Advocates Say Lack of Transportation Services Is the “Road to Nowhere” For Many Americans Fighting Serious Diseases
2016-06-30 | May 19, 2016
Washington, DC – Calling lack of transportation the nation’s other health disparities problem, a national group of healthcare stakeholders discussed the need to expand Medicaid’s non-emergency medical transportation benefit to more Americans and to explore opportunities through the Affordable Care Act (ACA) to increase transportation services for certain Medicare populations.
Meeting at a policy consortium convened by the National Patient Advocate Foundation (NPAF), experts and patient advocates addressed the growing transportation needs of millions of Americans undergoing treatment for cancer and other serious diseases, many of whom miss their appointments, don’t fill their prescriptions and forgo treatment because they don’t have a reliable way to travel to the clinic or pharmacy. Among the challenges patients face are hours spent on trains and buses to get to treatment facilities; no public transportation systems in rural areas; and substantial out-of-pocket costs for gas, parking and tolls when patients must travel long distances for medical care. Compounding these problems, many patients are not considered for clinical trials due to their transportation problems.
“The last thing patients should be challenged with is getting to and from their medical treatment,” said Alan Balch, PhD, Chief Executive Officers of NPAF and the Patient Advocate Foundation (PAF), which provides patients with a range of services to obtain quality medical care. “Lack of transportation is a vastly underappreciated barrier preventing Americans from receiving the most appropriate evidence-based care and must be addressed at the state and federal levels.”
New Findings Document an Unacceptable Burden on Patients
Providing new insights on the burden for patients, Gwen Darien, NPAF’s Executive Vice President of Patient Advocacy, presented the results of a new Patient Advocate Foundation Data Report, which document extensive transportation barriers facing medically underserved Americans who are at greatest risk for developing and dying from chronic diseases –older adults, women, low-income patients and those living in rural areas.
According to the PAF report, 15 percent of the 80,596 patient problems PAF case managers handled in 2015 involved transportation issues that led to missed appointments, delayed treatment and the decision to abandon treatment entirely. PAF then conducted an in-depth survey of 146 patients to identify those most in need of transportation assistance, which revealed disparities in transportation access that are widespread across the nation. Those hardest hit are patients with an annual income below $47,000 (90 percent), adults aged 46 and above (80 percent), and women (60 percent).
Additionally, more Caucasians (60 percent) than African American patients (20 percent) have transportation problems, according to the PAF assessment, and the majority are insured through Medicare (35 percent), commercial health plans (32 percent) and Medicaid (17 percent). In fact, only 15 percent are uninsured.
Reflecting what experts call “access toxicity,” the new PAF data further shows the extent to which transportation barriers impede access to quality care. Due to lack of reliable transportation services, 40 percent of underserved patients skip at least one appointment, as many as 60 percent don’t fill all their prescriptions because of difficulty getting to the pharmacy, and many change the site of their care based on location. Moreover, many patients and their families struggle with transportation costs, which average up to $46 per appointment, especially when patients require treatment several days a week. As community clinics close nationwide, especially in rural areas, patients must travel longer distances for treatment. According to new PAF data, 12 percent of patients with transportation challenges travel more than 200 miles for tests and treatment.
Putting a human face of these challenges, Janet Giddens, who lives with her husband on the Eastern Shore of Virginia, relayed the travel nightmares she encounters driving four days a week at 450 miles roundtrip so her husband can receive treatment at a cancer center in Salisbury, Maryland. Ms. Giddens’ grown children pitch in to provide gas money but just paying the transportation costs has meant cutting back on food purchases and other expenses and juggling to pay the bills at the end of the month.
“You can make as many appointments as you want, but unless you can get to treatment, it is no good,” Ms. Gidden told attendees at the NPAF policy consortium. “I hope policymakers will find solutions so people with terrible diseases can get the care they need.”
The Need for Policy Change
Because lack of transportation services has not been on the public radar, experts speaking at the policy consortium agreed that federal, state and local action is needed to integrate transportation into the health delivery system.
The advocates agreed on the need to:
- End jurisdictional boundaries between counties and states that prevent transportation services from crossing borders
- Expand the authority and fund additional resources to the Federal Interagency Transportation Coordinating Council on Access and Mobility (CCAM), chaired by the Secretary of Transportation and involving numerous federal agencies, to make more transportation services available to patients with serious diseases
- Increase Medicaid’s non-emergency medical transportation (NEMT) benefit, which provides transportation to underserved patients
- Identify opportunities through the Affordable Care Act (ACA) to expand transportation services for Medicaid and Medicare beneficiaries. This proposal includes expanding the number of states that obtain Medicaid waivers to provide transportation services as part of their HCBS (home and community-based services) programs and covering nonmedical, community transportation as a Medicaid homeand community service under ACA initiatives that target low-income patients with mobility needs
- Pass federal legislation to cover transportation services under Medicare.
“Our goal is simple and straightforward,” said Dr. Balch. “We intent to elevate transportation services as a priority issue for the Congress and the Administration and point to realistic solutions that will lead to more patients and families getting the assistance they need to fight a terrible illness.”
NPAF’s Policy Consortium, Transportation: The Road to Nowhere for Too Many Patients, was held in Washington, DC on May 18, 2016. Attendees included representatives from health professional societies, patient advocacy organizations, community transportation associations, research centers, consumer organizations and pharmaceutical companies.
About the National Patient Advocate Foundation
Based in Washington, DC, the National Patient Advocate Foundation (NPAF) is a national non-profit organization amplifying the patient voice in support of access to, and reimbursement for, affordable, high-quality health care through public reforms and private partnerships. The advocacy activities of NPAF are informed and influenced by the experience of patients who receive direct, sustained case management services from NPAF’s companion organization, Patient Advocate Foundation (PAF). NPAF/PAF were established in April 1996.