And the issue then requires that clinicians and patients develop an understanding of what’s going on in the patient’s life, develop an understanding of the capacity that’s available to implement the treatment programs, and then create a treatment program that fits, a program that advances those goals in that way, but doesn’t overwhelm the limited capacity that patients and their families have to implement that program.
And so minimally disruptive medicine is that, it’s care that he’s aware of the burden of treatment and seeks to minimize it by respecting kindly the patient’s limited capacity, making sure that it’s available to pursue patients obligations, and that the treatment program is the one with the smallest possible footprint of people’s lives. So, that’s what minimally disruptive medicine pursues.
Phil Lofton:
Jasmine Gonzalvo leads the Center for Health Equity and Innovation, an organization dedicated to reducing health inequality. She’s also a pharmacist. And in her work, she’s also had her fair share of stories of patients who have faced difficulty with the health system.
Jasmine Gonzalvo:
One story that really just has stuck with me and resonates with me, it just happened probably within the last year. I was working with a woman for over a year. When she was first referred to me, her diabetes and her sugars, they were really, really high. She was really frustrated because she just, her sugars had stayed high for a really long time. And when we started working together, I really wanted to understand what her struggle was, what her frustrations were, why she didn’t feel committed to taking the insulin that she had previously been prescribed. We worked through it and really it came out that she was just frustrated, she was scared, she didn’t want to take the insulin, she didn’t like the idea of needles, but we worked kind of in baby steps. She started with one injection a day and kind of got used to that and became accustomed to it. And she saw an improvement in her sugars subsequent to using her insulin on a regular consistent basis.
When she started using her insulin on a consistent regular basis, she started feeling better, started feeling physically better. She really wasn’t aware that she felt so bad when her sugars were high. She was tired all the time. She frequently urinated because her sugars were so high. She was having vision problems, blurry vision because her sugars were so high. When her sugars improved, she noticed a physical improvement in her wellbeing. And that really solidified her commitment to taking her insulin on a consistent basis. And so over six months, eight months, she was just so happy with her progress. And she felt good, she was proud of herself. Her A1C, which tells us what her sugars have been for the last three months, had improved considerably. And she was feeling good.
What happened next is exactly what I’m talking about with these barriers, and which just are just so unfortunate and heartbreaking in some instances. She ended up switching jobs. She liked her new job, it was great, but her new insurance didn’t cover her insulin, her insulin price. The next time she went to fill her insulin, it was $900 for a one month supply of the insulin because of her insurance plan change when she switched jobs. We hooked her up with a financial counselor, and really her options at the end of the day were to quit her job so she could qualify for a Medicaid plan that would help make her insulin affordable, or stay at her job and not be able to afford her insulin.
Those are awful, awful options. And she called me and she was crying. And she said, “I really like this job. I don’t want to quit my job, but I can’t afford my insulin. I finally got to a place where my diabetes was good and I was happy,” and now she’s just devastated. And she was so frustrated because she didn’t know what to do.
And thankfully we worked together and I’m aware of a number of different manufacturer discount programs, which were new at the time. And we hooked her up with those. And through jumping through those hoops, she was able to get her insulin at an affordable price. But I will forever remember the conversation where she was in tears because she was based with the option of quitting her job to be able to afford insulin or keep her job and not be able to afford insulin. And I can’t imagine being in that place of having to choose between my income generation, being able to pay for everything else that I need to survive, but also having my healthcare rely on that fact as well. I just, I will never forget as long as I live, I will never forget that conversation.
And that is just one story that comes to mind when we think about some of these social determinants of health and health inequity, and what people face every day, right here in Indianapolis, these choices of that are so difficult to survive and be healthy and be happy. And there are so many obstacles in the way of achieving health and happiness together.
Phil Lofton:
Outside of the financial barriers within the healthcare system, there are also community barriers to health for people living with diabetes. But here in Indianapolis groups are working alongside neighborhood coalitions to improve the situation and help prevent diabetes. Here’s Patrice Graham-Adams, and Dr. Lisa Staten of the IUPUI Fairbanks School of Public Health.
Patrice Graham-Adams:
The Diabetes Impact Project – Indianapolis Neighborhoods, also known as DIP-IN as a community based research project that is implemented in three Indianapolis neighborhoods. Those neighborhoods are the Near Northwest, the Near West and the Northeast. And this project has three primary goals that we are focused on, diabetes management, diabetes awareness, and diabetes prevention. And so we have many components of the projects that address those three goals. The unique aspect of this project is the fact that it is led by a steering committee made up of neighborhood residents in those three communities. And they are really the backbone of the project and are the driving force in the diabetes awareness aspect of the project.
We also have community health workers that are located not only in a clinical setting which is through Eskenazi Health, but also neighborhood-based community health workers that are located in neighborhood organizations or non-traditional sort of health organizations. And they are able to address not only some of the health aspects of diabetes, but also those factors that are deterrents of people focusing on their health, which we also like to call the social determinants of health. And so this project is funded through the Lilly Global Health Partnership and is the first of its kind in the United States. And so it’s in the U.S. And so it’s really exciting that it’s right here in our city of Indianapolis.
Lisa Staten:
Sure. The Diabetes Impact Project – Indianapolis Neighborhoods, which I’ll now call DIP-IN from now on, the ultimate goal of the project is really to reduce the burden of diabetes in three neighborhood areas of Indianapolis. And the exciting piece of this is that we are able to do this on a pretty good size scale, meaning that we have lots of multi-sector partnerships, lots of different organizations involved in the project, everything from Eskenazi Health, the Local Initiative Support Corporation, or LISC, as well as a lot of more neighborhood-based organizations like Planar House and several community development corporations, United Northeast Community Development Corporation, as well as West Side Community Development Corporation.
Lisa Staten:
This project is funded by the Lilly Corporation and is a great opportunity to bring together all of these partners to work with neighborhoods, and I want to emphasize that we work with the neighborhoods, we don’t just descend upon the neighborhood neighborhoods, to really try to take a big picture approach to reducing the burden of diabetes. And that includes everything from working with people who live in our three DIP-IN neighborhood areas who already have diabetes, and figuring out how do we reduce the barriers to having the best possible control of their diabetes and reduce the long-term complications. And a lot of times that is not about just because somebody doesn’t have right the right medication, but also there are lots of other challenges that they’re dealing with in life at that take priority over actually even thinking about their own personal health. And that’s where our community health workers, who are employees of Eskenazi Health, come into the picture.
The next step we have is that we know that there are a lot of people in these neighborhoods who may already have diabetes, but don’t know it. And if you don’t know it, you don’t have any ability to take action to kind of help reduce the complications as the disease progresses. And then there are also people in those neighborhoods who may have pre-diabetes who with access to things like some healthy foods or a physical activity infrastructure can really help to delay the onset if not prevent the onset of diabetes in the long run. So that’s our second part. And we do that by having neighborhood community health workers that are based in each of these neighborhoods that are resources to people and are out raising awareness and helping to encourage people to be screened if they’re at high risk, as well as connecting them to services and things that can help improve their health overall.
Our final piece is that we are working… We have resident driven steering committees in each of the three areas that really are working hard on the prevention aspect. And I think this is one of the things that I’m most excited about as well is that we are really, in the long run, wanting to reduce the rates of diabetes. And to do that, we need to go after policies, systems and environmental factors. So each of the three neighborhoods are selecting an area that they’re focusing on and then working to put that into place so that maybe 10 years down the road we’ve actually managed to make a dent in the rates of diabetes in the areas.
Patrice Graham-Adams:
Something that was somewhat of a shock to me, but should not have been surprising, was how quickly and drastically some of the community health workers at Eskenazi, some of their clients A1C’s dropped drastically immediately just by having that support, having someone to encourage them, educate them, empower them to take more control of their health. And it could, I don’t know, it could have been large changes, it could have been very small changes, but the fact that after a couple months, it’s like a three point drop in A1C. And we’re like, there’s no way this is actually happening, but it’s right there in their record. So that was one of the shocking things that was very surprising to me.
Something that has happened with having the community health workers, and I’m talking about both the Eskenazi and the neighborhood based community health workers, is how we are establishing partnerships and collaborations within the community, across the board and how our neighborhood steering committees are a resource to them. And they are also a resource to the neighborhood or to the steering committees in these neighborhoods, because they are working with their neighbors. And although there’s no names mentioned, there’s no identifying information that’s shared, it gives the steering committee kind of an idea of some of the situations or even barriers that people are facing within their very community. And so they’re able to better address some of those things within their own community. And I think that has assisted them in creating some of their primary prevention project ideas, to be able to make sure that it’s inclusive of what’s of the face and what’s going on in their community.
Phil Lofton:
The DIP-IN project has already had some remarkable success working with communities to affect change in their neighborhoods. And access to care doesn’t just mean access to doctors and nurses. Here’s community health worker, Ron Rice, on a fun program DIP-IN started during the pandemic that has improved health in his neighborhood.
Ron Rice:
One of our action teams that we have in our quality of life program is arts, parks and public spaces. And so obviously we want to help increase the attendance in the parks. Obviously, if you’re in the park, you’re not at home sitting at on a couch and watching TV or playing on your phone or playing a video game and you’re out in the parks and you’re getting… just the fact that you’re getting out even just one time a day, it doesn’t have to be for a long time, but if you’re getting out one time a day, and just doing it every day, that will have an effect, a positive effect on your overall health. And so our committee is really dedicated to improving the parks so it makes it more attractive, increase the value of the park so that we can get more investment in those parks to give people what they asked for.
And also like myself, I kind of started this thing last year, where I helped get a aerobics class started, a Hip-Hop step aerobics class started, but I used myself as a Guinea pig, because I’m diabetic. And so I started, it was myself and one of the, a local personal trainer who works at our Planar House, and we started to not only do the workout and then we did dip in and walks as well, like walks around Watkins Park, but then we also went to each one of the parks at like six o’clock in the morning and did a different workout to show other things that you can do at the park other than what you see. So you didn’t just saw a swing set and slides, but you saw there were bars of benches that we would do workouts, kind of like bootcamp workouts with the things that… outside of the swings, we would be on the benches, we would be doing pushups, sit-ups, doing sandbag workouts, jump rope, stuff like that.
I wasn’t surprised by the Hip-Hop step aerobics because I know that’s a fun activity that’s very popular really in every neighborhood, but definitely in Black and Brown neighborhoods. And that one in particular, they were seeing… the entire group was seeing an average weight loss of about eight pounds a month.
In fact, I really want to put a lot of focus on one particular young lady who’s there, where she started, and she is so thin now. And she has been going for the entire year and she’s also diabetic. She was born with diabetes, she’s got an insulin pump. And to see her progress, I even was bringing my mother to the DIP-IN in walks, and to see her progress, she’s a 30 year diabetic and the way that she was just walking, just on Wednesdays, she wasn’t walking any other day, she was just walking every Wednesday, that not only improved her weight, her weight started to drop, because she wasn’t doing anything before that because she’s 69, but also she was getting more involved in the social circle with the folks who were walking with her. And so it improved her overall health, it cut her stress down, that has an effect on your diabetes as well and your hypertension.
So there’s so many other… so many things can happen by just making one action or making one commitment or making one sacrifice that you’re going to say, I’m going to take an hour or even a half an hour today and dedicated to myself so that I’m in a better shape. And when you improve yourself, everything else improves around you.
Phil Lofton:
Ultimately, making sure that care is accessible to people that need it most is an issue of health equity. Here’s Dr. Gonzalvo again, on what equity means to health and to communities.
Jasmine Gonzalvo:
When we are talking about health equity, health equality, and the social of health, I do really like to start off by defining a difference between what health equity and health equality is. When we’re talking about equality, it’s for example, let’s say that you have a table and there are three identical chairs at the table, but you have a baby and you have someone in a wheelchair, and then you have an able-bodied person that are wanting to sit at the table and you have three identical chairs. The able-bodied person can sit in the chair without problem, but the baby, for example, needs a high chair to be able to safely sit at the table. And the person in the wheelchair needs the chair to be moved to comfortably sit at the table. So equality would say, three identical chairs at the table are what’s necessary and everybody’s happy. Equity rather says, we need the high chair to accommodate the baby, we need a space to accommodate the person in a wheelchair and we need the chair for the other person to sit in.
So that’s the type of work that we’re talking about in terms of really finding what disadvantaged communities really need to level the playing field, so to speak. So, that is where I really like to start off the discussion of how the social determinants of health really play a role in health equity. So when we’re talking about the social determinants of health, we are talking about, for example, the neighborhoods which communities are geographically located in, we’re talking about the access to healthcare, the proximity to health clinics. We are talking about economic stability and access to jobs. We’re talking about education and the school systems surrounding their community. And those are really what we’re focusing on when we’re talking about the social determinants of health, that again, contribute to this idea of equity.
If someone who doesn’t have great access to let’s say really quality education, consistent strong education, then that is a piece that eventually could affect their health from a lot of different aspects. It can affect mental health, mental wellbeing, and affect general health and overall health in the long-term. That’s just one example of how the social determinants of health play a role in health equity. And when you have imbalances of the social determinants of health, you can really see problems with health disparities and health equity.
Phil Lofton:
When we look at how access to food can impact diabetes care and outcomes, we’ll see you then on the problem. Music this episode was by Everlone and Blue Dot Sessions. Our theme and additional musical cues were written and performed as always by Scalable Solutions. The Problem is produced at Studio 134 in the Regenstrief Institute in Indianapolis, Indiana, where we connect and innovate to provide better care and better health. Learn more about our work and how you can get involved at regenstrief.org and see bonus content from this episode, including sources, pictures and more at regenstrief.org/theproblem. The Problem is written, hosted, edited, and produced by me, Phil Lofton with additional editing by Andi Annibal, John Erickson, and Jen Walker, web design and graphics are by Andi Annibal, and social media marketing is by Jen Walker. Special thanks to this season’s advisory council, including Tami Hannon, Janet Panoch, Lisa Yazel, Julie Pike, and Tiffany Doherty.
