How to Help People with Kidney Disease Keep Their Jobs
For 16 years, with Amgen support, the non-profit Medical Education Institute (MEI) which created Home Dialysis Central, ran the Life Options Rehabilitation Program to help people with kidney disease live long and live well. A key aspect of that program—but never the only focus—was helping people to maintain employment, because work can boost self-esteem, offer social contacts, and provide an income and perhaps benefits, and all of these help mitigate the emotional and financial and even physical impact of a chronic illness.
Recently, it has been suggested that the degree to which dialysis clinics help their clients keep their jobs should be a metric used to judge the quality of the care they deliver. You would think that with a 16-year track record of advocating for employment (along with encouragement, education, exercise, and evaluation, the original “5 E’s” of renal rehabilitation) MEI would strongly support this notion. But, we don’t support it unconditionally. Because, by the time people reach end-stage and start on dialysis, it is far too late to start worrying about their jobs. That concern needs to happen upstream during CKD and then continue into ESRD.
To help the kidney community understand how difficult it can be to return to work, I asked members of our Facebook discussion group to describe the challenges. Their responses illustrate the complexities of a system that is not set up to help people stay active and productive—even though helping citizens to do just that was precisely the promise made by Senator Vance Hartke that got Medicare extended to pay for the ESRD program (dialysis and transplant) in 1972. The emphasis below in bold is mine:
- I would love to return to my job, but I can't. With my employer, once you go out on Long Term Disability, your position is gone. You have to re-apply and go in at the entry level position. They're required to take you before others that apply off the street, but it's literally like going into a new job. I'd lose my long-term disability benefits (which means no more health insurance), and I'd be without health insurance for 90 days due to the hiring process. I can't get health insurance through the exchange because I have Medicare. So even if I could find a clinic in my (insurance) network that lets you do nocturnal (which I would need to do my job), it wouldn't be worth it, as I'd be paying off my health care for the rest of my life for those 3 months.
- For my long-term disability, I have to be reviewed yearly. They check to see if I have taken any classes, or working other places, etc. It's an automatic removal of my LTD benefits - which for me, is my health insurance. Yes, I have Medicare, but it doesn't cover everything and my prescriptions are through my employer insurance.
- I am now 5 weeks out from a non-related living donor transplant. But in my experience I work for a small employer (under 40 employees) and when I started dialysis I was a supervisor. I have since been demoted twice due to a request to modify my hours so I could work from 7-3:30 so I could come home and dialyze right away and get to bed by 9. (NOTE: Not making this kind of accommodation is against the law—the Americans with Disabilities Act, or ADA). It will be interesting when I go back after this surgery. It's difficult to work at a small employer when you have a chronic illness.
- My hubby worked while on dialysis for 10 years while paying into long-term disability. If he was able to work any hours at all right now he would lose that income. He could lose it just by participating in vocational rehabilitation.
- I could not survive on my SSDI alone. If I lost my long-term disability benefits, I would be homeless!
- I searched the local voc rehab job finder database and there was only menial labor jobs listed. My fear is that dialysis centers will see employment as a revenue stream and not focus on what is best for the patient. The dialysis centers can push people to go back to work so that they would receive private insurance. Private insurance pays more than Medicare…
- Dialyzors are in a world of our own. Unlike those with permanent or development disabilities (like Downs, deformities, and the like) ours is a progressive disease, where one day we may feel great, the next in the toilet. We are subject to emergency hospitalizations and infections. It makes it very hard to consider viable employment, and then you have to fight employers who are resistant and uncooperative. It is truly easier not to work, and for those that have managed to do so, I applaud you. For those that want to, I empathize, and for those that can't. I get it!! No one should be judged by where they are in this continuum!
- I don't think my mind is quick enough or thorough enough to put the care of patients at risk.
- I think the biggest hurdle for me is getting time off work to get to monthly clinic. I mean I could never take a day off with just 2 weeks notice every month and the doctor and team are completely and totally rigid and non-flexible. So, if I did find work it would be near impossible to keep it with the necessary clinic visits. Just saying. (NOTE: The ADA could make a more flexible work schedule possible.)
Perception is reality. Systemic barriers in long-term disability coverage, in particular (not Social Security Disability Insurance (SSDI) or Supplemental Security Income (SSI)), can make the challenges of returning to work nearly insurmountable. The fear that returning to work could risk of loss of income and homelessness or enormous debt is great enough that even people who really want to work are afraid to try. Consumers may not be fully informed about disability insurance policies (public and private), work incentive programs with complex rules, vocational rehabilitation offerings, and legal protections for workers with disabilities, so myths and misperceptions may limit pursuit of employment even among those who do feel able to work. And, currently, the median age of people on dialysis in the U.S. is 60 (down from 65, as younger people become more likely to experience kidney failure). A substantial proportion of U.S. dialyzors are retired due to age, while others don’t want to work: among the general public, only about 2/3 of working-age people are employed. Any sort of metric around employment levels for dialysis patients would need to consider the appropriate denominator.
What makes more sense and has the potential to be far more effective is to support people to keep their jobs as their CKD progresses. Before kidney failure, education about slowing CKD progression is key, followed—if CKD progresses—by information about which treatment options are work-friendly. Use of home therapies and accommodating work in clinic scheduling are obvious strategies to make continued employment more likely, which is why you are reading this post on Home Dialysis Central. An abstract at this month’s NKF Spring Clinical Meetings found dismal employment rates across the board for 156,524 working-age (defined as <60 years old) DaVita patients—just 12.8%. But, the percent of those who worked more than doubled for home dialyzors on both PD (25.1%) and home HD (27.8%).1 A second DaVita abstract identified lack of energy, disability, and a need for retraining as the key barriers to employment.2 Finally, an even larger and longer term analysis by Nie, Bragg-Gresham et al. assessed employment rates by year for 402,679 working-age (21-65) patients who began standard in-center HD between 2005 and 2014. While employment rates held steady at 27-29% between 2005 and 2010, they subsequently decreased to 23% by 2014.3 If I were a gambler, I would bet that reduced hemoglobin levels played a part in that decline…
To address the distressing lack of employment among people with CKD, MEI is partnering with the American Association of Kidney Patients (AAKP) on a new initiative--KidneyWorks. Our aim is to reach out to people who have stage 3 or later CKD—but are not on dialysis or transplanted—and help connect them to the resources, employment rights, and information they need to continue working and keep their health plans.
KidneyWorks is a long-term comprehensive initiative to:
- Investigate barriers to continued employment for people with nondialysis CKD
- Identify strategies to help working age people with CKD slow the disease progression and keep their jobs
- Develop resources and programs to support people with CKD in the workforce
KidneyWorks Phase 1, a stakeholder meeting that will culminate in a white paper, will take place at the Hall of States in Washington D.C. at the end of June, with a cross-disciplinary slate of passionate experts. Outreach to people with nondialysis CKD—a perennial challenge—will be facilitated by AAKPs membership and magazine, and by Life Options, which has morphed over time from a dialysis site to a resource that mainly reaches people with nondialysis CKD and attracts more than 2.7 million unique visitors a year. If YOU are interested in contributing resources or expertise to this effort as it moves forward after the Phase 1 meeting, reach out to me or to Gary Green at AAKP and let us know. KidneyWorks is an idea whose time has come.
- Dunn D, Evans D, Mutell R, Hann C, Benner D. Employment status among end-stage renal disease patients by treatment modality. Abstract and poster presented at the National Kidney Foundation Spring Clinical Meetings, April 27-May 1, 2016, Boston, Massachusetts.↩
- Evans D, Dunn D, Mutell R, Jones E, Benner D. Barriers to employment among end-stage renal disease patients receiving dialysis. Abstract and poster presented at the National Kidney Foundation Spring Clinical Meetings, April 27-May 1, 2016, Boston, Massachusetts.↩
- Nie XY, Bragg-Gresham J, Shahinian V, Saran R. Changes in employment status during six months prior to first chronic hemodialysis (HD), 2005-2014. Abstract and poster presented at the National Kidney Foundation Spring Clinical Meetings, April 27-May 1, 2016, Boston, Massachusetts.
These abstracts and posters from the NKF meeting can be found by typing “employment” into the “text search” field at https://ww3.aievolution.com/nkf1601/index.cfm?do=abs.pubSearchOptions.↩
May 09, 2016 2:26 PM
I would say it’s mostly because of the money (as usual in the U.S.)... and the lack of integrated care. Ironically, the large for-profit dialysis providers are moving aggressively into “integrated care” for multiple chronic illnesses. They are enjoying the increased revenues that come from providing “sick-patient” care. However, their efforts in integrated “well-patient care” rarely extend beyond a web page of basic information.
There is no financial incentive for for-profit dialysis providers to keep patients employed. Providing the necessary coordinated and integrated care, longer dialysis times, and extended medical services hours to keep a large percentage of patients working is more expensive than standard dialysis care. To avoid these additional costs and to give the appearance of doing something constructive, the for-profit providers are more than happy to provide dialysis patient advocacy organizations with financial grants to provide one or two needed well-patient services – usually educational – that the providers will not. Patients, however, find a huge disconnect between the educational materials and their actual experiences with the for-profit dialysis providers. The realities of uncoordinated and unintegrated care, as well as the financial self-interests of the patient advocacy organizations, turn the well-intentioned efforts of these patient advocacy groups into part of the problem. (Home hemodialysis in the U.S. also follows this scenario.)
Increasing patient employment rates requires a coordinated effort of dialysis providers, nephrologist organizations, clinicians, equipment manufacturers and patient advocacy groups, as well as creating numerous legislative and reimbursement changes that foster employment. Until we create very significant financial incentives for the dialysis providers to lead this effort (e.g. extend the MSP period for employed patients), only a few patients will be able to overcome the obstacles of uncoordinated and unintegrated care. For this reason, it makes far more sense for any employed patient facing eventual kidney failure to make every effort to receive a transplant.
Finally, no one has ever said that employment should be the ONLY focus of dialysis care. Employment is, however, the most effective target for driving rapid technology improvements, injecting patient feedback into nearly all care processes, and establishing a well-patient model of care. All have been sorely lacking in U.S. dialysis care.
May 12, 2016 5:49 PM
"There is no financial incentive for for-profit dialysis providers to keep patients employed." That has NEVER been true. It is in the obvious best interests of providers to keep people working, because billing employer group health plans is far more lucrative than just Medicare and Medicaid or Medigap. LDOs bill these plans sometimes 10x or more over what the Medicare rate is. This is why they "donate" money to the AKF to pay folks' health insurance premiums--which has now been extended to COBRA (a policy not approved by the initial decision and one that unfortunately harms patients' employment chances.)
"Ironically, the large for-profit dialysis providers are moving aggressively into “integrated care” for multiple chronic illnesses. They are enjoying the increased revenues that come from providing “sick-patient” care. However, their efforts in integrated “well-patient care” rarely extend beyond a web page of basic information." ABSOLUTELY. you and I are in complete agreement that "integrated" care that only looks at clinical factors and not emotional, social, spiritual, and financial matters is not truly integrated. The dots are so rarely connected. Navigation through a healthcare system is a positive thing, but neglecting to consider patients' values is sadly all too common. This is exactly why we built our "My Life, My Dialysis Choice" decision aid--to help people (who are often NOT told of all of the treatment options) how to make a choice that will let them have full lives that may include working.
"Increasing patient employment rates requires a coordinated effort of dialysis providers, nephrologist organizations, clinicians, equipment manufacturers and patient advocacy groups, as well as creating numerous legislative and reimbursement changes that foster employment. " Absolutely again. Complex challenges require coordinated approaches. We hope that KidneyWorks will be the start of one such approach.
May 13, 2016 11:47 PM
Once a patient begins dialysis, they transition to Medicare after 30 months of private insurance. If patients become unemployed after starting dialysis, they can continue private insurance under COBRA provisions, so employment hardly matters for the for-profit providers.
How can your conference hope to come up with solutions when the basis of the economic problems is so poorly understood?
May 16, 2016 2:38 PM
But, "rehab" programs to get people back to work after they have already given up their jobs would be too little, too late. Ninety percent of US patients do standard in-center HD. Half of them start treatment emergently. Once their jobs are gone, finding a new one with a chronic disease and a treatment that is the polar opposite of work-friendly is like asking the moon. Success is rare and costly. If anything, one hopes that CKD education programs like KidneySmart and TOPS include information about the importance of choosing a work-friendly treatment BEFORE dialysis starts. Because thinking about it afterward is too late for almost everyone.
The inclusion of COBRA in the AKF program is extremely troubling for exactly the reason you point out--"employment hardly matters for the for-profit providers." COBRA was not included in the original GAO decision for the AKF, and using the program for this purpose harms patients.
As far as KidneyWorks, its initial focus is PRE-dialysis. SO, the particular economic challenges of dialysis providers will not apply.
May 17, 2016 3:07 PM
If you only focus on education you will fail to utilize the power of financial incentives and market forces to transform dialysis care. Education will not significantly change the for-profit providers, the technology, the economic value of patient feedback, or the overall model of care.
My fear is that this conference will function as an infomercial and will focus on roles (and revenue streams) for patient advocate organizations like MEI. Organizations such as MEI fill a gap caused by the lack of integrated and coordinated care in the well-patient model that was created by a system of dialysis care that only focused on mortality, hospitalizations … and profits (and access to capital). Unfortunately, in carving out an economic niche that guarantees their survival, I believe groups like MEI now, in many ways, help to perpetuate the mistakes that keep U.S. dialysis care from greatly improving.
May 17, 2016 6:24 PM
After 9 years of working on the Life Options program, hearing Dr. Andreas Pierratos present on home nocturnal HD at the ASN in Toronto in 2000 was a revelation. It WASN'T "Encouragement, Education, Exercise, Employment, and Evaluation" (the so-called 5 E's of renal rehabilitation) that really mattered--it was MORE DIALYSIS. His patients were working, sleeping at night, having babies. We are hitting our heads against a wall if we think that a system of minimal "adequate" dialysis is ever going to lead to increases in employment. People are sick. They are tired. The reimbursement does not support their efforts. Did you read what people on dialysis said about these challenges?
Rehab programs are not what we need. Better and more work-friendly dialysis is, I believe, the ONLY hope for improving the chances that someone whose kidneys fail will have the opportunity and the energy to continue working.
If you have ideas for how to "utilize the power of financial incentives and market forces to transform dialysis care," I know that all of our readers would like to hear them. If, when you say this, you are speaking of incentives for more people to have access to home therapies, then you and I agree. Merely insisting that all working-age people must be working will, on the other hand, create yet more incentives for clinics to cherry pick and will harm patients who don't feel well enough or simply don't WANT to work, regardless of age.
As far as MEI filling a gap caused by a lack of integrated and coordinated care, you may be right. But, I strongly suspect that when I retire these gaps will still be right where they are now, unless we are somehow able to create a single payer system that aligns incentives in favor of healthcare and not just illness care. Meanwhile, I have to disagree that we help perpetuate the mistakes that keep US dialysis care from improving. I believe that by continuing to shine lights on where the system is NOT working, that we have opportunities to help incrementally fix it--since what seemed like the best chance for a single payer healthcare system in my lifetime became the disappointing (IMHO) ACA.
May 18, 2016 2:40 PM
As you know, the need for integrated and coordinated care in patient employment and rehabilitation is clearly pointed out in an early MEI document called Bridging the Barriers. However, your long-term position has been that longer and/or more frequent dialysis treatments “is” rehabilitation. Is there then no need for the integrated and coordinated care of a well-patient model? When do the patients’ priorities, goals, and ideas about their lives come into consideration? If the provider is only offering longer dialysis times and clinic appointments during the patient’s normal working hours, do you think patients would agree with your idea of rehabilitation? If longer dialysis treatments are only available to home patients due to labor costs, should a patient who wants to continue working also be forced to take on the burden of home dialysis?
The biggest problem today is that the for-profit dialysis providers are not delivering the integrated and coordinated care necessary to support the employed-patient subset. They have no financial incentive to do so. A simple solution is to provide them with a financial incentive to increase patient employment. It is even better if this incentive doesn’t cost the government anything. It is time to take advantage of the significant advantages, opportunities, and protections that the Affordable Care Act can provide for dialysis patients.
The biggest financial incentive possible is increasing the Medicare Secondary Payer (MSP) period for employed patients. The MSP period is the source of most of the profits in the dialysis industry. The MSP period is the number of months that a patient is covered by private insurance after starting dialysis, currently 30-33 months, depending on the circumstances. The dialysis providers charge private insurance companies many times the Medicare rate for dialysis treatments. After the MSP period expires, all dialysis patients have their treatment paid for primarily by Medicare at the Medicare rate (approximately $250/treatment).
A way to harness the power of financial incentives and market forces is to increase the MSP period from 30 months to an indefinite period for working dialysis patients. Simply apply this provision to new patients coming into the dialysis care system. The focus is to have the people who want to stay employed after they start dialysis to remain in the workforce for as long as they want. New dialysis patients who feel they cannot work should seek disability status as per usual. Make current dialysis patients who are presently disabled exempt from this change in legislation so they are not forced back to work against their will (or frightened of change). To start, allow employed dialysis patients to buy insurance on the exchanges indefinitely. The dialysis providers and/or AKF can pay for it. Provide a tax break/exemption/special rule for small businesses that provide employee health insurance so patients are not driven out of these jobs. The for-profit dialysis providers currently want to extend the MSP period, but without any conditions attached to attaining it.
With this financial incentive, dialysis providers will become the biggest advocates of dialysis patient employment and will have to adopt a well-patient model of care. The providers will value and seek out patient feedback. Technological changes that make dialysis easier and simpler will be sought after, researched, developed, and quickly adopted. In the end, the for-profit providers will create a system of care that continually and automatically works to improve medical outcomes, dialysis technology, and system infrastructure, as well as improve the quality and satisfaction of patients’ lives. This is a change that could put MEI out of business. It would also force MEI to take positions that are in opposition of its biggest financial sponsors. Unfortunately, this solution works against MEI and many other patient advocacy groups that are currently filling gaps in the well-patient model.
Finally, it is necessary to include a few words about scare tactics. Scaring patients about possible changes has always been an effective tactic in the often self-serving world of dialysis patient advocacy. The large providers have been able to deliver patients to Capitol Hill decade after decade to lobby for them for increases in reimbursement, while providing these same patients with essentially no improvements in the quality of their lives. Unfortunately, scaring patients about changes in their disability coverage is also another very effective tactic to rally patients to keep the status quo. As an alternative, MEI could work to insure protections for patients that are currently disabled, as well as create opportunities for patients that teeter on the edge of being able -- or wanting -- to work.
May 18, 2016 7:17 PM
The only way to find out what people on dialysis today would consider "rehabilitation" would be to ask them. We would be happy to do that--if we had support to do a study. Unfortunately, research funding has been challenging to come by. I largely suspect, though, that you and I largely agree on goals and strategies--it's tactics where our paths separate. You believe that rehab programs and a well patient approach can keep people working or get them back to work. I believe that helping people make a dialysis choice that fits their lives--including their desire to work--will do more than any program ever could. That's why we built the decision aid.
Increasing the MSP duration, as you suggest, is the dialysis industry's fondest dream. Who wouldn't want to tap insurance companies for 10x or 20x the Medicare rate for longer? Historically, when the MSP was extended from 18 to 36 months, however, employment DROPPED. Health costs were so high that employers found ways to get rid of their most expensive workers. Further extending the MSP is thus likely to harm working patients more than it helps them. I'm not convinced that there is a way to create an incentive to keep people in their jobs. Cancer and dialysis are the two most expensive illnesses to insure. And, there is no guarantee that the industry would use increased revenue to coordinate care even if they did get it--more likely, it would enrich shareholders.
I do agree with you that there must be SOME way to align the financial incentives in a way that WOULD help more patients to be "rehabilitated." My favorite idea at the moment is to pay for dialysis hourly so there would be an immediate push for longer treatments--at least some of which would be done in-center at night during sleep. (Currently, staffing for this option has been challenging enough that there has been a 50% drop in in-center nocturnal programs over the past 5 years, but better payment could help...) Watch for a guest blog post soon about this idea.
The entire theme of this election cycle is scare tactics. Unfortunately, they do work, and all of the issues we have discussed are complex enough that it is extremely challenging to fight the misconceptions and errors. There are protections in place now for people who are disabled, but we absolutely want to help create opportunities for people who want to keep their jobs and have lives despite kidney disease.
May 07, 2016 3:28 PM
A big dent in reaching CKD patients can be made by nephrologists, if only they would.
May 12, 2016 5:50 PM
May 06, 2016 1:34 AM
1. Great blog ... right on target
2. Absolutely spot on re the need to begin way back in CKD and not wait till the onset of dialysis to intervene - by then, the hurdles are largely in place, too high and too many for most to jump
3. All the insurance comments are a resounding endorsement for the single payor, universal health schemes and programs that apply in almost all the lucky OECD nations (ie: the non-US, rest-of-the-first-world countries) - like my own in Australia - where insurance status and employer cover (or non-cover) etc. doesn't matter, and where every citizen is equally covered and has equal, no cost access paid for by a 1.5% level on total income that is applied to all citizens - regardless - to cover the costs of healthcare. Why you all (and, oddly, this applies to the US alone) have such irrational fear of 'socialized' healthcare when, indeed, the true and embracing term is 'social' healthcare, utterly defeats all logic. Your 2016 'Bernie' is right on the money, if only more of you would heed his message.
May 12, 2016 5:53 PM