The Diaper Divide

Did you know that one out of two people with incontinence will isolate themselves at home because they don't have enough absorbent products? That startling and unfortunate situation - that too many adults simply can't afford the basic necessities to care for themselves - is called The Diaper Divide.

This is something we can all do something about. Today's guest is Aleece Fosnight, a board-certified physician assistant specializing in incontinence conditions and a medical advisor for Aeroflow Urology, and she shares with us details about the Diaper Divide and insight on what we can do individually and collectively to make a difference for millions. 

To visit Aeroflow and learn more about the Diaper Divide, click here.
To visit the National Diaper Bank Network, click here.

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Music:
Rainbows Kevin MacLeod (incompetech.com)
Licensed under Creative Commons: By Attribution 3.0 License
http://creativecommons.org/licenses/by/3.0/

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Transcript

Bruce Kassover: Welcome to Life Without Leaks, a podcast by the National Association for Continence. NAFC is America's leading advocate for people with bladder and bowel conditions, with resources, connections to doctors, and a welcoming community of patients, physicians, and caregivers, all available at NAFC.org. 

Welcome back to another episode of Life Without Leaks. I'm your host, Bruce Kassover, and joining us today is Steve Gregg, the executive director for the National Association for Continence. Welcome, Steve. 

Steve Gregg: Thank you, Bruce. I'm glad to be here. This ought to be really exciting today. 

Bruce Kassover: Yeah, I'm really looking forward to this. Joining us today is Aleece Fosnight, she's a board-certified physician assistant specializing in sexual medicine, women's health, and urology, and she's also a medical advisor for Aeroflow Urology. If her name sounds familiar, it's probably because you've listened to the two-part podcast we did with her previously on men's health, prostate, BPH, mental health, anxiety, absorbents... And if that doesn't sound familiar, we recommend you give it a listen because men's health is something that isn't talked about enough, especially when it comes to incontinence, and that was a really enlightening conversation. 

Today though, Aleece is here to talk with us about a really pressing issue right now and it's about diaper availability and it's called the Diaper Divide. So Aleece, could you tell us a little bit more about what that is? 

Aleece Fosnight: Yeah, absolutely. Well, thank you again so much for having me back. I'm really excited to talk about this very important issue. And with the Diaper Divide, we know that it's a very pressing issue and something that doesn't get talked about a lot.

We think a lot of folks that are needing diapers as being infants, children, but really it's across the lifespan. And it is something that, you know, working with Aeroflow Urology, being able to bring up the awareness on those that are having not just necessarily urinary incontinence, but fecal incontinence as well, and knowing that with the Diaper Divide, bringing again this awareness of the fact that these products are expensive, access to products can be really difficult, and that a lot of people are actually deciding whether they can have food, pay for their utilities, have a roof over their head, or buy diapers.

With the rising cost of diapers and with tax on diapers, and especially what we saw through COVID and the pandemic, it's just accessibility, and they're hard to find, or the ones that you need we can't always find them. And we know that just like medications, food, and water, that diapers are also very much a basic human necessity, and unfortunately, a lot of people are not able to get that and having to make some really tough choices.

Bruce Kassover: So tell us, how, how did awareness of the Diaper Divide first come about even? I mean, is this something that people have known about for a long time and just ignored it? Or is this sort of a sudden realization that, “Hey, there's this need that, that, that we're not really paying attention to?”

Aleece Fosnight: Well, with Aeroflow Urology being really dedicated and focused on having accessibility to incontinence supplies, what Aeroflow kind of found as this common theme that I kept hearing from their customers was, “We can't find supplies. We don't know where to go. We don't know where to get the supplies.Is there anything that you can do to help us?”

And when the people at Aeroflow Urology were having conversations with these, these individuals, started digging a little bit deeper and asking these very, like, again, important questions is, “Are you having to decide between buying food and diapers for your, for your family?”

You know, and if that's the case, well, what are the other things that people are deciding on or having to make again, these very difficult decisions on? You know, what is that necessity for their individuals? And so, when this came over and over and over again, it was like, you know, we really need to dig into this a little bit more and figure out what's going on.

So that's when they developed a survey and sent out a survey to just over 1100 individuals that, then, all of this information came back, and it was shocking. It's shocking of how many individuals are having, like I said, to decide between food, clothing, if they're able to wash it, how are they getting just to the next day?

You know, we know that a lot of folks are living paycheck to paycheck, but this is more than that. Like, this is just, this is severe. And the fact that it isn't just these acute. Decisions that are having to be made that these are a longer lasting than that. If this is leading to urinary tract infections or skin breakdown or skin infections right now, we're having to have access to go to the medical provider.

Now, granted, I think that one of the, one of the best things – I'm going to play it optimistic here, right – and it came out of the pandemic was really highlighting the use of telehealth. And we can definitely use telehealth for, for a lot of individuals, but that's also assuming that people have a computer in their home, that they have access to internet, that there's somebody or an adult potentially that could be there, especially if we are looking at that these are children that are needing accessibility or we're having questions about something.

So, you know, it's, it's great that we have the, this technology, but again, we also have to realize that folks are still hurting for things. And again, these… technology is luxury and a very much a privilege for, for a lot of us. And now we're thinking about diapers and food and heat and utilities for, for individuals, and it's, these are very, like I said, just unfathomable conversations that we're having with folks and the fact that they're having to decide for what those basic needs are for their family. 

Bruce Kassover: Well, technology may be a luxury, but diapers and absorbent products certainly aren't. I mean, we talk a lot about how isolating incontinence can be because, you know, people are uncomfortable putting themselves in situations where they might have accidents or their leakage might be detectable because of, you know, odor or anything like that. And I would imagine that this only magnifies things significantly. If there's anything that's going to be isolating, it's the fact that you don't have access to some of the most fundamental products that you really need.

Aleece Fosnight: Yeah. And one of the things that the survey actually found was that one in two people stay home because they don't have enough products to last them through and because they're having to reuse them. Or they're having to use socks to put into their underwear to capture and have the absorbency because they're leaking. So, you know, it's, it's those sorts of things to again, not feeling like you're being able to get out. And like you said, just be, it's very isolating. 

Steve Gregg: Aleece, there's money that's been set aside by the federal government to cover incontinence supplies which includes more than just absorbent products. I think there's $298 million that covers catheters, and it's part of, each state has an allocation for HHS, Health and Human Services, right? And historically, that's always been considered the Medicaid folks that potentially qualified. 

Over the years, we keep hearing about this other group, so people that have Medicare, where these products are not covered and they do make some money – I don't know what the household incomes are, but they're not part of that group – that you would say are on the lower socioeconomic group. So are you seeing the, this data from those that are financially at the lower spectrum up into sort of the groups that would go, “Boy, historically, those people are typically covered.”

Aleece Fosnight: Yeah, absolutely. You know, when we think about the, like, median income now for folks, it's changing drastically this, you know, inflation within economics right now and over the past, even, you know, again, 3 or 4 years has just been incredible of the fact that we're thinking about those that, you know, are making, you know, 6 figures now is, it's not getting you by by any means.

So, when we're looking at, right, lower levels of income and having accessibility, there's this, these folks that are stuck in the middle where they make too much money. They can't get health services from their health insurance. You know, they don't qualify, or those sorts of things, you know, or they're having, you know, again to, like, work extra to be able to make up the cost of these products because they aren't, aren't able to get them, you know, or they're trying to stop services or, you know, talk to other folks about, well, what are my options are what should I do? How should I change? You know, how should I change things within our household to be able to afford to these products? So you're right. I mean, you know, when we looked at even the levels of income from the, from the Diaper Divides survey, you know, a big part of these folks were sitting, you know, somewhere in between, you know, $25,000 a year to $75,000 a year. It was a big part of it, but even a big chunk of change on the 16 percent of them were from $75,000 to $100,000. Gosh, I remember when people were, like, making $80, $90, $100,000 a year and you're like, “Gosh, that's so much money.” and it's just, it's just not the same anymore.

Steve Gregg: Well, you know, one of the things that we've seen when we started looking at household incomes is the way you just described it in some ways doesn't tell the full picture. So, so for example, the WIC programs –  Women, Infants, Children – that was created years ago, a family of four making $52,000 is eligible.

And people say, well, you know, $52,000 is a lot of money. And then if you think if you have two working adults making $52,000, that's not a lot of money. That's a very different relationship. So when we talk about somebody, a household income of $80,000, if 2 people are working at $40,000, you know, that's very different and then paying for child care and other pieces.

The other piece I'd like you to talk about is, we had investigated sort of how to help a little bit a couple of years ago, and we found an organization that is really wonderful. It's called the National Diaper Bank Network. And there are some 300, it's probably grown now, but at the time there were 310 chapters across the country, but of the 310 chapters, less than 5 gave adult products.

So it's a great program for infants and harder for adults. And so we keep thinking, “Well, it's really hard to get people to donate or give diapers for babies. It's really hard to get people to do something for adults.” Has that been your experience?

Aleece Fosnight: Oh, absolutely. There's these, you know, narratives I think that are spread out from a sociocultural perspective of, right, kiddos are not able to completely function on their own, right?

They need assistance, so that's why they have adults there. It hasn't caught on a whole lot in the United States, I will say, in other areas of the world it has. The fact that with an aging population and we are getting to a place of, we need assistance and that folks, they're not able to afford assisted living facilities anymore.

That's a lot. A lot of families are taking care of their elder parents or elder siblings. Even I see that a lot as well and they're not able, they're, they're using their funds right to take care of the, of this other person and this adult, and we know that from functional incontinence, overactive bladders, you know, getting people places, and then what's happening is, right, this person is alone at home and sometimes by themselves, and they might not have the capability to be able to change their products as much. So again, it's really highlighting and bringing awareness that it isn't just kiddos that we're having this struggle with.

It's definitely adults. And I'm going to even say, you know, we're thinking of folks that are like, over the age of like, 65 and 75. However, there are lots of individuals who have incontinence, too, and I'm going to throw this out because it is a little bit more common in our female population of a lot of women that deal with incontinence from complications from childbirth, or they didn't have access to focus on their pelvic floor, or their insurance didn't cover something. So there's, there's lots of breakdowns. This is a huge systems issue that I know we could talk about for days, you know, on end, and, you know, it's just it's just so sad of the fact that people are suffering in silence with their, with their incontinence and their concerns. They're embarrassed, they're ashamed. There's a lot of shame that's around it. You know, I think we'll probably talk about a lot of the mental health aspects that come to it too, with depression and anxiety and this isolation. And so it's just this vicious cycle that continues to perpetuate and at some point we've got to just stop it, get in there, and intervene and be able to, to support folks.

Bruce Kassover: I just can't get over the fact that you said that your survey showed that one out of two people, that literally every other person limits their exposure, you know, limits themselves, isolates themselves at some point just because they don't have enough products. That's absolutely mind boggling.

Aleece Fosnight: I know. Yeah, it's ridiculous. And we know how vital it is to the human brain with connection and feeling a part of something, right? A part of a community being out there being involved. It's better than any antidepressant out there. So it's no wonder why we're seeing so much increase of mental health concerns, including depression and anxiety.

I think we see a lot with depression. We have a lot of talk about depression. But I don't think that anxiety gets the spotlight as much as it should, too – this worry, right? People worry and it worries them so much that they start having abdominal pain and abdominal concerns. So now the family is thinking, “Okay, well, maybe they, they're having a digestive issue and I've got to take them to the, to the doctor.”

And then there's nothing that they can do, and they're thinking that this is all in their head. And just that again, more perpetuating and gaslighting of going, “Oh, they're just, you know, they're just old, they're just, these products…” and it's just, it makes me so upset that we, that we are doing this. I think in one of the surveys or one of the interviews that I had done, I talked a lot about provider bias and ageism with that too, right?

Again, I think that that's where a lot of this comes into play with having more conversations around children and needing incontinence products or even folks that are differently abled or have a concern where they're not able to have a functional bladder. Spina bifida spinal cord injuries, those sorts of things.

And but again, this, the ageism, you know, comes out is, “Oh, this is just something that you have to deal with.” And there's nothing else that we can do when we, if we would just dig a little bit deeper and figure out like the root of it, then we might be able to support our folks better for a better quality of life. They're going to be living longer. They're going to be living with less comorbidities and less complications as well. 

Steve Gregg: So we talk about raising awareness. And as you might imagine, NAFC, I've gotten at least two, if not four emails on this very topic this week. So, if we're going to raise awareness and get people to act, who are we targeting? Who needs to know about this and what do we need them to do?  

Aleece Fosnight: I mean, I'm going to say everybody needs to know about this, but that's, that's my bias as a urology PA that everybody should understand their pelvic health and that includes bladder and bowels and sexual function. But the thing that I think we really need to start a lot of with is with providers, that we need to be having these conversations, especially with our primary care providers of folks that are saying, and screening and going, you know, “There are lots of my patients that also have urinary incontinence. Is this something that is happening with you?” And that's how you have to frame it. And it's this kind of, like, permission-giving conversation rather than say, “Do you have urinary incontinence?” They're going to say, “No” every time. Are you kidding me? If you have a closed ended question like that, it doesn't leave you much room to dig in and investigate a little bit further. 

And so if you just have that more openness and conversation with those folks, then, and then getting them to the right people. But then it's also knowing, like, where to get it and I think that providers are great, great places to start as a liaison, too, because they are going to be able to say to their office manager to their medical assistant, “Hey, can you get that information on where this patient can get some diapers? You know, where, where can I pick this up? Or can we give him this phone number?” So they can call and get and get them connected to somebody.

It's just taking that extra step. So, for me, I look at it as my responsibility as a health care provider to be able to connect my patient with those services and those resources that they need. I'm not going to be able to make that phone call with them every time. And I'm not, I don't want to speak for other providers, but just some of the other folks that I have heard, it's a big commitment. You have to go the extra mile and a lot of providers aren't willing to do that. You're doing this on your own time. You're not getting paid extra to do this. And it takes time for you to build up your, your resource bucket to be able to give folks this information.

But for me, I mean, I just, I love what I do so much and I want people to have just this great, robust, joyful life and incontinence is limiting so many people from being able to have that. 

Bruce Kassover: You have me convinced that this is more than just a real problem. It's an urgent problem. So tell us about your partnership with Aeroflow and what they're doing with the Diaper Divide program and how the program works. 

Aleece Fosnight: Yep. Absolutely. So they're trying to make it as easy as possible. Like I said, after having conversations early on with a lot of their customers and recognizing, okay, there's these common themes, they came out with a survey and again, that survey really highlighted some very, I'm going to say, disturbing numbers.

I think we all knew that it was bad. I don't think that we knew how bad it actually was. And, you know, the quotes from the respondents. I mean, will just, will hit you at your, at your deepest, and the things that people are saying in terms of what they are, again, deciding to do, the decisions that they that they are making.

So, when we did the survey and got the results back, we definitely created a lot of awareness from a social media campaign. We highlighted on the website. There's a white paper that was written by it as well. So that we're getting access to more folks. So it's easy to be able to, like, “Okay, here, here are these infographics sending it out there, getting it on social media.”

And we all know how impactful social media actually can be. And when you start to see that, and, you know, like, “Oh, my gosh, well, my loved one is having this issue, or I am having this issue,” helping to create again, some community, even though it may not be… And then also partnering with the National Diaper Bank Network to be able to raise, again, more awareness, connect people to these resources. It's what's going to be really great. They also have a resource at Aeroflow where they will help you find out what your insurance is going to cover. And then once we find out what your insurance is going to cover or not cover, then we can start looking at plans and what your need is.

Is this something that you need to have 6 diapers a day? Do you need 10 diapers a day? And then who is deciding this, right? Like, this is the other problem that makes me gets me a little, a little fiery is, is the fact that we are, we – meaning like, the United States and the government – are putting these stipulations on,

“Well, you're only allowed to have 4 diapers a day,” or “You're only allowed to have so many.” Well, who's deciding that? And who says that you can't have more than the allotted? And so I write, I write lots of letters all the time to insurance companies and to other companies that are dispensing products to say, “No, this is actually how much that my patient needs.”

And this is, these are also the supplies that they need to, so, again, we're also helping with being able to provide some talking points to providers as well. How do you write these letters? I think that's the biggest thing. And one of the biggest barriers for providers is, “I just don't have time. I just don't know how to do this.”

And so it's being able to give them those resources, too, to help them connect patients with those resources through the provider as well. 

Bruce Kassover: If I’m just a regular person, is there a way that I can participate also that, something that I can do to address the issue? 

Aleece Fosnight: Yeah, absolutely. So whether you have a loved one or you don't, or you just are, you know, feeling very compelled and passionate about this Diaper Divide, there's actually several ways that you can do it, and one of the ways that I would encourage a lot of people to do is go sign the petition. There's a petition. If you go to Aeroflow Urology, or you just type in “Diaper Divide” on the website that you can actually click on a button that says “Sign the Petition,” and what our petition is doing is, it's aiming at expanding insurance coverage for these incontinence products for all ages, again, not just the children, the younger folks but again, for all ages that are there. And so the more that we can do this, and the more that we can show that people are interested in this, that is what's going to get those insurance companies to turn their heads to say, “Oh, maybe we do need to look at this and and be able to change the way that we're that we're doing this.” And so that's going to be from a national and a state level as well. 

Donate. Donate these products, too, and be thinking about those folks that they're not getting just, like you talked about, right? We're donating a lot of diapers for children, for infants, but we're not talking a lot about incontinence products for our older adults, as well and different sizes. I think that's the other thing too, is thinking about smaller sizes, larger sizes, right? People come in all shapes and sizes and so, from a diaper perspective, you know, thinking about extra larges, XX larges, those are going to be the ones too that some folks may need, too.

Thinking about incontinence pads and pad products. You know, we talked about men's health last time, too, and there's different pads for different genitals and different pelvises, so I would say to think about those men and the products for them to being able to capture the different pad for them can be really helpful.

Advocate. It's my other favorite things to do is get out there talking to your local representatives and your legislation when you're having conversations with them and, you know, bring up the question. “Did you know about the Diaper Divide? Have you heard about this? Do you have a loved one that needs incontinence products? Or do you know of somebody that needs incontinence products?” And I guarantee you they will say somebody, will say something about it, whether it's their aging parents or a child or somebody that they know, I think that that's really, really important to have that conversation with them as well.

Share on social media, right? Again, we know the power of social media. You can always use #DiaperDivide to be able to bring more awareness about that and put links on your social media as well. And that's going to really raise awareness and get people out there clicking on this and seeing what's out there for those products and for their loved ones. 

And then being able to reach out to Aeroflow Urology also and just see, even as somebody who may not need any incontinence products, what can you do? So, sometimes partnering with these companies can be really helpful again, just raising awareness. A lot of times they just need some, some more people to post or to blog or to help process things. So we're always looking for folks to help us in that in that capacity, too.

Bruce Kassover: Is there a place where I can just donate directly to the cause, funding, rather than actually trying to get products myself?

Aleece Fosnight: So I know, yeah, if you do the National Diaper Bank Network, they will take the monetary donations as well. If you are going to donate to local, I always call first and see what products do they need. A lot of times if you donate money to more of the local places that are taking these products, it's really difficult because that means they have to have somebody then that goes to buy it.

So, sometimes that can be a little bit difficult from a timing perspective. Or again, we talk about like access, they may not be able to get the types that they that they need. So, most of the time, I usually encourage people to call their local places, even like food banks. You'd be surprised, too, or sharing houses, of how many people will really love to have those diapers as well.

But give them a call, too, but if you would just like to make a donation, you can go to the National Diaper Bank Network dot org and right in the top hand corner, there's a little button that says “Donate.”

Bruce Kassover: Well great, but I also really like your idea about, you know, using things like social media. I mean, it's because social media is free and it really can be a good way to generate awareness reaching out to legislators who could make a real difference.

That would be that would be amazing because, you know, it's very nice that there are people who are charitable and generous. But it'd be much nicer if there were programs that were available that could help people on a really broad scale.

Aleece Fosnight: Yeah, absolutely. You know, I'm really big on root causes and finding out what that root cause is and fixing it at that, at that place. I love the fact, yes, just like you said, charitable things and giving, you know, giving diapers or giving monetary means… That's just a band aid though. We’ve got to, we’ve got to fix it at the systems level. And doing that through legislation and advocacy is where you're going to get it. 

Bruce Kassover: Well, Aleece, we really appreciate the time that you've given us today and all of the effort you and the folks at Aeroflow are putting into raising awareness and trying to generate solutions to the Diaper Divide because it really is something that's critical. It's critical not just to us at the National Association for Continence; it's critical to literally millions of people and their families that they have the resources that can give them the dignity that they deserve. So I really want to thank you for everything that you're doing. 

Aleece Fosnight: Oh, thank you so much. And thank you for creating a space where we can talk about this and have conversations and normalize this too. And I use the word “normalize” in kind of that capacity, because although incontinence is very common, I will tell lots of people it is not normal and we should be having conversations around this to, to really optimize people's continence and their pelvic health in all aspects of their life.

Bruce Kassover: Yeah, it reminds me, one of the things that we'd like to say at the National Association for Confidence is that “There's no shame in being human.” And I think that, yeah, this points it out. So thank you, Aleece. 

Life Without Leaks has been brought to you by the National Association for Continence. Our music is Rainbows by Kevin MacLeod. More information about NAFC is available online at NAFC.org.