Advocacy for Patients with Obesity

[00:00:00] Welcome to Heart to Heart Nurses. Brought to you by the Preventive Cardiovascular Nurses Association. PCNA's mission is to promote nurses as leaders in cardiovascular disease prevention and management.

Geralyn Warfield (PCNA host): On today's Heart to Heart Nurses podcast episode, we are excited to be partnering with Medical Alley to bring you the second part of this three-part series on cardiovascular disease and obesity.

We hope you enjoy this special guest episode, and if you'd like to hear more from Medical Alley, you can follow Medical Alley podcast or visit their website at medicalalleypodcast.org. Enjoy!

Frank Jaskulke (MA host): Good morning, good afternoon, and good evening to everyone out there in Medical Alley. Thank you so much for joining us on another episode of the Medical Alley Podcast in a special podcast; our second in a series in partnership with the Preventative Cardiovascular Nurses Association on the topic of obesity.

We're so appreciative of the partnership with the PCNA to produce this podcast series, and today I'm joined by two wonderful guests that are going to help us talk through this topic. Starlin Haydon-Greatting, who's a pharmaceutical epidemiologist specializing in diabetes and cardiovascular disease, and Garth Reynolds, who's a patient and also a pharmacist. Starlin and Garth, thank you both for joining us.

Starlin Haydon-Greatting (guest): Thank you for inviting us.

Garth Reynolds (guest): Thank you.

Frank Jaskulke (MA host): Yeah. Maybe the, the place will start for, uh, this topic is, I’d appreciate both of your perspectives on, you know, what are some of the, the challenges that are out there for individuals who might be seeking medical coverage or medical care for obesity treatment. And maybe Starlin if you wanted to start, and then Garth we’ll come to you.

Starlin Haydon-Greatting (guest): Well, I know what Garth's going say, so I'm going to hit the cost of care, the access to care, and proper insurance coverage from a health [00:03:00] professional advantage point.

And Garth, what do you think the number one challenge is?

Garth Reynolds (guest): Well, I think a lot of the structure of how, not only with health insurance, but also the issues with pharmacy benefit managers (PBMs) and a lot of the barriers that are erected that just prevent patients from having readable access and the multiple hurdles that patients have to go through. We can discuss more about that.

Frank Jaskulke (MA host): Yeah. Maybe could you expand a bit on that, about what some of those challenges are and then I might ask both of you, could you talk a bit about how are the insurers, how are the payers deciding, you know, what and how to cover the treatments.

Starlin Haydon-Greatting (guest): So, one thing I want to say is the underlying process here is stigma. So no matter where we go, the stigma is the underlying issue that is directing or redirecting things. But I'm going to let Garth go into his journey in the barriers based on that stigma.

Garth Reynolds (guest): Yeah. [00:04:00] Thank you, Starlin. And you know, just some of the experiences that I have had even go back to, you know, what we have with the organization that I work for. Our plan design actually had it as a hard exclusion for any medications on weight management. And I think, you know, initially that those type of inclusions were probably included in there for, you know, those who were doing cosmetic, you know, avenues of treatment for weight loss.

But whenever we start to look at weight loss as a contributing factor to other disease states that, you know, it became a harder climb. And, actually, whenever I was working with my physician and my physician team and provider team, because I was actually looking at, you know, examining everything from working with a nutritionist all the way to, you know, working with Starlin and working with other healthcare providers. When we decided to go down the route, [00:05:00] looking at medications that were, would particularly be helpful here, we were actually getting a hard stop, not even a prior authorization request. It was, “This is excluded.” And even though we appealed saying, well, if this patient had proper weight loss, this would be, you know, a contributing factor to both the cardiovascular and their diabetes condition.

And it wasn't until Illinois had passed some prior authorization reform language, which the organization I worked for helped usher in with other healthcare organizations. That those type of prior authorization barriers were removed. And so, at least for that type of plan that I have, that took away that barrier.

But you still see continued whenever, you know, patients may have to increase or utilize any other type of other medications, there are these barriers and really it gets to a point where some patients will probably just throw their hands up.

And so we, like Starlin said, have to remove these unnecessary barriers to care. Because if we can really get, allow practitioners of all types to be able to work with patients in reducing their weight, whether it's through diet and exercise, or if it's with medication assistance, the overall health of the patient improves. And the insurance companies are not clicking on that idea and seeing that [00:07:00] if you allow the practitioner team to work with the patients, it's in helping their overall health healthcare costs. They're not, they're not making that connection. Right.

Frank Jaskulke (MA host): I mean, it is amazing how something like that comes up in so many realms. The power of stigma combined with, “That's how we've done things for a long time”, that then create barriers to appropriate care that would have benefits for the individual and for society. Maybe Starlin, could you build on that a bit given the work you're doing looking at this?

Starlin Haydon-Greatting (guest): So, we have been part of the CDC's, program, Diabetes Prevention Program, which is basically a lifestyle change program that helps people reduce their weight over a year's worth of coaching and support system. And Medicare does cover that. That's the only thing. That's one of the few [00:08:00] things Medicare does cover cost free. Even the diabetes self-management training by Medicare has a copay associated with it, which deters many people in a fixed income, because obviously in Medicare you don't get those benefits until you retire at 65 or older.

One of the things that has led to commercial and other insurers and other care processes to hold back on covering medications that are used for this stems back from the Medicare Part D in 2003. That was statutory under Congress, set the prohibition of cosmetic weight loss drugs.

And so they keep hanging onto that old limit because medications before coming into this new stage of GLP1’s and SGLT2i’s [00:09:00], and all these new classes of medications that not only help with diabetes, but help with cardiovascular, congestive heart failure, and obviously weight loss helps with all those comorbidities. They're hanging onto that because of the cost of these new medications. Now, the pharmaceutical industry also is - these new medications are not inexpensive. They’re around $1,300 or more a month. And so that's another barrier.

And the insurance companies are looking at [the fact that] sometimes people flip insurance companies every year. Some people, through their employer may only work at that job for four years, so they may have them for a once. So that adds to the chaos [00:10:00] of a person trying to walk through the journey of getting this coverage.

It's also a way to smoke and mirror the process for beneficiaries because then we have gaps in care. We have people that are working multiple part-time jobs, so they don't have any employer insurance, or they're trying to pay for it themselves, or you're a small business, or self-employed people have another increased barrier.

And then we have our uninsured and our Medicare population who don't always have the same access to the very much needed access. Illinois, in fact, just now added diabetes prevention and diabetes self-management education to our Medicaid portfolio. [00:11:00] And that passed in August of 2021. And we're just bringing that all up, getting everybody trained and organized. But, in the past, I was a Quality Assurance director for Medicaid, and we didn't have any of this, we didn't have any programs to help persons with any sort of chronic disease address their self-management of any sort for cardiovascular, for asthma, for diabetes, for weight loss or for right - Addressing those issues for people that are experiencing obesity. Right?

Frank Jaskulke (MA host): Yeah. So you, I think you identified, both of you have identified kind of multiple layers that are creating barriers, stigma, bad policy and old policy. And then the one you just said, Starlin, I hear as we've historically not had an approach in healthcare around chronic disease management, [00:12:00] much more of like acute interventions, pay for a crisis. But then I hear you talk about the new medications, new approaches. We have new ways of treating the disease that then can have very significant downstream effects. So maybe Starlin starting with you and then Garth, I'd ask you both what would you recommend to the medical community and the policy makers to start pulling back on some of these barriers and it expanded access to these treatments and to the care.

Starlin Haydon-Greatting (guest): Well, we have excellent evidence-based medicine that supports the progress of these new medications really getting involved in all the organs. And we've learned so much more. I mean, because of COVID, we've learned how our access to care and our social determinants of health and our diversity has [00:13:00] strained many, many people from the access to quality care.

But from that, we have this advanced healthcare evidence that shows that utilizing these new classes of medications actually will jumpstart it and actually help fill in the gap missing in the treatment of obesity. Having the gut and the brain talk to each other and having remarkable results. Now you have to stay on these new medications. You're on them for your life because when you stop taking them then you may slide back a little bit, but in the process, along with taking the medication you need the lifestyle training and support and, the ability to go and have [00:14:00] those lifestyle changes. Good nutrition, the ability and areas to move, and exercise and, you know, have the support that you need. You can't just start, you know, running marathons, take the medication and start running a marathon. You can't do that kind of sort of things.

You have to build up to that and it takes a team. So, team-based care. So, we have to expand our care not to think about just one person taking care of you, that the pharmacist and the primary care providers, like nurse practitioners and PAs working together along with nutrition and dietician, behavioral health, all that has to be around all of us in that treatment mechanism so that they can have a better outcome. And we have proof of that.

Secondarily, we need Congress to go back and change some of those old rules that they passed back in the olden days, [00:15:00] which is only 2003, right? So, we need to update those and we need them to be based on evidence and we need them to be based on team-based care and listen to the healthcare professionals and to the persons that are suffering with this.

This is, there's an attitude that this lifestyle thing is you, if you just move more and eat better, you can lose all this weight. I've been doing this for 45 years. I've been in this arena, working with my patients, working with my family, working with my friends, working with everybody, and it's not something that you can turn on and off and it happens that quickly and that attitude impacts.

What my, my friend Garth has had to experience in life. They, you know, you get judged and the language is, the language we use is inappropriate. And so, we just need to educate people and be mindful of all that. [00:16:00] So as patients and as health professionals that are involved in this arena, we need to help educate everybody!

Frank Jaskulke (MA host): And audience members who have listened to some of the other podcasts in this series, I think we'll hear some familiar themes around the team-based care approach. Around approaching this with the new technologies and catching policy up to it. Garth, I might ask on your side, you had mentioned, you know, some of the challenges because of the plan design for even for your employer. You know, what suggestions might you have to policymakers or to employers when they're developing their benefits plans to catch up to what we know today in the evidence.

Garth Reynolds (guest): Well, and I think, on that question, you know, really for, first from an employer point of view, really make sure and dig down in the details what your plan exclusions are. It's one of the few areas that, you know, unless you really go and dig for it. - And I know in our document it was on page like 45 [00:17:00] of a multi-page document before we finally got to where our list of exclusions were. And that's just for a small group. And I think sometimes, you know, especially as the larger the company that you may be, depending on your corporation size, you know, those type of factors may not even come into consideration and they should. And really looking are you truly cutting out the unnecessary costs or are you actually erecting barriers to care?

And I think in this area we're definitely seeing that this is definitely erecting a barrier to care. And when it comes to, you know, medical providers as well, one of the things that Starlin didn't touch on is, you know, we have to work on amongst the stigma amongst healthcare providers ourselves. Because even as a pharmacist, I'll say that, you know, not every provider is as open to working with people in weight loss management. It gets back to what Starlin had mentioned about, “Well just move [00:18:00] around more and eat less or eat better, and it'll all go, it'll all be better for everyone.” And it's not about, “Well, let's find out, well, what's going on? Do you have, you know, is your health conditions causing this? Is your medications, you know, causing, you know, you to possibly gain weight.” You know, those type of issues that really need to have, we need to make sure we're more active listeners as healthcare providers.

And then from a policymaker point of view, this is where every patient who listens to this podcast can be part of the solution. It doesn't need to be major organizations going to the legislatures to talk to everyone or going to Congress. Yes, that's going to be important. It's really going to be the motivation to really get things done. But if you've got people from the district talking to the Senator, talking to the representative, saying, “This is my story.” “This is what I'm experiencing.”

That changes things very quickly. It helps reinforce what [00:19:00] we're all doing from an organization point of view because we're going to need changes in removing exclusions, looking at reforms to step therapy in a prior authorizations. Or just making sure these medications and treatments and surgeries and procedures are covered. Because in a lot of states they're not. And so, I think it's going to be a state by state in addition to Congress. And that's what'll take longer for it to do. But once major states start to pass this type of legislation and patient care organizations have success into this and patient advocacy organizations have success, it goes pretty quickly.

But you are going to have some states that are going to dig in and get back into those old mindsets of stigma, and you just have to keep breaking those down and using your personal stories.

Starlin Haydon-Greatting (guest): So, one of the things that, as a pharmacological epidemiologist I have done [00:20:00] is I, you know, longitudinally look at what is happening in a chronic disease state from “zero to zero” is what I always call it when I testify or do hearings.

And so, as a nation, we need to think about when you're born and then when you pass, right? And how do we take care of everybody in between? And if all along the way, you're passing the buck, you’re passing the responsibility on. “Oh, we'll, we'll just move that.” So when people turn 65, suddenly you have a benefit that helps you look at your lifestyle change.

Well, that lifestyle change benefit really should have been moved down into the twenties and thirties and forties and fifties. But we keep passing it along. I will give credit to the CDC for subsidizing and granting grants in this arena. We've had the CDASH Grant, which we [00:21:00] got involved in originally, which helped, educate all the stakeholders in about diabetes and cardiovascular and weight gain and how nutrition issues that were going on in your states and in your schools and in your counties. And then we went to 1815, which gets really into bringing in this lifestyle change and making it available to all access and all arenas, whether rural or urban.

I mean, we have urban areas that have deserts of healthcare. There aren't any pharmacies, there aren't any family practice groups. There aren't any grocery stores.

And so we've been very involved in that and trying to expand and having a kind of chronic disease home along with the pharmacy and pharmacist and the other team care partners so that we can recreate some of this lost healthcare [00:22:00] in some of our gap areas.

And now we're going to be moving forward into another CDC grant process, which is also focusing on that. So CDC has heard and is listening and is trying to address, especially in those underserved areas. And [when] you're in a rural area, you can't drive everywhere. So, I'm proud to say that we've been involved in the telehealth, you know, people moved to telehealth during COVID and that proved that we can address people.

Now, some people with obesity have a hard time moving around and getting to places. I have patients, I have about five patients with an employer group who have a very hard time even getting into a vehicle. And so having a telehealth connection with them has really relieved their stress and their anxiety, and has given them an outlet to be able to talk to us in a [00:23:00] team-based care process to support them so that they will take these medications that are important to them and talk about what they're eating or whatever is going on in their life so that they have a support group to move them.

You can't, nobody can do any of this alone, right? You can't do it. It takes support, partnerships, and somebody that cares about what your outcome is in a positive way.

Frank Jaskulke (MA host): Yeah. And I want to emphasize a thing that each of you said that I thought. Really hit the mark. So important for this, this discussion, but broader discussions. You know, Garth, what you said about the individual advocacy, I say this, I come out of the lobbying world and folks who have not been active in lobbying or politics don't appreciate how powerful the individual story is. And that if enough people tell that story, that really does [00:24:00] change the world. So I want to, for the audience, emphasize what Garth said about sharing your story as you're comfortable with it

And then Starlin what you talked about of the way we have Medicare set up now, where some of those benefits come in for the lifestyle change, but we haven't yet moved to wellness or lifestyle change being part of our regular health insurance or just our regular benefits. I think [that is] such an important and very large macro change that we also need to push and advocate for. So, I appreciate you both having brought those up. at the same time, because they're so critically important and connected.

Starlin Haydon-Greatting (guest): Well the ACA put some things in, like they're screening, but screening for something and then not treating it or taking care of it or supporting it says, okay, you know.

Frank Jaskulke (MA host): Then what.

Starlin Haydon-Greatting (guest): Then what do we do? [00:25:00] And it doesn't really help society, and more importantly, it doesn't help the individual person.

Frank Jaskulke (MA host): Yeah. Well, and that's, you know, maybe as we come in to wrap this, maybe the last question I'd ask you both. So, you've laid out some of the challenges that are out there, some of the approaches that can be taken to help ameliorate the issue. What's the consequence though, if we don't get this right? You know, Garth, Starlin, if we don't make these needed changes, what's the impact that we see as individuals or as a society?

Garth Reynolds (guest): I really think if we don't really get a handle on addressing these issues now we're going to continue to see probably an expansion of the stigma because I think right now what we're seeing is, and I'll even use the current situation with the medication shortages. You know, we have this tremendous problem right now, that's impacting both, you know, not just patients with weight loss, patients with diabetes, [00:26:00] being able to have the needed medications because of some cosmetic use of these type of medications - that's the best way to put it.

And I think, you know, as the companies try to increase their supply, it's also making sure that, you know, patients have access to these medications. Because you know, if, a patient is not able to get access to these medications right now, and they've been on the medication, they're already going to start to see, you know, could possibly see, you know, weight increases because they've been off the medication. And that leads to, you know, people being demotivated and it could lead to even some depressive states. So, you know, we really have to have providers being aware of the current situation, but also, we all need to strive from a policymaker point of view and our advocacy.

One thing that I talk about with legislators on a consistent basis in my position, is stating, [00:27:00] “It's not just enough to cover the medication. You have to make sure that it's affordable” Because we've seen situations even here in Illinois where we've had coverage for a service or a medication class, and either the PBM or the health plan cover it, quote unquote cover it, so they're in the spirit of the law. But it's still at a high cost to the patient.

And so we have to make sure that we have both that, so there's proper equity in the system in making sure that people have the access to care. And I think just making sure that we just continue and educate providers in the ability for these newer medication classes that are out there, that, yes, for some people it's going to make some people have a whole new lease on life in a serious and in a figurative way.

Because some people have tried many diet plans and they've tried and failed and gone up and [00:28:00] down on the rollercoaster on that. And sometimes it takes the combination of everything, including some of these medication aid to help be able to have people have a new lease on life and understand that there is a solution out there, but we have to have the support system to make sure that people know about it and can work with how it best it's going to work for them.

Frank Jaskulke (MA host): Well said. Starlin?

Starlin Haydon-Greatting (guest): Well, and obesity is a complex chronic disease that is misunderstood by those who are not staying up on their education and their ability to learn more about the many facets of the comorbidities that go into this disease state. I mean, it took AMA forever to recognize it as a disease state when all of us who were working with persons with weight issues, [00:29:00] we knew how complex it was and it has only been going and increasing over time. And some of the very people who have created the policies they themselves have gained - If you watch people over time ranges, everybody gains a little weight as we age, right? And so, this is personal.

One in four by 2030 in the CDC statistic, could really - this impacts the society. And I'm really tired of them always attacking the drug and the pharmacy application as the way to cost save in healthcare. That's not what was making our healthcare expensive. Our healthcare is expensive because it's ridden with all these complexities that doesn't allow us to get to the patient. So the patient doesn't have any [00:30:00] impact and yet we've spent all this money getting to that screening or that diagnosis or that piece of paperwork that they finally get to have this medication. And then if they change employers or they lose their job or something happens in their life and then they're uninsured, then they lose that.

Do you see what I'm saying? That we have to treat this better than we treated tobacco addiction. Tobacco addiction was a huge economic impact – is – on our country's healthcare. Yet our approach to looking at obesity has been stigmatized to the point where we can't treat this equitably and have empathy and be able to direct change with our own healthcare professionals.

Indeed, with the [00:31:00] family support mechanism around those, our patients and with the legislation and the rule makers not understanding the complexity of the problem. Indeed, many of them are in the, in the middle of it. I mean, you know, how many times have you gotten - we're all sitting, we're all sitting right now. How many of us have gained, how many people gained 19 pounds during COVID? Many of us gained 19 pounds in COVID because we sat in front of screens and had meetings and we sat in front of the television because we had, we were housed.

So all of us have gained weight and as we get older, it's harder to take off. And so not understanding that there was, there's something between our metabolism and our ability to put all the missing pieces together in order to achieve weight loss is misunderstood and it has to change. [00:32:00]

Frank Jaskulke (MA host): And I think empathy and understanding is a great place to wrap up this conversation. You know, if I were to summarize the need to remove stigma, update policy, update plan design, and then to build systems that provide for access in an equitable manner, because addressing this issue is good for individual health and it’s good for public health. And if we don't do that, you know that we're already seeing some of the consequences, they can become more significant.

So, Garth, Starlin, I want to say thank you both for sharing your stories, sharing your knowledge, and helping enrich this discussion. And I want to say thank you again to the Preventive Cardiovascular Nurses Association for partnering with Medical Alley on this discussion, and for Novo Nordisk for providing an unrestricted grant funding for this episode in partnership with the PCNA.

And folks, that's been another episode of the Medical Alley Podcast. [00:33:00] If you're not already a subscriber, make sure to check out medical alley podcast.org. Or you can find us on Apple, Spotify, or wherever you get your podcast fix. And hey, would you do me one little favor? Would you share this episode with one person? If everyone listening did that, we'd help share this story with a lot more people and help make the change that we all want to see happen, happen just a little bit faster. If you do that, I'd really appreciate it.

Thank you for listening to Heart to Heart Nurses. We invite you to visit pcna.net for clinical resources, continuing education, [00:34:00] and much more.