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Each week, Health Affairs' Rob Lott brings you in-depth conversations with leading researchers and influencers shaping the big ideas in health policy and the health care industry.
A Health Podyssey goes beyond the pages of the health policy journal Health Affairs to tell stories behind the research and share policy implications. Learn how academics and economists frame their research questions and journey to the intersection of health, health care, and policy. Health policy nerds rejoice! This podcast is for you.
The Social Security Disability Insurance Program, SSDI, plays a critical role in the nation's safety net, offering support in the form of a cash benefit to workers who become unable to work due to disability. In 2024, seven point two million disabled workers received more than $11,000,000,000 in monthly SSDI cash benefits. The program is rooted in the basic idea that long term disability shouldn't push people into poverty, that dignity and stability are fundamental even when work is no longer feasible. And that's the same philosophy that led Congress in 1972 to make Medicare available to those same millions of individuals on disability. After all, people who met the definition of disability often faced serious ongoing medical needs and were unlikely to obtain affordable private insurance.
Rob Lott:But that expansion came with a significant limit. That is, it established a two year waiting period before people on disability could enroll in Medicare. And that's not a small chunk of time. It raises an important question. What does that waiting period mean for the health and well-being of those who must endure it?
Rob Lott:That's the question for our Humble podcast today. I'm here with Doctor. David Powell, an associate professor of medical ethics and health policy at the University of Pennsylvania's Perelman School of Medicine. Along with coauthors, he has a new article in the March issue of Health Affairs. Its title is also one of its main findings.
Rob Lott:Quote, SSDI beneficiaries had elevated mortality during the two year waiting period for Medicare from 2000 to 2019. This is a good one, and I cannot wait to dig into it further. Doctor David Powell, welcome to A Health Podyssey.
David Powell:Thanks so much for having me.
Rob Lott:One quick programming note before we start. I just wanna let our listeners know that we are now recording, both audio and video of these podcasts. So in addition to your usual podcast platform, you can also check us out on Health Affairs YouTube channel. Check it out and, let us know what you think. All right.
Rob Lott:Doctor Powell, let's start with some background. As I mentioned in the introduction, in 1972, policymakers created this two year waiting period for people on disability to become eligible for Medicare. What were they thinking?
David Powell:Yeah, so the short answer is just that they were worried about cost. So this is just a kind of a simple way to reduce the cost of the program. So for context, the Medicare program at this point was itself. So Medicare started in 1965. Policymakers were already at this point concerned about that the cost of Medicare were actually higher than anticipated even at the time.
David Powell:So there was just a lot of worry about now adding this an entirely new population onto the onto the into the Medicare system. At the time, you know, there wasn't really even a good way to estimate or even guess, like, what that population would cost. And so the Social Security amendments of 1972, what it was actually really popular. It passed almost unanimously. So it's not really clear that the waiting period was necessary for it to pass, but it was just kind of a conservative way to address, like, these potential costs because they didn't know what those costs were gonna be, they wanted to keep those costs down.
David Powell:So that was kind of the primary motivation of doing it. The the other motivation, which is really a complementary motivation, was that there was this worry that some people with receiving disability benefits did already have private health insurance coverage. Now I don't think they would have had any idea what that rate would have been, and it probably would have been pretty low because this was before COBRA even. So, like, you have people who aren't working, Like, COBRA doesn't exist till 1985. So it was probably pretty low, but the the the logic back then was that if you have people already covered by private health insurance, you're now shifting those costs into the public system, into the federal deficit basically, without much gain.
David Powell:So they already have health insurance and now just the federal government is paying for it. And so they really didn't want to do that, and so that was kind of one of the motivations was, we're gonna be paying this high cost and some of those costs are gonna be kind of unnecessary costs. They're not gonna have any benefits attached to them. So just kind of segues into why we still have a waiting period and and the reason really hasn't changed. Right?
David Powell:There's this concern of just that this is a cost saving measure. You can kind of decide whether or you think it's a good one. But, any way to, like, rectify or, you know, reduce the waiting period would actually, increase costs.
Rob Lott:Right. The CBO score, if we had, like, a standalone bill today that said, you know, we're gonna get get rid of the, the waiting period, that would be a pretty big bill basically for the federal government at the end of the day. Right?
David Powell:That's right. Yeah. It looked very costly. So we haven't had a CBO estimate of this for a long time. We haven't had a bill scored that would do this.
David Powell:The most recent one was actually this 2008 report, which, said that over the next ten years at the time, if you if we got rid of the waiting period in for SSDI beneficiaries, that it would increase the federal deficit by a $110,000,000,000. So, you know, that was under in a very different landscape, you know, health insurance landscape. That's before the ACA really. They they weren't really accounting for the ACA at that point. So, it's definitely something which you you know, we would hope to get kind of more contemporary estimates for.
Rob Lott:Great. Well, now before we talk about your study, I wonder if you can reflect a little bit on what we know about the impact of that waiting period on beneficiaries themselves, on their access to care, their costs, and ultimately their health.
David Powell:Yeah. So there's this kind of small literature on, you know, what I'll kinda describe as just, like, trying to describe what the light what life is like during the waiting period using kind of some using quantitative and qualitative methods. But one of the things I kinda wanna highlight about this literature is that it's pretty old. And and so, like, they're, like, very they're well done studies. They were, you know, very informative at the time.
David Powell:But, like, one of the motivations of this study was just we just needed updated numbers, and I'll kind of highlight that as I kind of just discuss what we what we know. But yeah, is this old literature that we just kind of covers lots of outcomes. So for one, there's a 2004 study which just documents that it is a group that has a relatively high uninsurance rate. So an estimated about twenty six percent of of SSDI beneficiaries during the waiting period don't have, health insurance. But again, wanna highlight, was using data from 1995 to 1997.
David Powell:And then there's some good qualitative research from 2004, which found that people, during the waiting period, they, report delaying care and skipping medications, because they don't have access to care. There's a more recent paper, a 2015 paper using data from the early 2000s, which found that this population has higher out of pocket medical expenses, as you might guess. And then there was a 2010 paper, which again is using the 1995 to 1997 data, finding that this population, does report lots of unmet health care needs and health care access problems in general. So then what our study kind of built our study is interested in mortality, and there are kind of two studies which have looked at mortality before ours. One is this nice, 2004 study, which again is using looking at new beneficiaries in 1995.
David Powell:And there's a related, 2010 study, is again looking at beneficiaries from 1994 to 1996 and then linking them to mortality records through, 2002. And they find really high mortality rates of, you know, twelve to thirteen percent. But I just kinda wanna highlight again that, you know, the it's just old data. You know, there's something you know, the the really good studies, but we just kinda need more. We just we were kinda motivated by the idea we need more contemporary numbers.
David Powell:And then I guess the most, like, causal evidence we know is that there was this, demonstration project called the accelerated benefits program, which operated through from 2006 to 2011, which, so what that did is it enrolled about 2,000 new beneficiaries in 2006. And it randomly provided health insurance to, a subset of them, and then it compared the treated groups and the controlled groups. And they did find that there was, you know, an increase in health care utilization, a decline in self reported unmet medical needs and prescription drug fills, and general improvements of health. So self reported health improved and then some more objective measures of health improved as well. They actually didn't find mortality effects that could part partially be because they probably weren't powered to do so.
David Powell:So even though mortality is high for this population from a statistical point of view, it's still a rare event and, you're you know, even 2,000 people would probably mean it was underpowered. So but they didn't find any mortality effects. So that's kind of generally what we knew about the program. And I'll just kind of highlight again, a lot of this data comes from the 1990s and the early 2000s.
Rob Lott:That's wild. You think about 1996 was thirty years ago. That's basically half the life of the Medicare program, essentially. So it just feels like such ancient history, which brings us to your study. I'm glad, you guys have stepped up to kind of fill that gap.
Rob Lott:As you said, you looked at mortality rates during that twenty four month period compared it to the general population. Give us some of your top line findings.
David Powell:Right. So this is a I wanna point out. This is joint work with, Seth Hardig at the Social Security Administration and me, Ray Jacobson, at the University of Southern California. And so we studied, two year mortality rates from for new beneficiaries who start who became new beneficiaries in 2000 to 2019. And so we find in 2000, the the mortality rate of this population, the twenty four month mortality rate was seven point three percent.
David Powell:That declines for several years until 2011 hits about a little over five percent, then actually starts increasing until 2019 hits six percent. So I'm just gonna kind of focus on the six percent number. You know, that's a very high mortality rate for, you know, for a a two year period. We just to benchmark that, we compare that to the general population, and, you know, the general population has much lower mortality rates. One thought we had was that, you you know, they are very different age distributions.
David Powell:So we looked at the 18 to 62, age group. But even within that age group, the SCCI population tends to be older.
Rob Lott:Or just to get 62 then to 18.
David Powell:Exactly. So we age adjusted the national rates so it matched the SSDI beneficiary, age distribution. And, you know, we basically find that the national mortality age adjusted mortality rate is a little bit over one percent. And, at any point in time, the, SSDI, mortality rate is about five to six times the the magnitude of the national population. So it's not like it's not shocking that this is a population with a high mortality rate.
David Powell:I mean, one of the ways you can get on SSDI is that you have an impairment that is gonna result in death. So we know it's gonna be a high population, but it was just such a striking difference between the with the with the national population, that it's you know, it kinda seems to, you know, merit some attention. So then we went a step further and we, we looked at the condition specific mortality. And our motivation for this was that, you know, the waiting period we've had the waiting period, as you said, since 1972. There's been some appetite for reducing the waiting period for specific conditions.
David Powell:So, you know, initially in 1972, they carved out end stage renal disease. And in 2000, they carved out, people with ALS. And, and the logic behind those carve outs was that the mortality the two year mortality rate of of those conditions was so high that they wouldn't even they would never get to Medicare. So they should just they should get a Medicare when they first become eligible for the program. And so, you know, part of our motivation here was to think about, you know, are there conditions which kind of meet that same criteria now?
David Powell:And so we use these kind of available, like, aggregated, impairment categories. And kind of the most striking one was we find that, you know, people with disabilities where the primary impairment is cancer have a two year mortality rate of thirty nine point three percent, which is just, you know, extraordinarily high. They're not the only ones with know, that's that's way above any other condition, but we still find other conditions with very high rates. So, impairments of the digestive system, which would be things like chronic liver disease and hepatitis, they have mortality rates over eleven percent. Blood related diseases like sickle cell disease, they have mortality rates over eight percent.
David Powell:At the other end of the spectrum, we we looked at, you know, intellectual disabilities. They have very actually very low mortality rates, so point four percent. So the mortality rate of people with of people with cancer that are in the SSDI program during those two years is a 100 times the rate of the lowest. So there is a lot of heterogeneity here, which just suggests some scope for, you know, targeting specific conditions. As we at these aggregate categories, you could dive further into those categories and probably find conditions which are well above 39% of them.
David Powell:We also, we divided those categories and we aggregated them more into kind of what we call systemic diseases, functional impairments, and intellectual disabilities. And it's really the systemic diseases, which just have extraordinarily high mortality rates, while the others have much, much lower. The final thing we did in the paper was, as I, you know, talked about in the beginning, you know, there has been this rise in mortality rates among the SCDI population during the during the waiting period since 2011. And so we're interested in kind of, are there any simple explanations for why? And so what we did is we, held the composition based on impairments and age constant from its 2,000 rate, from from the 2,000 structure of, beneficiaries.
David Powell:And we looked at what the mortality rate would look like if the composition hadn't changed. And there you see that then the mortality rate has just been declining from from 2000, 2019. You see pretty much a steady decline. So that suggests that the increase since 2011 is purely a compositional effect. It's because the types of impairments that are, you know, coming into the system are different.
David Powell:And so and you there are lots of reasons you could potentially think about why that would be happening, just changes in the the labor market are affecting who can engage in substantial gainful activity. But we kind of guess one hypothesis in the paper is, you know, we've had this there's this compassionate allowances program now, which effectively for specific conditions tries to speed up the decision process to get people onto the system. And so you can kind of imagine that some people who would have died before they got into the system are now being counted as deaths in in the system. So it could just be a compositional effect, but it's definitely something that I think is kind of worth looking into about, like, why the composition is changing in a way that is increasing mortality.
Rob Lott:Wow. A lot of, really interesting findings there. I want to ask you a little more about the context for those findings, but first, let's take a quick break. And we're back. I'm here with the University of Pennsylvania's doctor David Powell, and we're talking about his recent research paper looking at mortality trends for people on disability during the two year, waiting period before they can sign up for Medicare.
Rob Lott:You hinted a little bit at this, the sort of cause and effect implications of your finding. And I'm curious, is it basically as simple as these patients were already vulnerable? So of course the mortality rate is going to be higher. Or do you have a sense of if maybe there is a feedback loop here where the lack of Medicare coverage is perhaps exacerbating the mortality risk for this population?
David Powell:Right. So that's kind of the important question. And, we think of our paper as purely descriptive. We think this is a vulnerable population, and it's really important to establish its vulnerability. Not so and we focus on mortality, but like kind of a motivation of this work is to think about, you know, mortality is also, you know, it's an important outcome on its own of course, but it's also a proxy for lots of other just, you know, health problems, you know, the financial risk associated with death.
David Powell:So, know, we kind of we know that before people die, they just they accumulate a lot of medical costs. And I don't mention that because medical costs are like really important, but when we're thinking about health insurance, you know, health insurance is actually really good at mitigating healthcare cost. That's kind of the main purpose of health insurance. That was kind of the motivation of the study is to establish the vulnerability of the population. It is an interesting question to think about, you know, whether, you know, reducing the waiting period or eliminating the waiting period would help the health of this population.
David Powell:You know, there's some evidence again that it would. I don't think it would do it to, you know, to an extent, that would completely eliminate these types of disparities. But there is evidence that health insurance does improve health and reduce mortality. And specifically, have some evidence that Medicare is really good for the age 65 population. When people age on the Medicare, lower mortality rates for, non deferrable conditions.
David Powell:And then, you know, there's recent work, showing that, you know, states that, you know, expanded Medicaid, you know, saw improved mortality relative to states that didn't expand Medicaid. And then kind of most relevant to this work is, you know, there is this paper by, Martin Anderson in 2018, which found that that carve out of the end stage renal disease, actually, we you saw mortality benefits to that group specifically, when they suddenly got Medicare access in 1972 relative to other people with disabilities. So none of those speak directly to this population, but they kind of suggest that there might be some, some mortality gain. So I think there is some scope potentially for Medicare to do it. But, you know, again, I don't think it would could explain the, you know, the the enormous mortality disparities that we're observing.
Rob Lott:The disparity. Yeah. The introduction to your study, you sort of put your research in the context of legislation that was introduced last year to potentially waive the waiting period for certain beneficiaries. And I'm curious, is that sort of the obvious policy solution to these disparities? You know, as you just said, it's not gonna be night and day and and and solve every problem.
Rob Lott:But is that, perhaps the most promising policy intervention? Are there other approaches that policymakers might consider?
David Powell:Right. So I think if your goal is to improve the well-being of people on the SSDI program during the waiting period, I think it has to operate through health insurance. Because, again, you know, we are documenting high mortality rates and we think that there's evidence now that health insurance does improve health and again, thinking about mortality as a proxy for this other, you know, terrible outcomes in your life especially the the cost. You know, and and just the financial risk. You know, health insurance is really good at alleviating the financial risk of high health care costs.
David Powell:So I don't think it's gonna solve these problems, but it's it's definitely going to reduce them. It's just the question is, you know, in terms of policy is how are we going how would we if that's our goal, if our goal is to improve the lives of that group, how are we gonna cover them with health insurance? So we could, you know, cobble together a system of a difference of using other health insurance mechanisms to cover them. So for example, that's kind of what COBRA does. So COBRA, can be extended to up to twenty nine months for people with disabilities specifically because that covers the five month cash benefit waiting period of Medicare and then the twenty four month, Medicare waiting period.
David Powell:So we've kind of already tried that with COBRA. The big barrier to all this, of course, is cost. And I always think about this, and they're kind of like three buckets of people in the system, people with disabilities during the waiting period. The one is just a is a group that are instead of Medicare, they're being covered by other forms of public insurance like like Medicaid. And so and and for that, I you know, shifting them over to Medicare is just it's mainly just an offset to the tax the taxpayer.
David Powell:I mean, of that some of that is being covered by Medicaid and that's, you know, a lot of state payments, but to the average taxpayer, they probably wouldn't notice.
Rob Lott:So one public system to the other.
David Powell:Yeah. It's going yeah. It's basically the same cost to the taxpayer. There's another group that is being covered by private insurance, that's COBRA or spousal coverage. And I would say for that group, we're still covering them, right?
David Powell:Because health insurance companies are trying to recoup the expected cost of medical care. If we have, you know, people with disabilities that are sort of being on Medicare, they're being put in the private system, premiums are going to be higher because of that. So I think, again, the average taxpayer is still paying that. So the only the group that really matters here is the group that's not being insured. And we have to decide if, you know, the benefits to the benefits of covering that group are worth the cost.
David Powell:And so we could, you know, couple together a system, to do that or, you know, we could use Medicare. And so, you know, and so, you know, it kinda comes down to just like, you know, we have to use health insurance in some way and kind of how do we want to do it. And so one way of thinking about it is just we have a system that is designed to cover people with disabilities and it's not covering people with disabilities. So it's already designed for that purpose. We could just use it.
David Powell:But we have to decide whether we think the benefits of that are worth the cost.
Rob Lott:Great. Well, the ultimate question for our policymakers, are the benefits worth the cost? Doctor. David Powell, thanks so much for taking the time to talk with us today about your fascinating paper, and really appreciate you being here.
David Powell:Alright. Thank you so much. I appreciate it.
Rob Lott:To our listeners, thanks for tuning in. If you enjoyed this episode, please subscribe, recommend it to a friend, leave a review, and, of course, tune in next week. Thanks, everyone.