Nation's First Obesity Bill of Rights

Nancy Glick  0:03  
We are giving Americans an obesity Bill of Rights so that they can know what to say and what to ask for, and if we can change the paradigm, so that people are demanding care. Eventually we're going to be successful. And the health system is going to have to adapt to provide the care that Americans need.  

Terry Wilcox  0:29  
This week on the Patients Rising Podcast, we're discussing the Bill of Rights. No, not that Bill of Rights. This is the obesity Bill of Rights. And it's something we think is long overdue. Welcome to the Patients Rising Podcast. I'm your host, Terry Wilcox, CEO of Patients Rising. I'm joined by my co host, who has personally volunteered to fly that plane, that gets Taylor Swift from Tokyo to Las Vegas in time to watch the big game. He's Bob Goldberg, co founder for the Center for Medicine in the Public Interest. Now you've done the math Bob, is she gonna make it? I mean, we're all waiting, is she gotta make it?  

Bob Goldberg  1:13  
Listen, what I might do is now that Elon Musk's neurolink is actually implanting the neurolink chip in humans I may get one implant and just watch the game without turning on the TV. I think you can actually see it through your eyeballs with the neurolink. You know, that has nothing to do with Taylor Swift but you know as much as I love her music, I'm betting on the 49ers so ,don't know. Don't know. You know what? I'll put the plan on autopilot. How about that?  

Terry Wilcox  1:44  
No, Bob, you can't autopilot that plane. But only because I know you never turn on autopilot for these conversations. And by the way, I'm for the 49ers to which as a Cowboy fan is crazy. But I just can't take Kansas City anymore. I'm done. Right. And it was such a disappointing overall football season. Every time somebody was out and we started going for another team, nobody won who we wanted to win. It was just awful. Today we're discussing a joint venture from both the National Consumers League and the National Council on Aging. Now they've introduced the nation's first obesity Bill of Rights. 

This has been a long time coming. And these organizations have really put a lot of background work into this. They've consulted obesity specialists, public health leaders held town halls. The list goes on. So, Terry, what is in the obesity Bill of Rights?  

Well, first of all, this is something Patients Rising has endorsed. And essentially, it is a document that outlines and then takes you through eight different rights that the obese are entitled to that many feel like they aren't getting, or at least aren't getting to the extent that others who aren't obese are. So why obesity? Why focus on this? Here's our friend Nancy Glick, the Director of Food and Nutrition Policy Over at the National Consumers League.  

Nancy Glick  0:03  
So you have to ask yourself, if you have a disease that affects 42% of the public, and it makes worse 230 plus chronic diseases, why aren't we doing more to treat people who have this problem? And the answer is that this is the most stigmatized disease in America. These people, they need treatment, and doctors don't want to treat them surance companies don't want to pay for the care. Employers have attitudes about you know whether or not they should include treatments, other than, you know, a gym membership as part of their benefits. And so we are, we are just beyond mad about the fact that there are so many Americans who could be treated and should be treated. And if they were treated, chronic disease rates in this country would come down, healthcare costs would be reduced, and the lifespan of Americans would increase. 

Bob Goldberg  3:22  
Well, Nancy says the stigma of obesity made it hard to even figure out how to create a Bill of Rights, which is why they held town halls. 

Nancy Glick  4:41  
But when people opened up, you know, they said I feel invisible. People won't answer my questions. I don't know where to go for information. Or they think it's my fault. You know, I shouldn't be doing things but I don't know what to do. And it's heartbreaking. It's absolutely heartbreaking. So the thought here is we have to get people to first of all think about themselves differently. Because if you're just feeling bad, you are not going to change yourself, you don't have the motivation to do it.

Terry Wilcox  5:18  
And Nancy also says this is an important document to put out into the world because the science of obesity has come so far in the last few decades, and patients need to know that. And more importantly, our doctors need to act on it. 

Nancy Glick  5:32  
So there are a number of these new drugs out there. But here's the statistic: Only 10% of Americans today with obesity have ever seen a medical doctor for any kind of treatment, and only about 2% of Americans have access to these new drugs. So we realize that it's not the science, it's not the medical societies, so many of them have these treatment guidance to tell you exactly what to do. It's outdated attitudes. It's a lack of information. And so we've decided that we need to just sort of change the whole system by empowering people to demand obesity care.

Terry Wilcox  6:25  
You know, there are a lot of outdated attitudes in this space. And it is one of the most, you know, when you're looking at health care in general, and you're looking at, you know, factors, you know, for being less healthy, this is one of them, obviously, you and I both know that. And it is hard, because it is sort of one of those things that you have to do every day, obviously eat, right? You must eat, right? So it's something that you have to do. But yet, everyone's staring at you every time you do it. And in some ways, at least you're feeling that way, I'm sure if you're an obese person. So anyway, I completely understand this sort of process. Now, what are your initial thoughts, Bob? 

Bob Goldberg  7:12  
Well, I listen, I think it's really important to move past that stigma, there is a stigma in some people, and obesity is a clinically relevant issue. 

Terry Wilcox  7:25  
I'm not going to take a deep dive into the Bill of Rights. Because if you took this Bill of Rights, and you put it towards any other disease, just think about this, while I'm reading it. It's a patient Bill of Rights in many ways. But we're transferring it to this specific group of patients, because they so desperately need our support. And this time, right as new treatments are coming on the market. So the right to accurate, clear, trusted and accessible information, the right to respect the right to make treatment decisions, the right to treatment from qualified health providers, the right to Person Centered Care, the right to accessible obesity care and services from health systems, the right for older adults to receive quality, obesity care, and the right to coverage for treatment. 

Bob Goldberg  8:09  
These are things that of course, everybody should have, or rather, that should be treated. All these things are ways in which people should be treated when they're seeking medical care. But there are a lot of, a couple of wrinkles that apply uniquely to people with obesity. And Nancy takes us through a few of these. And here she's talking about the right to respect. 

Nancy Glick  8:32  
Imagine going to see your doctor who disses you, fat shames you. This is prevalent right now, there is data that shows that among all health professionals, not doctors, you know, just doctors, but nurses and social workers, many of them harbored this weight bias. And we have to demand that you know, we not be spoken to in a form that makes us less than because we have this disease of obesity.

Terry Wilcox  9:05  
Now, here she discusses the right to patient centered care and the right to accessible obesity care. 

Nancy Glick  9:12  
Then we need the idea of having patient centered care. The same you would expect for other diseases where you have a care team, and you have the ability to participate. And you are seen regularly. These are all things that right now do not exist for people with obesity. One that sort of surprised me and we learned about through our experts, is really the importance of having the equipment and a health facility that welcomes and sort of recognizes the challenges of particularly people of a very large size. So the scale that exists right now in a doctor's office goes up to 350 pounds. There are people in this country who weigh more than that. And do you know what many of them have to do now? They have to go to a zoo and get weighed. Imagine how terrible that would be.

Terry Wilcox  10:28  
I really can't imagine that, Bob. 

Bob Goldberg  10:30  
Yeah, really. I mean, that's so insulting. 

Terry Wilcox  10:33  
Nancy and I talked about this at length. And there are you know, there is a movement in some facilities to buy the scales that accommodate this, but in some when you're talking about certain doctor's offices, and they don't have the capability, and that is the option in some areas. You know, that's what this needs is more science and other things come to light about how we can help this large portion of our population and like I've said, I have no idea the percentage of, of who would need medical intervention or not. And that's not what we're here to talk about. It's not our business. But the biases we know from this process are very real. They need to be addressed. There's obviously many barriers to care when you're obese, unaccommodating waiting rooms, scanning machines like MRIs. They may not be able to house you. There's a lot of things that people don't think about, that are very real and probably terrifying to those who do have to think about them. 

Bob Goldberg  11:40  
Yeah. Yeah. And look, I can speak on the the flip side, people that have eating disorders, it's the same. As you said, Terry, if you're dealing with drugs or alcohol, and obviously it's very difficult to stay sober. But basically, you just go to zero, you have to eat. And food is all around and food is plentiful. And so all the evidence shows that any kind of modality, you're going to put weight back on, if you don't continue maintaining a regimen that's regardless of medication, whatever. So we do need that support system in place throughout. And it's, I'd be interested to see, you know, whether some of these groups like Weight Watchers and others, I mean, they've been involved in this effort, because we certainly need something more systematic than what people are getting right now. So thank you. It was lovely to hear Nancy's voice again is a yawn is may not know but Terry and I have worked with Nancy on advocacy issues for 10 years. She's wonderful, optimistic, fiery, firm, and we hope you'll take a moment to after listening to the podcast, go to the show notes, check out the obesity Bill of Rights in detail. I think this could help a lot of people.

Terry Wilcox  13:07  
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Bob Goldberg  13:44  
We do have one more story from the news this week that we wanted to highlight. Terry, what's that about? 

Terry Wilcox  13:50  
This is a big one. This episode will air on Monday, February 5, and as we were recording this, we have received word (this is very exciting for Patients Rising drumroll) the Protecting Healthcare for all Patients Act of 2023 may be considered this week, which is great news. This week to go to the floor, Bob. 

Bob Goldberg  14:13  
Well, listen, kudos to Patients Rising. You know, obviously, we've been collectively working on this in tracking this bill for a while. But most importantly, those that don't know this bill would stop federal programs like Medicare and Medicaid from using quality as a metric for setting the reimbursement levels and deciding who gets what. That's great. I mean, that's exactly the way it should be. 

Terry Wilcox  14:41  
Absolutely Bob. There's a better way than the QUALY. The QUALY is, you know, everyone says it's the gold standard. It's just a standard. It's not a gold standard, it's a standard that, you know, came onto the scene with just as many fights as we're having about it now, really.

Bob Goldberg  15:00  
It was never, Terry, it was never meant to make reimbursement decisions. It is a tool for evaluating at a population level, what the benefit is to patients. And, by the way, there's better tools for doing that, there's the disability adjusted life years, which is something that we also did a podcast on the show about that, Darius Lakdawalla, Neal Masia, you know, you have a method of doing it so that you measure the impact relative to the severity of the condition that people have, which the QUALY doesn't do. So there's lots of other ways to do it. But none of these, none of these should be used for making a coverage or reimbursement decision. It should be a clinical decision between the doctor and the patient, using patient level data, and the kind of shared decision making that we've talked about to take steps forward. So kudos to the members of Congress for doing something on a bipartisan basis. That's great news. And again, you know, I just think this is just a proverbial feather in the cap of Patients Rising. 

Terry Wilcox  16:11  
This is the simplest bill, we can link to it in the show notes. I mean, it won't take you long to read, which is really. 

Bob Goldberg  16:16  
It's eight pages, guys. 

Terry Wilcox  16:17  
It's refreshing. I mean, the fact you when you can get a bill with that few pages out of Congress these days, it's refreshing to be able to read it. And so what I'm gonna say for that is for any of you out there, who are, you know, represented by a strong healthcare Democrat, who you think would support this, I would definitely reach out to them. Also Republicans, we don't know that all, you know, to what is the number now it's only like one or two, right that the Republicans have? 

Bob Goldberg  16:48  
Yeah. 

Terry Wilcox  16:48  
We're gonna need every vote we can get, let's put it that way for it to pass, now and it just has to pass on a majority vote, so if you lose a couple of Republicans and gain five Democrats, I mean, perhaps that that works out. But it's close. It's close, because the house is close. But it would send a great message for patients for us to be able to say that it passed the house. What will happen in the Senate, you never know, the Senate is its own beast. But we can get hopefully we can get this done in the house. 

Bob Goldberg  17:17  
Well, more to follow on this. Bills have a way of... and not the Buffalo Bills, everybody just want to let you know, bills have a way of changing as they move from the floor to a vote and from the house to the Senate and back and forth. So we will be tracking all of that for you over the next few weeks. So that's all for today. So thank you for joining us and make sure to follow the Patients Rising Podcast on your favorite podcast player, so you can be notified as soon as a new episode is live. 

Terry Wilcox  17:48  
Until next week for Bob and everyone at Patients Rising. I'm Terry Wilcox, stay healthy.