Two years ago the New York City-based pro bono legal group LegalHealth (LegalHealth.org)made its case in OT (4/25/10 issue) that attorneys should be the newest members of the cancer care team—at least from the point of view of supplementing psychosocial services. Now the public interest legal team is involved in raising its profession's recognition as an important resource for cancer patient navigation programs.
LegalHealth founder and Director Randye Retkin, JD, says that legal services are currently often not considered as a part of the navigation process.
As noted in OT's three-part series earlier this year on patient navigation (3/10/12, 4/25/12, and 5/10/12 issues, included together in this Collection on the OT website— bit.ly/OT-PtNavigation), the American College of Surgeons' Commission on Cancer is now mandating that cancer centers offer patient navigation services by 2015 as a condition for accreditation, and Retkin says she wants to make sure legal services are also included in the arsenal of resources available to navigation programs.
In fact, as she noted in a telephone interview, for the last several years she and her LegalHealth colleagues have lectured regularly at the Harold P. Freeman Patient Navigation Institute (PNI) about the role of legal services in patient navigation.
As described in the first article in the OT series (“How Harold Freeman Navigated the System to Take Patient Navigation from Concept to Standard of Care”), the goal of patient navigation is to reduce cancer mortality by eliminating barriers (financial, communications, medical system, psychological, and logistical) to cancer screening, diagnosis, treatment, and supportive care, by helping patients between the time of an abnormal finding and resolution of the finding by diagnosis and treatment. And over the years, patient navigation has been expanded to help patients with chronic diseases other than cancer, spanning the full spectrum of health care, including prevention, detection, diagnosis, treatment, supportive care, and end-of-life care.
Although the need for legal services is interwoven throughout many parts of the process, many people don't think of or realize this, said Retkin, who wants to raise awareness among those involved in patient navigation programs that legal help may be available at no cost to those navigating the complex medical system.
Asked about what he sees as the role of legal services in patient navigation, Harold Freeman, MD, said that he first met Retkin when he was heading the Ralph Lauren Center for Cancer Care and Prevention and she came by one day to see if LegalHealth could help.
“It wasn't then particularly about patient navigation,” he said, “but about providing pro bono legal services in general to our patients, and it turned out that LegalHealth lawyers would come once a month to meet with patients who had specific problems that could be helped through legal solutions.
“I hadn't really thought about it that much, but it lit a light bulb in my mind and by the time I'd established a patient navigation program at the Lauren Center it was a natural fit to put Randye and her legal service people in with the patient navigators because they were the ones who turned up the problems needing legal help.”
Freeman said that when he later created his PNI, Retkin volunteered to provide pro bono services as a course instructor in what is now a module on legal issues related to patient navigation.
LegalHealth, which is a division of the New York Legal Assistance Group (NYLAG), has partnered with about 35 legal or advocacy member organizations throughout the nation to create the National Cancer Legal Services Network (NCLSN), which provides pro bono legal aid to underserved people coping with the complexities of cancer.
The Network also now has a website (NCLSN.org) for sharing information and resources about free legal services related to cancer or other chronic diseases.
Retkin and Domna Antoniadis, JD, a staff attorney with LegalHealth, together with colleagues from the HIV/AIDS community, where Retkin practiced public interest law before starting LegalHealth in 2001, are currently working on a journal article that will explain in depth how legal services fit right in with patient navigation.
“People think financial, they think practical, but they don't think legal [when looking at overcoming barriers to cancer care]. The mission of NCLSN is to bring home the message that you can't provide services for people with any chronic illness without realizing that legal issues have a direct impact on access to care,” Retkin said.
Legal assistance can help some patients maintain cancer care services throughout their treatment and survivorship, she noted.
Acknowledging that people often equate legal with litigious actions, Retkin said people may not realize that many issues concerning quality of life involving chronic diseases can be helped through legal services—for example:
- Getting or maintaining insurance.
- Living in bad housing conditions.
- Not getting benefits you are entitled to.
- Needing reasonable accommodations because of a situation in the workplace.
- Immigration issues tied directly to benefits.
- Advance care planning.
She said that many places in the United States don't have pro bono medical-legal services and the Network was working to increase them through several different models, including legal partnerships or legal health services located in hospitals (which is the LegalHealth model), or working through bar associations, community organizations, or staffing hotlines.
“We want to start a movement. When I do training at the Freeman Navigation Institute once a month, I train at least 10 to 15 navigators from throughout the country,” she said. “Very few of them are aware of the need for legal services, and this serves as a great introduction to that need.
“My hope is that they will go into their communities, and as they are developing patient navigation programs they will realize that legal services are needed and try to find resources. They can work through our Network, but more pro bono programs need to be created, and that's our goal.”
In mid-June, LegalHealth received the Second Annual Joan H. Tisch Community Health Prize at Hunter College's Roosevelt House Public Policy Institute as a not-for-profit organization recognized for “distinguished accomplishment in the field of urban public health.”
And the group is organizing a second national conference for its Network members, funded through Pfizer and scheduled to take place in November in New York City.