Greetings and welcome to the CODED Podcast. I'm Katie Stoll, the Executive Director at the Genetic Support Foundation.
Stephanie MeredithAnd I'm Dr. Stephanie Meredith, the Development Director of GSF and the supervisor of our Lettercase National Center for Prenatal and Postnatal Resources.
Katie StollToday we're going to be discussing quality-adjusted life years, qualities, and what harmful assumptions they convey about the lives of individuals with disabilities and how we can push back on practices that are harmful towards disabled people. Today we are joined by Sylvia Yee. Sylvia is an attorney and the public policy director of the Disability Rights Education and Defense Fund, where her work includes projects to increase physical and programmatic accessibility and disability awareness in the delivery of health care services. Both Stephanie and I first met Sylvia during her work on a National Council on Disability report around prenatal genetic testing, but we are thrilled to have her join us today to talk about this topic of qualities, which NCD has also published a report on. Before we jump into the topic, I just want to share a little highlight from Genetic Support Foundation. You can learn more on the Lettercase website.
So, as Katie mentioned, there is a fantastic report by the National Council on Disability that was created in 2019 called Quality Adjusted Life Years and the Devaluation of Life with Disability. And it's part of the bioethics and disability series that Sylvia, Katie, and I were talking about too with the prenatal screening report. So just to give a little bit of background on this, fundamentally, when a scientist or researcher is measuring whether a treatment is worth it and worth the cost, they usually want to know if it either extends a person's life or their quality of life. A measure that was developed to try and determine that was the quality-adjusted life years or the QALY. And QALYs were created to try to assess how much a health intervention can impact both the length and the quality of life for large groups of people. So QALYs are used as a measurement before and after treatment to determine if a treatment is worth making available to everyone. Qualies are used to inform cost, then used to inform cost effectiveness studies. And a particularly popular one used by payers is the cost utility analysis, called C UA. Now, what's really problematic is that the quality score is determined by multiplying a decimal number between zero and one, which represents a person's health-related quality of life. A one represents a healthy person, and a zero represents a person who is usually dead or dying. Interestingly, it's also possible to get a negative health-related quality of life score for severe chronic pain. So that's got a whole other dimension to it. So the way those numbers are determined, that health quality, health-related quality of life number, is usually determined by a questionnaire that's sent out to people with different conditions to figure out what disability weight score to give. And the name of that questionnaire that's used is the EQ5D. So for example, the EQ5D for intellectual disability could range from 0.06 to 0.74, depending on how people answer questions about uh self-care, and there are five different domains used. So if my son with Down syndrome were to get a disability weight score of 0.5, then a year in his life would be considered 50% of the life of a non-disabled person. You can see where that would be problematic for me as a mom, right? So the way this is used in a very simplified CUA to determine how a payer wants to spend a limited budget would look like assuming both treatments cost the same. If a drug would increase the length of life for a person with Down syndrome by 10 years by preventing Alzheimer's, then the quality would be five quality adjusted life years. If another drug increases the life expectancy of a healthy person who contracted a disease by six years, then their quality adjusted years would be six because it's six years times one fully healthy score. So basically, if they're comparing the treatments here, they would say, well, one only benefits by five quality adjusted life years, even though it's increasing the life expectancy of a person with Down syndrome by 10 years. But the other only increases it gets a six because it is increasing the life expectancy of someone who's considered a healthy person by six years. So if you're having to make the decision as a payer between five and six, you're going to choose the one that would cover the treatment for the healthy person. So a person like my son would theoretically never have a treatment approved using quality-adjusted life years unless it were more than twice as effective as the treatment for a non-disabled person. And the problem is that this questionnaire that's used to determine these scores only asks questions about five dimensions of quality of life: mobility, self-care, usual activities, pain, discomfort, and anxiety, depression. But quality of life is so much more complex in reality. I mean, it's our relationships with people, it's the meaning we get out of life. It is, you know, the ways that we interact with our communities. And really, this, you know, assigning a score to a person based on their disability is at the heart of the devaluation of per people with disabilities in this to me. So this is where I really want to dive into a bit with Sylvia and ask, you know, what she's learned about qualities being perceived as devaluing the lives of people with disabilities. And what do these measures say about how the worth of human life and the worth of the lives of disabled people are measured and considered?
Thank you, Stephanie. Thank you for that introduction, both of you. Uh definitely the quality is uh it presents as a kind of u objective math-based formula. But the I think the reason it's perceived as uh as ableist and as devaluing the lives of people with disabilities is uh is because it's really based on uh like a general population. You go country by country. The the survey you're talking about is often given to a country's general population, and you're really then diving into the general population's perception of health uh and the general population's general equation of disability with lack of health. Um, I don't think any of us would presume to know the quality of life, the value of life for someone that we are dissimilar to. Uh like we recognize that really our perceptions of value are specific to our own life. Maybe they apply to people who are very similar to us. And the general population often knows very little or nothing about the lives of people with disabilities. What's imagined is often full of stereotypes. Um, oh, people with disabilities are in nursing homes. Um, they they just dwell on the things they can't do. They're bitter about what they can't do. Um, they don't form relationships well. And there's always this sense of uh stereotypes and personal fears that are often brought in when people are thinking about disability. Well, so if you're going to survey a general population about how the how they value uh about the value of life of a person with a disability, I think you're going to get all these stereotypes and personal fears brought in. Um and the the whole, you know, the the trade-off itself, the question is uh sometimes framed as a trade-off between time and perfect health, right? There's a question, let's say, would you rather have a year of perfect health or two years of life with a specific disability? And and that that kind of a form of question also makes people think I mean that's a very artificial situation. Another way to ask might be, um, as a gamble, right? Well, would you like to have 10 years of life with a disability, a specific disability, or would you gamble to have perfect health or death? You know, like I kind of here's an operation you could take. You could wind up staying on the on the surgery table without dying on the surgery table, or you could have perfect life. And then people are asked to us to figure out well, the what's the probability that would attach to each? Like if the chance of death was only 5% and the chance of perfect health was 95%, would you go for it? What if it was 50-50? The way these questions are asked are like the kinds of questions, it's the way you would ask it if you were um playing a game around a table, you know, because you're like trying to figure out like, oh, what's this person like? What what are they what do they think about things? But it it doesn't really give you uh in an honest or good assessment of how should a society be progressing? What what does a society value? What should it value? What are people growing to to learn more about? Um how is society treating people with disabilities? What are advancements in medical care? Um What are we learning about how to be better, kinder to one another? What are we learning about how to educate and change our jobs? There's so much that's not in there because it's a five-question survey. I think the quality is perceived as being ableist because it is ableist. I I don't have any other answer beyond that.
Stephanie MeredithYeah, you just made me uh it is. It's a really a perverse game of would you rather, right? In a way. And I think you bring up a good point that there really are several different mechanisms that people use to determine that score in a inequality, which is that traded time off, the gamble, and also the EQ5D, which is a questi the questionnaire that's used. Um, but you know, so many of the perceptions people have about disability are based on how people with disabilities are treated in society and not necessarily what it is like to live in the body of a person, of a disabled person, you know, and so if you were to, and I I think that's why we do see it calculated so differently among different countries, because if you have a country, for example, that has real lack of accessibility, lack of laws protecting people with disabilities, perception about life is going to be a lot more negative than it is in a country that has better accessibility. And so it makes it really hard to avoid ableism at all because the perceptions of the people who are making those those assumptions are rooted in, you know, the ableism that all of us carry, but also how their cur how their society that they're in are treating people.
Sylvia YeeOh, and I, you know, I was just going to note too that I mean, in many countries, there's that's a really complex question in and of itself. Like I I was talking to someone uh several years ago from Sweden who said like this the social safety net system there would help ensure that a person with mobility disabilities, say, might get a a wheelchair van to use. But then when they're driving around, there are very few places with curb cuts in the built environment where they can actually get onto a sidewalk, into a store, and so forth. Or in Japan, you you might there are laws in place that you get a new real trans rail station that's physically fully accessible, and yet the culture, cultural views about disability make it extremely difficult for someone with a disability to actually be out in the street and fully accept it, uh, someone with a visible disability. So so there are many, many um cultural considerations that are just tossed in and disregarded.
I wanted um to just understand the way QALYs are derived, um, and just to Sylvia, maybe just to make sure that I've I understand this correctly and and um getting back to something that you mentioned about the valuation and so my understanding is that the um that the survey, the EQ5D that's commonly used, um, would be something that would be assessing these five domains of somebody with a disability or condition that's being evaluated. But then the valuation of how people respond to that is another is kind of gets into that time trade-off or other measures. And that valuation is not typically determined by people who have the conditions that are being evaluated, right? These are most often, and I think in the NCD report they reference that the vast majority of these the valuation that's assigned to this are by people who don't have personal lived experience with the conditions that they're valuing.
Sylvia YeeI think that that would be true, uh, because if it's just in a to give in any general sample of a population. I'm not quite sure how they would um how they choose the the population. Maybe it's just an open call or people who, you know, do you you see the notice on um on a newspaper or it in your in uh um I'm I'm so old, I remember I was gonna say bulletin boards, but boy, no one uses a bulletin word anywhere. It's all everything's ritual.
Katie StollMaybe a digital bulletin board.
Sylvia YeeBut if the way that notices go out, I mean if if you let's say even for like for persons who are deaf, who are not necessarily on um forums, public forums where people are listening to things. Or you can be on social media, sure, but you might be interacting more with people who are in your own culture, and that might be a disability-related culture. I don't know that there's any particular outreach to people with disabilities, various kinds of disabilities, to ensure that you have sufficient representation, yes, from those who are most aware of what it's like to live with a disability. Um, I don't think there's necessarily even any specific outreach to families, to parents of people with disabilities. Again, another group who would at least have some knowledge of what it's like to live with a disability. Or to older persons. So again, there's I think a big distinction between people who age into disability and people who have always had disabilities or who are aging with disability. I mean, there's there are many, many groups to consider. I and to be perfectly frank, I'm I'm not sure what the requirements are to be diverse. I mean, to make sure that you include uh people of different races and ethnicities, people who are LGBTQ. Uh you know, I'm I just don't know how that call goes out. General public is general public, and general public doesn't know a lot about disability in general.
Stephanie MeredithI did want to clarify one thing for the listeners is that so the traded time off and the gamble go out from what I understand to whatever research populations that the researcher is targeting. So, like you might be if you're doing prenatal, you might just be reaching out to pregnant women, right? And asking them, what do you think about this? And Katie knows a lot more about that than I do. I'm just we we we we were doing a little looking into that. And then the EQ5D does ask people with lived experience with the condition, but the challenge with that is that it's written by researchers who have not necessarily consulted with that community. And so the domains that they're asking about are very medicalized and focused on deficiencies rather than the strengths of the people. So, you know, you only get answers to the questions you ask. And that's where it comes back to, you know, devaluing by not being able to even assess some of the things that those individuals might say makes them have higher quality of life. So so that's something I've kind I kind of been learning. Katie, are you did you gather the same about those different measures as you were looking into it?
I guess that my understanding and what I was I mean, I think they kind of go together in some way, right? That you might be serving with the um with the EQ5D people with Down syndrome to look at those five domains, but then it's another group who does not have Down syndrome who is assigning the valuation based on the time trade-off, right? Um I would rather, like Mrs. Sylvia was just saying, I would rather I would trade living one year in perfect health compared to two years with this chronic kidney condition or or whatnot. It's not people who have the people that are setting the values are not necessarily people that have any lived experience or perspective on how they would value that that life, which is um, I think, so problematic. Um especially because we know if I mean in in terms of how people generally like rate rate their own quality of life, people who have disabilities and um often would would rate their quality of life much higher than somebody who has no personal perspective of life with that condition, right? So it's going to provide a lower valuation than somebody who actually knows what it means to live with the condition that we're valuing. Does that make sense?
Stephanie MeredithYeah, because I mean I think of Brian Scottko's study where he uh surveyed people with Down syndrome about their perceptions of their own quality of life, and I think 99% said they were happy with who they are. And I challenge us to get that percentage from any population in general. I mean, that's that's exceptional. And I don't think that the general public uh perceives Down syndrome in the same way. So so yeah, I there there is definitely a discrepancy there. I think that it's you know, that discrepancy again is rooted in discriminatory attitudes in society about living with disability. I also think that it's interesting as we talk about traded time off, because this also came up in our conversation as we were reading some of these articles. But when you have a condition, you almost always would say, or if you have a child with a condition, I would do whatever it takes to extend their their length of life, you know, because I I want them around and I love them. That's a tough one to get at with the traded time off, because how would someone who's living with that condition? I don't know that somebody living with that condition would ever want to say, yeah, at some point, you know, I I don't want to live with this identity. Living with this identity is too much.
Katie StollWe were talking um earlier about some attempts to use qualities in cost-benefit analysis, looking at prenatal testing. And one of the you know ways that they would look at this is the time trade-off question, asking expectant parents, would you rather have 40 years with a child with an intellectual disability or 30 years with a child who doesn't have an intellectual disability? And that is how they're calculating that that valuation and trying to assess whether the cost of additional prenatal testing is cost effective.
I I guess uh I I I can appreciate that there that if you're going to have this kind of attempt to value medical treatments across types of conditions and types of treatments, uh there's go, you know, you're you're going higher and higher and higher in your this is like a hundred thousand foot view of health and and and disabilities and treatments. But it's at some level you're so far beyond reality that it it sort of misses a point. You know, having a child for 40 years with an intellectual disability are 30 years of perfect health. But reality is that no one is guaranteed perfect health for any length of time. Disabilities don't just come at at birth. You know, we live in a world where we have accidents, we interact with one another, we get viruses, we get, you know, this is this is life. And uh when things happen to people, they have to make their decision then. They and their families about how do I continue on? And millions of people do right they do figure out how to have a quality of life, how to live good lives, how to form relationships. These questions, I think, in light of that, seem you know, this valuation of treatment, which is to living people. Leaving people in the midst of their lives and helps and and ultimately can determine whether you can get a treatment you need or don't get a treatment you need. Just just seems even more removed from reality to me when it when it doesn't acknowledge that, you know, yours are perfect health is is ephemeral. It it just doesn't exist in the real world.
Katie StollYeah, you don't really have that choice. I I think that um the Stephanie, your comment about the time trade-off being like, would you rather I do want to acknowledge, and and I've seen this um, you know, as a kind of explanation for why that time trade-off calculation fits well in the prenatal context. We do go through these types of trade-off exercises all the time and talking with people about, you know, whether to undergo a genetic test or, you know, what the options are with, you know, next steps in terms of treatment or screening or whatnot. Um and I think on an individual level, you can see that that can make sense. You know, I mean, somehow saying, okay, you have a choice to do this test or not to do this test or to take this treatment or not to take this treatment. And these are the different possible outcomes depending on which path you take and understanding that. Um, but even, you know, and I think something we struggle with in these genetic counseling conversations of presenting these different potential pathways to patients is that you still people still have to understand what they're making a choice about, right? And then that in terms of prenatal testing, we talk about a lot. Like, do people really even understand what it is that we're asking them to test for? And and how do you convey that in um in any amount of time? I think the quality is like a bigger issue here is that it's it's extending to a whole population, right? These the the assessment of the would you rather in these scenarios, it's what's determining public health decisions and whether or not insurance is gonna cover a certain treatment or test. It's I guess the assessment of some people to kind of determine what anybody has access to, which is a real challenge and a concern. Sylvian, I think um Stephanie, too. I'm curious if you guys have thoughts about ways that might be more ethical to determine the the usefulness or not of treatments or tests, you know, that would not be so ableist at the core.
I that is a difficult question. I mean, once you've decided that there needs to be some kind of an attempt at being objective, you know, about what you what you cover, what insurers cover and and what is available. Uh it it is really challenging. I I don't think that there has been one like, oh, the solution. We should use X method. As far as I know, there hasn't been one. There have been attempts to vary or change the quality measure. Um, one such attempt tries to to sort of get rid of the quality of life. So then you adjust our component of it, which which relieves the bias part of the ablist bias, but unfortunately also works against people with disabilities in that you're always going to privilege cures because you know you extend life years a lot, and you don't really consider you know a medication that may give higher quality of life, uh less pain, more options to someone who's already disabled, right? That that that would always be kind of falling down if you just disregard quality of life entirely. But it might be that you you just have to take a number of factors uh together, maybe components of different tests and consider them. And that and then the ultimate valuation that you achieve at, if you're really going to try to get a number, has to include the the experiences of people who are most directly affected by these treatments, um, by people with disabilities, uh, include the the different viewpoints of bioethicists. Because right now there really isn't a lot of transparency. I I don't know exactly how the number is used by insurers and bypayers. I am fairly certain that they do not have people of lived experience in that mix. So ultimately, this this uh the number or the valuation just sort of comes out there. And and I also think it having a valuation like this really does sort of distract us from figuring out like what is actually going into the pricing of treatments and medications and drugs anyway, who that that seem to sort of go go through the roof at times. And then, you know, this is our system of patents, how how the world pharmaceutical companies figure out who gets what and what they research and and uh what they're actually looking for. I think all of that is not known to most of us as something of a black box. And now we have even a mix here in in, let's say, in this country, a research dollars going to that are, I think, heavily influenced by political considerations and not necessarily on even a scientific basis or medical basis. So the mix right now in the in the world is has many threads to figure out. The use of the quality is problematic and is not a clean way to figure out that thread, to figure the thread of pricing and coverage.
I mean, I know that in the in the NCD report, some of the recommendations were to actually fund research to determine better cost effectiveness measures, which is really difficult in the current climate, but that was one of the recommendations. And also that the Department of Justice and Office of Civil Rights apply the Americans with Disabilities Act to the funding practices of Medicaid and Medicare in states. And that um and also Section 504. So that would give people, you know, that consideration. I think also including people with disabilities, so if you're going to do the research on that, that it's not just driven by the researchers, but that there is um that's patient-centered research that involves them from the outset. Now, I also think uh it's important, it is important to consider cost with certain things, obviously. Like if you have, you know, it's gonna cost $20 million to treat one person and it's only gonna increase their life expectancy by five years, where you could spend $20 million and increase the life expectancy of 500 people for for that same five years, then yeah, you know, it it's it's is it gonna help more people? Is it going to, you know, what is the cost? Those are considerations, and I I don't discount that because we don't have infinite resources, but I do think that we could devise a better way and a way that includes people at the who are who are supposed to be the targets of treatments um in in those decisions and people with lived experience. So so I guess I would say that would that would be what I hope happens. And also that we do f we do have any entities following those those federal laws. Um and I kind of want to go back and I do want to ask a question. Um so as we're looking at all of that, so in addition to the bias conveyed by the QALYs themselves and by the use of them, how have we seen that they can lead to discriminatory practices in healthcare? And why are people with disabilities and chronic illnesses so disproportionately harmed in that approach? Thanks, Stephanie. That's a really interesting question.
I think that there is that when we're getting at the idea of of value and limited resources, our as a society, our sense of what do we mean by the value of human life is something that that we have to think a lot about. It's funny, the reports came out in 2019, the NCD bioethics reports came out in 2019, and in 2020 we had this huge, like literal earth-shaking event of COVID-19 and the pandemic, um, which also starkly raised for this country and all countries the idea of limited resources and the value of life. Um and in that in that calculus for people with disabilities, we also very clearly and starkly saw how people with disabilities and older people um were often deeply devalued. Uh, the this sense that we're in crisis mode, the different states that had crisis standards of care, those those crisis standards of care sprang into action, even though some of them were decades old and based on very old research. Um and and then we see uh hospitals uh being directed or adopting on their own uh guidance about the use of their limited resources, who gets beds in the hospital, who is admitted, who gets respirators, who gets um uh the care from doctors who are also getting sick uh and uh not able to come into work sometimes. Um so beds and people and equipment are all scarce. Who gets it? Who gets these things? And there was this some some very you see these reactions of well, young people, people who are perfectly healthy, judged to be perfectly healthy, and people who are already thought to have fewer years to live because they have a disability, or have a lower quality of life because they have a disability, or older. Some were just not admitted. You know, they're just not it's not enough room, not enough. Um, they weren't given um the the best treatments or the most aggressive treatments. Uh if they weren't responsive immediately, maybe because they had a disability. You had evaluations of the of the of how um how ill someone was, and often you know, um that would look at things like one of the things one of the dimensions assessed was like tracking of eye movement, how conscious someone is. Well, someone who's blind is not going to be tracking tracking your movements very well. There there was very little consideration of both the impact of disability, of accommodation needs, and very little consideration of the fact that the medical profession really is not good at evaluating how how many years someone has, um, their morbidity, their their you you only have some general numbers. You don't have individualized assessments, and yet you have individuals at a hospital needing care. And how you choose among these people was a matter of often how you value life. Are people equally valuable? And uh the answer seemed to be often no. Um so that that was a a stark lesson for us that unfortunately I think only lasted for a few years. That that's my assessment right now, but I'm in a particularly uh dark frame of mind these days. So maybe I I should let that go. Um I I'd love to hear from both of you.
Stephanie MeredithYeah, so I was during all of that, I was working at the Center for Dignity and Healthcare for People with Disabilities. That was a project that started in 2019, and then when COVID hit in 20, and our focus at that point was improving um access access and the treatment of people with disabilities in I think our areas were prenatal, organ transplant, and end of life. Um, and then COVID got added as one of our components. And there was the famous case of Michael Hickson in Texas where he was denied care based on the clinician's perception of quality of life for him as a man who had paralysis. So I think, and and he ended up passing based on that. I mean, these were these are dire circumstances. I think one glimmer of hope I had in that was that the Office of Civil Rights did end up intervening and really issuing guidance for those states to change their crisis standards of care. And also intervening where, for example, people people with disabilities were being denied support providers as an accommodation in the hospitals when there were limitations on visitors, because that's not of just a visitor, that is a person who is facilitating care and communication and and so many other things. So I guess if I were to say trying to give a glimmer of hope in all of this is that in those cases, people did end up, you know, citing Americans with Disabilities Act in Section 504, and that OCR did contact the states to to push those changes. But it happened not in time for Michael Hickson, right? And and that's the problem, is that we need to be proactive and not just reactive in the way that we construct these guidelines because otherwise you end up not doing anything until terrible things have happened. And so I guess that's one of the things you know, what as far as you know what families and and clinicians can do when they are denied care on the basis of c basis of cost effectiveness. I mean, I think there is legal action, there is also social action. Um people with Down syndrome, for example, were being left out of Alzheimer's research studies, and there ended up being a huge social media and policy campaign to s Center for You know Medicaid Services saying that that that wasn't that wasn't right, that wasn't fair, and and and opening it up when they had the the call for responses to that. So I I I think some of that civil disobedience stuff is sometimes what you have to do too. But other thoughts about what families or clinicians can do when coverage is denied on that basis of cost effectiveness. Oh, and the media.
I when I guess I would just as some of our other conversations around kind of resurgence of eugenics ideology and I mean the current client like I don't know, Sylvia, as you've m mentioned that that greater awareness was on in and discussion around these issues was was brief a few years with with around the COVID time. I do worry that we're increasingly in a time where eugenics ideas are becoming more pronounced, more open. This idea that um resources are scarce and we need to be able to um figure out who's worthy of healthcare and other resources is a big concern right now and and something that might be kind of changing the focus and the dialogue is is that too not a good reason, a good reason to really look at these policies, but I think a big concern that there's there's a lot we're working against right now with these bigger forces going on.
Stephanie MeredithWell, and do people are people do people become even more reticent to spend resources on those who they perceive as optional, right? Like if if you're uh as people are continuing with these, you know, reproductive technologies and crafting who is born, who is not born, um embryo screening, does it make people less likely to want to spend those resources on those who they consider people who are optional, which is very sad for me given that I believe that that people with disabilities are an important part of the fabric of our society.
Sylvia YeeAbsolutely. I I think on the the sort of broader I mean there is there is a lot, someone in the US right now to distract us. Many, many things, and in and in the world as well, even if you're not US centric focused. There are many, many things. And they cut in different ways, right? And in some ways, I think the the world we're in um really does point out perfect health doesn't guarantee anything, right? Um we've we've seen violence affecting lots of different people, and we've seen deep rifts and opinions. You have you have people in powerful positions in Congress, lawmakers in states and in that that seem b uh befuddled or almost seem willing to be powerless, right? There there's there's just a a lot going on. But I do think a fundamental thing we really need to address is this division. This I mean, there's so much division, but a division of like us and them, and people with disabilities are them, and we can we can find ways, you know. Do we want to spend resources on them? Are there can we not improve ourselves and be better, you know, if we're if we have perfect people, we'll have a perfect society. I I mean it seems very, very, very clear to me that a perfect society is not even remotely within reach, and and perfect people are far, far away. Physical perfection is what? What exactly? Right? Uh so it that that is all strange, but this this kind of valuing of of people and higher values are attached to those who are more perfect seems to have been around an idea that has been around, you know, as far as human beings have been around in in many ways. But as long as we keep giving countenance to that idea, thinking that somehow by achieving perfection and individuals will achieve social perfection, we we are going to keep running into these false valuations and these temptations to keep on like spend less on them so that they won't drag the rest of us behind. Right? Where when the reality is that any every one of us is imperfect. Even and even if somehow you're born perfect, you can still become imperfect. And that the the compassion that we can give to one another is also central to our humanity. I don't know how else to that that idea is so lost in in our world right now. And I I like something like the quality doesn't does seems to totally lack that kind of sense of human value and compassion for one another, even accepting that we don't have infinite resources, and I I do accept that, and that we have to make some choices, there has to be a way to bring the best of us to making that decision, and not the worst of us.
Stephanie MeredithI think that's so meaningful and powerful, Sylvia, because I think perfection is so often portrayed as healthy, smart, beautiful. When in reality, in my own life, what I really value is generosity, compassion, kindness, and those don't measure on those other scales. And and in fact, a lot of times the challenges, the challenges we face in life lead to a greater development of those attributes that I value. And so I do think there is substantial concern that we are allowing a societal view of of what whatever is defined as perfection to lead the way instead of what we deeply know to be true about about how we as humans interact with each other and value each other. So so I r I just really appreciate your take on that. Yeah, me too.
Katie StollHopefully, our compassion and care for one another can lead the way to a better path than QALYs. Stephanie, one question asking, and maybe this can kind of lead into our advocacy calls for action, but as far as what people can do, what on a personal note when cost effectiveness is um used as a denial for care or services, I think um I'm I'm curious how you would respond to this too. But I think, you know, calling on advocacy, working with providers like um your genetic counselor to help kind of advocate for you in that way, I think is important. Um, but I'm I'm curious to know how you would respond to that.
Stephanie MeredithYou know, I was talking about, you know, legal action, the law. There's also the the policy action. But I think it's also finding the people who you can build coalitions with. 'Cause I think that's where the real power is because I don't think we're as alone as we f as we feel we are sometimes in these. I mean, I uh you know, we had we have this alliance uh focused on disability justice and reproductive genetics, right? And there's a whole community of people who care about that. And they are smart and they are resilient and they are, and I mean smart in how they know how to solve these kinds of problems, you know, not just that intelligence quotient, but being able to navigate the world and help having us help each other to navigate some of these challenges. So I think it's calling on your people and figuring out who your people are, because it might be the medical professionals in your life, it might be the advocacy or disability advocacy organization, it might be your good friend who has, you know, in my case, uh, you know, a good friend in my state who's built built a listserv. And when we've seen policy things that we need to act on, I write the copy, Heidi sends it out to her list of people, and we rally the, you know, rally our friends and neighbors to to advocate alongside us. So, and and I've also been in the extremely fortunate position of meeting some of the best profession medical professionals and bioethicists in the country who really care about this stuff and who want to who want to work alongside each other. So to me, that that's what gives me hope. And I know we usually we do our shout-out gratitude at the end, but that's who I'm truly grateful for is the people who are willing to work on these really hard societal problems and see the long arc of of getting it done and and the progress that can be made over time. And also who can really come to bat for how we can really come to bat for each other when it is those critical moments like it was with COVID.
Katie StollYeah, I would say share that gratitude as well. I think um I am really I'm thankful for the um National Council on Disability for investing the time and resources into these incredible reports that I think haven't received enough attention through the years. Um I'm thankful, Sylvia, for you being here and for all of the work you do for disability rights and for taking time to talk with us today.
Stephanie MeredithI feel the exact same way, and I'm so glad that you both are have been mentors and guides for me over the years uh as I've learned about these issues, because a lot of this work is what inspired me to go back to school and to, you know, finish my dissertation and do all those things. And I guess the other thing I will give gratitude for is the students, because I also get to work with students who then get energized about these issues and they want to go out and work on them too. And and so I think I think we're sometimes not as alone as we as we feel like sometimes. And and I and I'm just very grateful for all of the people who care and are moving it forward. So so thank you.
Sylvia YeeThank you so much for having me on. I I deeply appreciate um you're giving me this opportunity. Uh the shout-out I I I do have a shout-out, and it's actually to you know my my colleagues and others, sort of disability rights ancestors, I guess, who recognize the need for binding civil rights laws connected to disability. You know, as as a lawyer, I recognize the deficiencies of bringing a lawsuit, how much time it takes, the the effort. Um, but the finding the lawyers who will work often for years without pay because they're thinking that you know uh th their their pay might be at the end if they win. Right, that's how the civil rights laws work. But I sort of c having these tools, it's really, really hard to change views about disability. And it it it takes all our relationships, it takes all the policies we try to make, it takes um like being out on the streets, having friends, having you know uh raising your children in the in in the world, right? And that can be hard because the world can be really meat to children with disabilities, right? Um so all of that, and and and there still has to be some kind of a club, I guess is what I'll say. And the club is the appeals um of of system uh the pharmaceutical or drug insurance appeals, and they're really hard too. I I know they're incredibly hard. Um, you're trying to discover you're looking at tons and tons of documents, looking for something that tells you why this thing happened and something that's unfair, right? Um legally unfair, not just unfair in a sense of of um morally unfair. So all of these things are hard, but we really do need that tool. And for the people who developed the the the the laws and who put them out into the world, this is before the internet, before AI, before the dominance of uh corporate and private equity in um so much of our healthcare system. Did they know that that these tools might be useful, would be useful? Maybe not, but it's for us to use them now as part of our arsenal to make sure the world knows the value and the rights of people with disabilities. So that's just a shout-out I wanted to make.
Stephanie MeredithWell, thank you so much for joining us today. And we will go ahead and sign off and thank everyone for listening and invite all our listeners to give comments and to join us for our next podcast. Thanks. Thank you.