Dialysis Transportation: The Intersection of Transportation and Healthcare (2019)

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Dialysis: Most Common Treatment for End Stage Renal Disease ■ Chronic kidney disease (CKD) is a crisis in the United States for medical care and public policy. Approximately 30 million adults have CKD which too often progresses to end stage renal disease (ESRD).(1, 2) ■ More than 700,000 people in the United States have ESRD, increasing by about 20,000 each year.(3) ■ Dialysis is the most common treatment: almost one-half million ESRD patients receive dialysis.(4) ■ 90% of dialysis patients travel to dialysis facilities for required 3-times-per-week treatments.(5) Dialysis Trips and Cost ■ An estimated 139 million one-way trips are needed for dialysis at facilities annually. ■ Almost 70 million of these trips are provided by the public sector, particularly by public transit agencies’ specialized services including ADA paratransit and Medicaid non- emergency medical transportation. ■ Almost $2 billion annually is required for public sector trips. What Are the Transportation Problems? Reported by Dialysis Patients ■ Vehicles are late getting to the dialysis facility. ■ Long waits for the ride home after dialysis. ■ Trips are long. ■ Sometimes the ride never shows up or is cancelled, so treatment is missed. ■ Unreliability is very stressful. Reported by Dialysis Facilities ■ Patients have long waits for the trip home after treatment. ■ Medicaid transportation is unreliable. ■ Public transit agencies’ services are inadequate: days and hours are limited; service area is limited; dialysis trips on ADA paratransit cannot be prioritized. ■ Transportation problems result in shortened treatment, with negative impacts on patients’ health. ■ Patients have difficulty paying for transportation if it is not subsidized by their insurance, which usually is Medicare. Reported by Public Transportation Agencies ■ Rising demand and costs for dialysis trips are a problem, and they impact the ability to serve other trips. ■ Scheduling is a problem: patients are often not ready for the trip home, requiring extra resources for rescheduling. Dialysis facilities change patients’ schedules, often with little notice. ■ Dialysis facilities do not coordinate on patients’ trips, so service is less efficient and more costly. Staff turnover at dialysis facilities frustrates attempts to coordinate. ■ Extra care needed by dialysis patients is beyond that required of public transit. What the Research Found — Problems with Dialysis Transportation Fundamental Finding Public transportation and healthcare intersect in ways that often lead to negative health outcomes for thousands of people in the United States with failed kidneys who rely on transit agencies and other public sector modes for trips to dialysis—a treatment that is literally saving their lives. These negative outcomes result from transportation problems that impact not just patients who must travel to a facility for treatment but also public transportation agencies that serve dialysis trips. Dialysis Transportation: The Intersection of Transportation and Healthcare TCRP Research Report 203 Info Brief 1 of 2 continued 0 100,000 200,000 300,000 400,000 500,000 600,000 700,000 800,000 Number of ESRD Prevalent Cases in U.S. Population, 1980–2015

References 1. R. Rettig, et al. “Chronic Kidney Disease in the United States: A Public Policy Imperative,” Clinical Journal of the American Society of Nephrology, Vol. 3, Issue 6, pp. 1902-1910, 2008. 2. United States Renal Data System. 2017 USRDS Annual Data Report: Epidemiology of kidney disease in the United States. National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Diseases, Bethesda, MD, 2017; National Chronic Kidney Disease Fact Sheet, 2017. Available at www.cdc.gov/diabetes/ pubs/pdf/kidney_factsheet.pdf. 3.-5. United States Renal Data System, 2017. 6. K. Chan, et al. “Adherence Barriers to Chronic Dialysis in the United States,” Journal of the American Society of Nephrology, Vol. 25, No.11, pp. 2642–2648, 2014. 7. C. Obialo, et al. “Relationship of Missed and Shortened Hemodialysis Treatments to Hospitalization and Mortality: Observations from a US Dialysis Network,” Clinical Kidney Journal, Vol. 5, No. 4, pp. 315–31, 2012. 8. Chan, “Adherence Barriers to Chronic Dialysis in the United States.” 9. M. Moist, et al. “Travel Time to Dialysis as a Predictor of Health-Related Quality of Life, Adherence, and Mortality: The Dialysis Outcomes and Practice Patterns Study,” American Journal of Kidney Diseases, Vol. 51, No. 4, pp. 641-650, 2008. Medical Literature Confirms Negative Impacts of Transportation Problems ■ Patients reliant on public transportation miss more dialysis treatments compared to patients with private transportation (self-driven or rides from family/friends), resulting in poorer health outcomes.(6) ■ Transportation is a factor in missed and shortened dialysis treatments, which are associated with increasing hospitalization, contributing to rising healthcare cost.(7) ■ Patients who miss treatment place themselves at increased risk for hospitalization or death.(8) ■ Long travel times for dialysis are associated with greater risk of death.(9) Funding Programs Impact Dialysis Transportation—for Patients and Public Transit Agencies ■ Medicare, the main source of payment for ESRD and dialysis, does not pay for routine dialysis transport. Medicare patients without private transportation or living in communities without ADA paratransit or other public specialized service must fund their own trips, which can be costly. ■ Medicaid provides free trips but increasingly uses private brokers with a payment structure incentivizing the use of least cost transportation providers—in some cases public transit agencies—which may not be the best option for patients. ■ Public transportation agencies receive no special funding for dialysis trips. Transit agencies must increasingly look to their communities for local funds to support day-to-day operations. “Transportation providers often do not show up or are quite late, both of which decrease the amount of dialysis received by the patient, thereby negatively affecting their health.” “Transportation problems have a huge impact on our patients. They often report this to be the number one stressor in coping with ESRD. [It would be better] if transportation services catered to our patients as they have unique considerations.” – Social Workers at Dialysis Facilities “Special care is needed with patients on the return trip due to frail status and bleeding. The...needs of these passengers go beyond what a public transit driver can provide.” “We had a coordinated system [but] Medicaid trips have been removed…more people are using ADA paratransit for dialysis because HMO providers [are] unreliable so people would rather [use] ADA. This trip dumping puts the burden on the community...” – Managers of Transit Agencies Quotes from the Research Project’s Surveys

Public Transit Agencies Can Try to Improve Transportation Public transit agencies can consider strategies implemented by other transit agencies and identified in the research that attempt to serve dialysis trips more effectively. But these efforts do not solve the challenges of dialysis transportation. One finding of this research is that public transportation is not appropriate for the many dialysis trips that require care more specialized than public transportation is designed to provide. Efforts by Public Transit Agencies Fifteen strategies are highlighted in the report, with differences depending on whether the community has ADA paratransit. ■ Transit agencies with ADA paratransit face regulatory constraints. Regulations prohibit any priorities for trip purpose, even for dialysis. ADA also prohibits any trip denials. Transit agencies need to add service to meet all the demand, and this increases their operating costs. ■ Agencies without ADA paratransit service, often rural agencies, do not face the same regulatory constraints but often have limited service days and hours while dialysis facilities operate beyond those days and hours. These agencies may also deny trips when schedules are full. Efforts by Dialysis Facilities ■ The research found no examples of dialysis facilities routinely funding or providing patient transportation. What the Research Found — Improving Dialysis Transportation? Fundamental Finding Public transportation and healthcare intersect in ways that often lead to negative health outcomes for thousands of people in the United States with failed kidneys who rely on transit agencies and other public sector modes for trips to dialysis—a treatment that is literally saving their lives. These negative outcomes result from transportation problems that impact not just patients who must travel to a facility for treatment but also public transportation agencies that serve dialysis trips. Dialysis Transportation: The Intersection of Transportation and Healthcare TCRP Research Report 203 Info Brief 2 of 2 continued

References 1. Office of the Inspector General of the Federal Department of Health and Human Services. “Medicare and State Health Care Programs: Fraud and Abuse;” Revisions to the Safe Harbors Under the Anti-Kickback Statute and Civil Monetary Penalty Rules Regarding Beneficiary Inducements, December 2016. 2. General Accountability Office. “End-Stage Renal Disease Medicare Payment Refinements Could Promote Increased Use of Home Dialysis.” Report to Subcommittee on Health, Committee on Ways and Means, House of Representatives, 2015. 3. Indian Health Service: Special Diabetes Program for Indians. “Changing the Course of Diabetes: Turning Hope into Reality,” Report to Congress, 2014. https://www. nihb.org/sdpi/docs/05022016/SDPI_2014_Report_to_Congress.pdf 4. H. Heiman and S. Artiga. Beyond Health Care: The Role of Social Determinants in Promoting Health and Health Equity. The Henry J. Kaiser Family Foundation, 2015. 5. S. Syed, et al. “Traveling Toward Disease: Transportation Barriers to Health Care Access,” in Journal of Community Health, Vol. 38, No. 5, pp. 976-993, 2013. Healthcare Industry Could Have More Impact Dialysis Facilities Can Fund and Provide Transportation Revisions to the federal Safe Harbors Under the Anti-Kickback Statute now allow healthcare providers and specifically dialysis facilities to fund and provide patient transportation. According to the federal language, the revised ruling will save federal healthcare dollars as “dialysis patients are a population...identified as contributing to the increasing cost of non-emergency ambulance transportation and would benefit from local transportation furnished by [dialysis] providers.” (1) Cost-Sharing with Medicaid Successful coordination and cost-sharing arrangements where Medicaid supports dialysis trips shifted to ADA paratransit should be pursued and shared among Medicaid programs. Centers for Medicare and Medicaid Services (CMS) guidance allows Medicaid agencies to contribute to the cost of transit agency trips with a “negotiated rate”—not the full operating cost but more than the fare. Home Dialysis Increasing home dialysis use will reduce the need for dialysis transportation and may benefit patients, as home treatment has been associated with greater patient independence and improved quality of life. Less than 10% of ESRD patients dialyze at home; physicians and other stakeholders estimate that 15% to 25% of patients could realistically be on home dialysis.(2) Reduce Kidney Disease Healthcare programs that tackle the growing incidence of chronic kidney disease that too often results in ESRD could reduce the need for dialysis transportation. The Special Diabetes Program for Indians, for example, reduced the incidence of ESRD among Native Americans by 43% from 2000-2011, a rate greater than any other racial group in the country.(3) Transportation—A Key “Social Determinant of Health” Transportation is a significant social determinant of health—one of “the structural determinants and conditions in which people are born, grow, live, work and age.”(4) Transportation is necessary for ongoing healthcare, particularly for those with chronic diseases such as ESRD. Without reliable and timely transportation, patients miss or delay appointments, leading to poorer disease management and poorer health outcomes.(5) As the healthcare industry increasingly embraces its responsibility for the social determinants of health, the healthcare sector may recognize its role and responsibility for dialysis transportation. “Dialysis patients suffer tremendously from lack of appropriate transportation…” “…it would be better if dialysis centers were able to have their own transportation company to transport patients…” “Having transportation added to Medicare would be a wonderful addition for our dialysis patients. Or finding a solution that works for this high risk population.” – Social Workers at Dialysis Facilities “The structure and policies required for ADA paratransit are the greatest challenge for dialysis patients. Policies such as the 30-minute pick-up window and shared-ride nature of the service make it tough, as post- treatment patients are generally physically drained.” “Dialysis transportation has become a huge issue. The demand is growing but our resources are not…” – Managers of Transit Agencies Quotes from the Research Project’s Surveys

Abbreviations and acronyms used without definitions in TRB publications: A4A Airlines for America AAAE American Association of Airport Executives AASHO American Association of State Highway Officials AASHTO American Association of State Highway and Transportation Officials ACI–NA Airports Council International–North America ACRP Airport Cooperative Research Program ADA Americans with Disabilities Act APTA American Public Transportation Association ASCE American Society of Civil Engineers ASME American Society of Mechanical Engineers ASTM American Society for Testing and Materials ATA American Trucking Associations CTAA Community Transportation Association of America CTBSSP Commercial Truck and Bus Safety Synthesis Program DHS Department of Homeland Security DOE Department of Energy EPA Environmental Protection Agency FAA Federal Aviation Administration FAST Fixing America’s Surface Transportation Act (2015) FHWA Federal Highway Administration FMCSA Federal Motor Carrier Safety Administration FRA Federal Railroad Administration FTA Federal Transit Administration HMCRP Hazardous Materials Cooperative Research Program IEEE Institute of Electrical and Electronics Engineers ISTEA Intermodal Surface Transportation Efficiency Act of 1991 ITE Institute of Transportation Engineers MAP-21 Moving Ahead for Progress in the 21st Century Act (2012) NASA National Aeronautics and Space Administration NASAO National Association of State Aviation Officials NCFRP National Cooperative Freight Research Program NCHRP National Cooperative Highway Research Program NHTSA National Highway Traffic Safety Administration NTSB National Transportation Safety Board PHMSA Pipeline and Hazardous Materials Safety Administration RITA Research and Innovative Technology Administration SAE Society of Automotive Engineers SAFETEA-LU Safe, Accountable, Flexible, Efficient Transportation Equity Act: A Legacy for Users (2005) TCRP Transit Cooperative Research Program TDC Transit Development Corporation TEA-21 Transportation Equity Act for the 21st Century (1998) TRB Transportation Research Board TSA Transportation Security Administration U.S. DOT United States Department of Transportation

D ialysis Transportation : The Intersection of Transportation and H ealthcare TCRP Research Report 203 TRB TRA N SPO RTATIO N RESEA RCH BO A RD 500 Fifth Street, N W W ashington, D C 20001 A D D RESS SERV ICE REQ U ESTED ISBN 978-0-309-48035-2 9 7 8 0 3 0 9 4 8 0 3 5 2 9 0 0 0 0