Earning a paycheck: New initiative focuses on keeping CKD patients working

A report from the American Association of Kidney Patients and the Medical Education Institute outlines initial steps to help employed individuals with progressing chronic kidney disease keep their jobs.

The 78-page paper, entitled “KidneyWorks: A job retention program for people with chronic kidney disease,” includes a website which provides resources and serves as the group home base for developing recommendations presented in the report.

The report is the first phase of the KidneyWorks’ initiative. Phase 2 will involve refining the goals set forth in the white paper and developing a tool kit for patients and employers to help with job retention. Phase 3 will involve putting the toolkit to work in the CKD community.

The report is based on a consensus conference organized by the AAKP and MEI in Washington, D.C. last July with more than 30 national experts in the fields of patient engagement, renal care, health and insurance data mining, labor force data mining, federal reimbursement, physical exercise, renal social work and vocational rehabilitation.

During the conference, stakeholders identified issues and barriers that interfere with patient goals to stay healthy, remain engaged, continue working and paying taxes. Expert participants formulated strategies and recommendations to help patients slow progression of their disease, successfully manage symptoms, maintain incomes and standards of living and preserve their quality of life.

There was an “overwhelming sense that [employment] needed to be addressed,” said AAKP president Paul Conway and a 20-year kidney transplant recipient. Prior research by MEI through its Life Options Program www.lifeoptions.org showed that patients who chose peritoneal dialysis had a stronger likelihood of staying employed.

“We have been interested in this for a very long time,” MEI President Dori Schatell told NN&I. “A large portion of work on quality of life for kidney patients is done overseas. In the U.S., we treat renal failure as a clinical problem, but it’s not like that. Every single aspect of life is affected by kidney disease.”

Getting assistance early

Conway and Schatell agree that intervention with CKD patients when the disease is still in early stages is the right time to help patients keep their jobs. People give up jobs as CKD worsens because “they are exhausted; they become anemic. And we don’t treat it,” said Schatell. Conway said a key team player will be health plans who see the value of keeping patients healthy and keeping them employed. Slowing down the progression of CKD, and its effects, will help people feel healthy enough to stay on the job, he said.

The report’s authors note: “Kidney disease is both costly and devastating, but non-dialysis chronic kidney (ND-CKD) does not have to mean permanent disability. Working-age Americans who are diagnosed with CKD can have far greater independence to pursue their aspirations, achieve better health outcomes and contribute more fully to their families and society if they are able to slow the progression of their disease and stay employed. Barriers to their desire and ability to keep working must be identified and removed.”

While many working-age people with CKD do work, the report says that, between 2006 and 2014, 68,341 people with CKD lost their jobs in the six months before they developed ESRD.

“Keeping a job helps ensure access to preventive care they desperately need to delay or avoid kidney failure—and remain active, productive, tax-paying citizens,” the authors note.

Recommendations from the group to help patients retain employment are divided up by different specialties. Overall, five core recommendations include:

Raise awareness of CKD among the general public and those most at risk. Use creative approaches to target employers, organizations, clinicians, patients and families with key messages.

Identify CKD early and provide optimal medical and psychosocial management.

As soon as CKD is diagnosed, provide patients and family members with employment-supportive education. To continue working, patients must learn to self-manage CKD, understand their rights on the job, and obtain job support.

Take active steps to slow CKD progression. Help patients learn how to control blood pressure and blood sugar control, to exercise, lose weight, limit dietary protein, quit smoking, and learn symptoms to watch for and report.

Support kidney transplant recipients in the workforce. After a transplant, encouraging continued work, identifying meaningful work that creates a sense of purpose, encouraging employer flexibility, and offering vocational support are proven interventions to help people stay in the workforce.

Employers should allow flex-time or time off for medical appointments to promote better employee health. Likewise, these employers should retain workers with CKD to avoid the high costs of hiring and training new employees, many of whom will also have one or more chronic illnesses.

Medical and professional societies should also consider developing performance measures to support patient employment throughout CKD. Increasing nephrology fellows’ awareness of the challenges faced by employed patients—and the many benefits to patients and their families—and society—of continuing to work with ND-CKD.

For dialysis providers, the workgroup recommends that appointment times be made available for patients to accommodate their work schedules. They should also be proactive about educating patients about the value of working and help them avoid disability when possible. “Remember that patients who can keep their jobs are more likely to retain employer group health plans that will bring in more revenue to a practice or clinic than Medicare or Medicaid,” the authors note.

Government policy makers should also make it easier for business to hire CKD patients, including:

Recommend that government and private health plans cover early CKD screening of those who are at increased risk of progression

Encourage insurance companies, providers, and businesses to make it financially feasible to hire and retain employees with chronic illnesses, including ND-CKD.

Promote training for vocational rehabilitation counselors, social workers, and physicians that includes education about the unique needs of CKD patients who want to keep their jobs.

Provide tax credits for employers of any size to make accommodations, including telework when feasible, for those with chronic illnesses and disabilities.

Develop a national education campaign for employers and employees to explain the Americans with Disabilities Act and the Family and Medical Leave Act, and to debunk myths about hiring and retaining employees with a chronic illness.

Consider amending the Medicare Improvements for Patients and Providers Act (MIPPA) to expand qualified CKD education providers to include clinical social workers and add employment as a topic.

Expand MIPPA Kidney Disease Education (KDE) Services to include any Medicare patient diagnosed with CKD, not just Stage 4.

Study the feasibility of expanding the Family Medical and Leave Act to additional employers and encouraging employers to continue to pay workers during a medical leave of absence.

For other federal agencies, including CMS, the author suggest that the agency collect data on employment up to five years prior to ESRD and include the type of job (e.g., sedentary, active, mixed) on Form CMS-2728 (ESRD Medical Evidence Report).

Also:

Reimburse physicians, non-physician providers, and CKD health care teams to discuss goals, employment benefits, and barriers with their patients and work together to overcome them.

Provide sufficient reimbursement to motivate registered dietitians and clinical social workers to become Medicare providers so they can be reimbursed to see ND-CKD patients prior to ESRD.