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

Below is the uncorrected machine-read text of this chapter, intended to provide our own search engines and external engines with highly rich, chapter-representative searchable text of each book. Because it is UNCORRECTED material, please consider the following text as a useful but insufficient proxy for the authoritative book pages.

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 Why This Report on Dialysis Transportation? The �irst answer is that this report responds to the major concerns of public transportation agencies about the rising demand and cost to provide dialysis trips and experience showing these trips require service more specialized than public transportation is designed to provide. The second answer is that this research report documents the complicated relationship of two different industries—public transportation and healthcare, each with its own perspective and requirements—to highlight the problems, identify strategies addressing concerns, and suggest options that may be more appropriate for dialysis transportation. The fundamental problem is that transportation and healthcare intersect in ways that often lead to negative health outcomes for the 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. Increasing Demand for Dialysis Transportation Chronic kidney disease has reached a crisis in the United States—for both medical care and public policy. Approximately 30 million people or 15% of U.S. adults have the disease, and increasing numbers of those will likely progress to the disease’s �inal stage when the kidneys fail—end stage renal disease (ESRD). More than 700,000 people in the country have ESRD and the number increases by about 20,000 each year. From 2000 to 2015 (the year with the most recent national data), the number of ESRD patients increased by an alarming 80%. While kidney transplantation is considered the preferred treatment for many, dialysis is by far the Summary Dialysis Transportation: The Intersection of Transportation and Healthcare Summary S.1 most common treatment.

Photo courtesy of KFH Group. At the end of 2015, almost one-half million ESRD patients were receiving kidney dialysis and, of these, 90% traveled to dialysis facilities for their required 3-days-each-week treatments. This translates to almost 139 million one-way trips annually for dialysis. Findings from this research project combined with other studies of dialysis transportation estimate that approximately half of patients rely on public sector transportation modes for dialysis—in particular, public transit's specialized services including ADA paratransit, and Medicaid's non-emergency medical transportation (NEMT). Other public sector modes with smaller roles include U.S. Department of Veterans Affairs (VA) vehicles, human service agencies, and taxis and ambulances, among others. This means that the public sector may be responsible for close to 70 million trips annually for dialysis. Increasing Cost for Dialysis Transportation Cost data from this research project estimate that public sector trips to dialysis facilities require almost $2 billion annually—a large and startling number. This is a rough estimate, but it is important to recognize that public transportation agencies have a signi�icant role in providing and funding those millions of public sector trips. Results from the Research Project The research, conducted over an 18-month period, involved a literature review; surveys of transit agencies, dialysis facilities, and dialysis patients; information, data, and consultation with healthcare professionals on the research team; development of a forecasting tool to estimate needs and costs for dialysis transportation; and follow-up with selected public transit providers to document efforts to provide dialysis trips more effectively. Significant Challenges Face Dialysis Patients and Public Transportation Agencies For patients and nephrology social workers at the dialysis facilities, transportation is a major concern. • Patients and social workers complain that transportation is unreliable: vehicles are late dropping off patients for their treatment and late picking up patients after treatment; vehicles never come—the transportation provider cancels the trip or is a no-show. S.2 Dialysis Transportation: The Intersection of Transportation and Healthcare

More than 100 of 262 surveyed social workers provided comments and concerns; six quotes follow: "Some transportation services have patients waiting a very long time after treatment to be picked up. Patients who wait long periods of time after treatment seem to have frequent physical declines." "Transportation providers often do not show up or are quite late, both of which tend to 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." "In a rural area like ours, transportation resources are so limited. The transportation that is available cannot transport patients at typical dialysis times causing patients to have to get off treatment early or start treatment late." “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…” • The unreliability is stressful. Patients are anxious—they worry about missing their trip home, so they end dialysis treatment early so they will not miss their ride. • Transportation problems for patients reliant on publicly provided transportation services negatively impact their treatment. • The social workers spend hours dealing with patients’ transportation problems—time and effort detracting from their primary responsibilities. Perhaps most critical from a healthcare perspective is the impact of unreliable transportation on the health of dialysis patients. Medical literature has identi�ied transportation as a factor in missed and shortened dialysis treatments which leads to negative health outcomes. These adverse outcomes include, among others, increased hospitalizations because patients do not receive their scheduled treatments. For public transportation agencies, dialysis transportation has become a critical concern as increasing numbers of individuals with ESRD turn to their community’s public transit service for their six trips each week for dialysis. • Signi�icant numbers of trips are dedicated just to dialysis, impacting the ability to meet other trip needs. • Scheduling is a major problem, particularly for return trips from dialysis: patients are often not ready for their scheduled trip because they are not medically stable or from delays in starting or during treatment. Dialysis facilities change treatment days and times, sometimes with little notice. • Transit agencies report that dialysis facilities do not work with transit agencies to coordinate transportation with dialysis treatment, resulting in less ef�icient and therefore more costly transportation service. • Particularly for transportation agencies providing ADA paratransit, increasing demand for dialysis trips is a severe problem since ADA regulations prohibit any capacity constraints—in other words, the dialysis trips cannot be denied. Transportation Funding and the Lack of Funding Have Impacts Funding programs impact dialysis patients as well as public transit agencies. • Medicare, the main source of payment for ESRD and dialysis, does not pay for routine transport of patients for dialysis treatment. Medicare patients without private transportation (self-driven or rides from family or friends) Summary S.3

Comments from more than 140 of 500+ transit agencies surveyed underscore the problems. Quotes from five agencies follow: "To serve dialysis trips, we have to put drivers on the road at 4 am, two hours earlier than before. This places strain on drivers but also on maintenance and dispatch that now need to be ready to react to issues as early as 3:30 am. There is no compensation for this operational cost.” "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." “The problem we encounter most frequently is that a rider is late getting off dialysis and we have to leave to do other scheduled trips. The rider is then left waiting... [which is hard] as the rider is weak and ill…” "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..." “…dialysis centers are only concerned with making sure each ‘chair’ is maximized. [Dialysis center] staff…are only interested in telling transportation how to get patients there. They are not concerned with ADA and what that means [is] no trip priorities. [Dialysis] is a huge money maker for the companies.” or in communities without ADA paratransit or other public specialized service must fund their own trips, which can be costly. • Medicaid patients, on the other hand, receive free transportation for dialysis. Yet, Medicaid increasingly uses private brokers with a payment structure incentivizing the broker to use the least cost transportation provider, even though this may not be the preferred provider for the dialysis patient's medical condition. • 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. Disconnects Between Public Transportation and Healthcare The differing perspectives and funding programs between public transportation and healthcare make clear serious disconnects: • Transit agencies report that dialysis riders are not ready for their return trip. Social workers report patients have long waits for their return trips. • Transit agencies report that they inform dialysis facilities about what they can and cannot do as public transit providers. But social workers appear not to understand the constraints and legal framework of ADA paratransit, which, for one, prohibits any trip purpose prioritization— even for critical medical trips. • Transit agencies report changing patient schedules and a lack of coordination with dialysis facilities for transportation. Social workers report that they consider patients’ transportation needs when scheduling treatment. • Problems with transportation are a major stress for patients. Healthcare Quality of Life surveys of dialysis patients address biological symptoms, but do not include transportation. • The shifting of Medicaid trips to public transit agencies’ ADA paratransit without funding coordination with Medicaid is a major concern for public transit. Yet federal guidance through the Centers for Medicare and Medicaid Services (CMS) and language from a CMS ruling implementing the De�icit Reduction Act of 2005 allow Medicaid S.4 Dialysis Transportation: The Intersection of Transportation and Healthcare

Photo courtesy of KFH Group. agencies to contribute to the full cost of trips with a “negotiated rate” (more than the fare). In practice, coordination is rare. What Can Be Done? Communities can look to strategies and practices identi�ied in the research and documented in the report that public transit agencies use to try and serve dialysis trips more effectively. These actions are noteworthy, but they do not solve the challenges of dialysis transportation. One �inding 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. Public transportation agencies may fairly question their role in providing dialysis trips. It is appropriate to look to the healthcare industry for its participation, as healthcare initiatives could have more impact on dialysis transportation. Dialysis facilities can fund and provide transportation—The medical community including dialysis facilities are now allowed to participate in funding and providing patient transportation through revisions to federal law that restricted participation in the past. Their involvement—with care tailored to patients—would help improve dialysis transportation. Their involvement may also help ensure better health outcomes for their dialysis patients. Cost-sharing with Medicaid—The fact that public transportation agencies serve Medicaid trips in many communities and some of these trips are dialysis trips, communities should work toward improved coordination and cost-sharing with their state’s Medicaid agency for the dialysis trips. Home dialysis—Increasing the use of home dialysis is another healthcare initiative that would not only reduce the need for dialysis transportation but also may bene�it patients. Home treatment has been associated with greater patient independence and improved quality of life. 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, at least in the longer term. One such initiative—the Special Diabetes Program for Indians that has signi�icantly reduced the incidence of ESRD among American Indians and Alaskan Natives—may be a useful disease management program for other population groups. As the healthcare industry increasingly embraces its responsibility for the social determinants of health—of which transportation is a key determinant— it may be that the healthcare sector recognizes its role and responsibility for dialysis transportation. Summary S.5