When Congress passed legislation in 1972 authorizing Medicare to establish and fund the End-Stage Renal Disease Program, it miscalculated on both the eventual census (assumed about 35,000 prevalent patients each year) and the cost of the program (about $1 billion a year). That’s not unusual for government regulators. But the legislators got one other thing wrong: that most individuals, once saved by dialysis, would retain their place in the work force.

Things changed. The price of the program increased, of course, as the therapy was offered to more patients with extended life spans. While growth has been seen in all age groups over 21 years old, dialysis has always been considered a disease of the Baby Boomer and older set. The adjusted rate of prevalent ESRD for patients age 65–74 has increased 27% since 2000, while the rate among those age 75 and older has grown 44%, according to U.S. Renal Data System data. Among those age 20–44 and 45–64, in contrast, growth has been 14–19%, respectively.

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That makes the notion of vast armies of employable patients a bit foggy. Dialysis pioneers Clyde Shields and Shep Glazier were in their 40s, a machinist and insurance salesman, respectively, and both fathers when stricken with kidney disease in the 1960s. Typical then, atypical now, right?

Worker bees

Not so fast. According to the USRDS, while incident growth is the most extensive among the elderly, about 200,000 of the 661,000 individuals with kidney disease in the U.S. at the end of 2013 were in the employable 21–55 age range. Yet only 10% of the entire patient population were employed. That 10% employment rate is down from 19% in 2004.

Have we made it too easy for dialysis patients not to be employed?

The curse of disability pay

Once individuals qualify for the Medicare program due to their ESRD, then can apply for disability no matter their age. But greater effort can be made in helping patients keep off disability and stick with their jobs before they lose them. It’s better for the patient, better for their family life, and better for society. “The ability to work is intimately tied to a person’s sense of self-worth, and the original intent of the Medicare End-Stage Renal Disease Program was to keep patients employed and productive,” wrote Denise Eilers, MSN, RN, in a recently article for the Renal Support Network.

Eiler’s husband was a successful accountant when he was diagnosed with ESRD in 1980. But dialysis didn’t change his career path. “…As my late husband and I began training for home hemodialysis, I distinctly remember one of our first conversations with the social worker. She said, ‘I understand you’re a busy CPA. Great! We don’t want dialysis to interfere with your job. So, what can we do to help? We’ll do our best to work your (home dialysis) training around your jobs. Do you want me to contact your employer too?’ That type of mindset should be universal,” wrote Eilers.

“However, patients habitually begin treatment suboptimally and fall into a downward spiral that ends in disability and unemployment. Work is one of the basic building blocks of a quality life. And quality of life is everyone’s goal.”

Keep punching the clock

Most advocates agree that the best road to employment is to keep the wheels turning. Helping patients in stage 3–4 CKD who are starting to feel the ill effects of uremia need to be encouraged to work with their employers to keep their jobs. How can dialysis providers help? By accommodating patients with late-night shifts, in-center nocturnal programs, and interceding with employers. In a 2008 study by Kutner et al., the authors found that employment rate was positively associated independently with availability of a 5 p.m. or later dialysis shift, with peritoneal dialysis or home hemodialysis training, and provision of more frequent hemodialysis. In addition, patient receipt of Vocational Rehabilitation services was more often reported in facilities with higher employment rates. 1

Associating employment with improved quality of life

Few studies are done these days on employment among ESRD patients; the general view is that most patients are too old to work and the debilitating impact of the therapy makes the demanding focus of a job unattainable. In a poster presented at the American Society of Nephrology meeting last November by Evans et al., DaVita Clinical Research team members looked at whether prolonged dialysis vintage, i.e., years on dialysis, affected employment status among employed dialysis patients. Dialysis vintage, mean age, and job category data were obtained from a sample of 16,069 employed patients from November 2014 through April 2015. Employment status was defined as regular full-time (≥ 30 hrs./wk), regular part-time (< 30 hrs./wk), Per diem (< 24 hrs./wk), The highest rates of employment were found in accommodation and food service (9%); retail and sales (9%); health care (7%); administrative and support (6%); transportation and warehousing (6%).

The data also profiled the employed patient, such as:

  • Regular full-time employed patients were older (52.6 years) than part-time (49.1 years) and per diem (49.0 years) patients.
  • Employment status was highest among all patients for all categories of employment during the first year on dialysis (35.7%) and dropped significantly by year two (14.4%). Employment status continued to drop as vintage increased and was lowest in the 10-year group (1.9%). “Although there were more full-time employed patients in year 1 (42.4%) than part-time (28.3%) or per diem (28.9%), by year 10, only 1.3% remained employed full-time,” the researchers said. Thus, the longer on dialysis, the less likely patients stayed employed.

In a 2011 paper by Muehrer et al., researchers looked at the factors associated with maintaining employment among working-age patients with advanced kidney failure.

Looking at patients who were working age and employed six months before dialysis initiation (United States Renal Data System data from 1992 through 2003), the researchers looked for an association with maintaining employment status and factors such as demographics, comorbid conditions, ESRD cause, insurance, predialysis erythropoietin use, and dialysis modality. They found that maintaining employment at the same level during the final 6 months before dialysis was more likely among 1) white men ages 30 to 49 years; 2) patients with either glomerulonephritis, cystic, or urologic causes of renal failure; 3) patients choosing peritoneal dialysis for their first treatment; 4) those with employer group or other health plans; and 5) erythropoietin usage prior to ESRD. “The rate of unemployment in working-age patients with chronic kidney disease and ESRD is high compared with that of the general population,” the authors wrote. “Treating anemia with erythropoietin before kidney failure and educating patients about work-friendly home dialysis options might improve job retention.” 2

What you can achieve

Perhaps one of the most valuable lessons here can come from dialysis patient Bill Peckham. Bill has been on various therapies since 1990 after experiencing a failed transplant (he now does nocturnal home hemodialysis), but he found it important to keep his job as a carpenter for an exhibit management company. Carpentry work helped him feel good and stay mentally sharp, he says. “Having a physical job really helped me,” he wrote in a recent article for The ESRD Network Coordinating Center series called #TogetherWeCan. “I’m on my feet all day. You have to keep moving.”

And now he can plan for a future, no different than others. “I’m coming to the point where I can retire with a pension. That’s amazing. I didn’t think I would be able to work when I started [dialysis].”

And why not? Bill has the right attitude. Let’s spread the word and help others do the same.

References

  1. Kutner N, Bowles T, Zhang R, Huang Y, Pastan S. Dialysis facility characteristics and variation in employment rates: a national study. Clin J Am Soc Nephrol. 2008 Jan; 3(1):111-6.
  2.  Muehrer RJ, Schatell D, Witten B, Gangnon R, Becker BN, Hofmann RM. Factors affecting employment at initiation of dialysis. Clin J Am Soc of Nephrol, 2011 Mar;6(3):489-96.