Patient Advocates

PATIENT NAVIGATORS

A new breed of health care professional provides help for lower-income cancer patients with health care and work issues

Hearing a diagnosis of cancer is challenge enough.  If you are a lower-income cancer patient (or a loved one is), it adds another layer of distress, much of it financial. 

If you lack insurance, you may be worried about how you will pay for treatment. Even if you have a good job and insurance, you may be anxious about how you will meet your co-pays for treatment or medicines.  You may be worried about the costs of transportation to get to the hospital or clinic for treatment, especially if you live in a rural community and must travel a great distance.
Y
ou may be worried about losing your job if you must take off a lot of time to go through treatment.

All that anxiety can take a toll. Lower-income cancer patients have worse survival rates than those who are more financially secure--partly due to all the barriers to care, whether financial or cultural, studies have found. 
Getting better access to care can boost survival rates, and getting help with job-related issues can help you reduce stress and reserve energy to tend to your recovery.

Where to turn? Increasingly, a new breed of health care professionals called patient navigators are helping lower-income cancer patients deal with their health and employment issues.  Here, more about about patient navigators--who they are, where to find them, what they do.

Patient Navigators: The Concept

Patient navigators devoted to lower-income patients aim to close the disparity gap in health care. These compassionate people are experts at finding services and programs to help the lower-income patient gain access to better care while dealing with job-related issues. They've been called the shepherds or coaches of cancer care for lower-income patients.

While some may say everyone needs a navigator in today's complicated health care system, that misses the point, say advocates of these new navigators for lower-income cancer patients. Private patient navigator services already exist for those who want to hire a navigator and can afford to pay hourly fees of $50 or more.

The new patient navigator programs in place at hospitals and clinics help all patients, but target lower income patients. The programs are concentrated in facilities that treat many "underserved" patients without insurance or transportation. They don't charge a fee.

Who Are Patient Navigators?

Some patient navigators are lay members of the community with an interest in helping others. Some are nurses or social workers. In addition, some are cancer survivors themselves and share their stories. All receive training.

They must have good communication skills, know medical terminology and be familiar with the health care system. They should be resourceful people, quickly able to know where to turn for help and how to ask for it effectively. Much of the time, the navigator refers patients to other services, such as outside legal help to deal with job discrimination due to their cancer.

It's also important that the navigator be familiar with the populations they are working with--and to know the myths, misconceptions and misgivings that various cultures have about the health care system.

Navigators never make medical, legal or employment decisions--they simply guide you and inform you, so you can make the best decision.

What Do Navigators Do?

Services offered vary from program to program. Among the services offered by patient navigators are:

• providing educational literature about cancer, cancer treatments and side effects
• helping you get needed appointments with doctors and other health care professionals
• helping you get legal and other types of help if needed to deal with job-related issues and insurance issues
• helping you get child care or elder care, if needed, so you can get to appointments or get through a hospital stay
• referring you to support groups, cancer care classes or other programs found to be helpful
• helping you to find programs that will ease the financial burden, such as programs to pay for prescription drugs or insurance co-pays, or programs to offset transportation costs, or programs that will supplement or replace your income temporarily, and helping you through the application process
• helping with small but important incidentals, such as finding a source for wigs for a patient with hair loss from chemotherapy
• providing emotional support--not counseling or psychotherapy, but just a listening, caring ear.

Some benefits are offered without a patient having to reveal financial information, while other programs do require financial information, which is kept confidential.

Where Are the Navigators?

Navigators are typically found in large hospitals and clinics that treat many "medically underserved" patients, whether in rural areas or metropolitan communities. Navigators spend their days helping cancer patients get information and resources to help them get the best treatment possible and to keep stress--from work, family or other demands--at as low a level as possible.

Many programs in operation today in the U.S. are under the umbrella of two large patient navigator efforts sponsored by the National Cancer Institute and the American Cancer Society. Some programs get funding from other organizations and other sources.  But NCI and ACS are leaders in the movement.

• The National Cancer Institute's patient navigator program, launched in 2005, includes 8 sites. Programs are in place at Boston University Medical Center, Denver Health and Hospital Authority, George Washington University in Washington, D.C., C. H. Lee Moffitt Cancer Center & Research Institute in Tampa, Fla., the Northwest Portland Area Indian Health Board in Oregon, Northwestern University in Evanston, Il., University of Rochester in NY and the University of Texas Health Science Center at San Antonio. These research programs came about after President George W. Bush signed into law the "Patient Navigator Outreach and Chronic Disease Prevention Act of 2005."
  
• Patient navigator programs are operated at 80 sites by the American Cancer Society, which also launched the programs in 2005. Dozens more such programs are expected to launch in the next few years.  The American Cancer Society patient navigators go through training in collaboration with the NCI program.

The Research: Patient Navigators Help

The concept of patient navigators began with research by Harold P. Freeman, M.D., a former president of the American Cancer Society and now medical director of The Ralph Lauren Center for Cancer Care and Prevention, New York.

He researched the effect of patient navigators on how well breast cancer patients did at Harlem Hospital in New York City, where he worked in the early 1990s. In his research, he compared the differences in outcomes among patients who had early screening and the help of a patient navigator for their cancer and found great improvement in survival rates.

When he looked at the five-year survival rates of patients treated before 1986, with no navigation, with that of those treated from 1994 to 2000, who did have navigation and early screening, he found  survival rates rose from 39 percent to 70 percent.

Patient navigators save valuable time. In one study, presented in 2007 at the American Society for Therapeutic Radiology and Oncology meeting, researchers found that having a navigator dramatically reduced problem solving time in getting care. The researchers evaluated about 300 African-American and Latino cancer patients with average family incomes below poverty levels.  Accepting help from a navigator reduced the average time to find a solution for the problem--whether transportation, financial, language problems, job issues or other barriers--from 42 days to one day.

A Patient Navigator Advocate Speaks Out

Hannah Linden, M.D., an oncologist at the University of Washington, Seattle, who practices at the Seattle Cancer Care Alliance and Harborview Medical Center, is a patient navigator advocate. It's far beyond a convenience, she says.

"Patient navigators are a way to equalize the issues around vulnerable populations, and disparities from economics. It's not about making a medical decision [for you]; it's helping you get through the system.

This is about helping people who really otherwise are not going to get through the process. The navigator leads them to the resources in the community.

We fill out forms for patients to help them limit activities at work, and the quantity of work [they do during treatment] based on the toxicity of treatment. We provide letters and documentation to employers, and help coach the patient regarding issues such as complete disability [which won't allow them to work] and taking time off to treat the cancer [which will allow them to work later and longer].

We help them understand their rights, as protected by law, and offer to help the employer understand these issues.''

Three Patient Navigators Explain the Programs

Phyllis Colvin:  A patient navigator at Phoebe Putney Memorial Hospital Cancer Center, Albany, Ga.,trained by the American Cancer Society, Colvin talks about how she helps:

"I do always inquire about their job. If they are going to be out for an extended period of time, for more than two months, I might suggest they go to the Social Security Administration office and apply for disability. This is if they have paid in enough quarters.

A lot of the low-income women who have jobs haven't paid into enough quarters to disability to collect. If they haven't paid enough quarters in…then I help them decide whether to apply for disability or SSI [Supplemental Security Income, a federal monthly payment program for those who have low income, few resources and are disabled, blind or age 65 and above].

When patients apply, it takes a lot of time and a lot of back and forth. They need documentation from physicians, from specialists. The patient has to provide them all that information.

I make sure patients respond to all the mail they get. And tell them, 'If you don't understand it, go to the Social Security office and ask them to explain it to you.' Because if they don't respond [for a request for information] by the deadline date, they have to start the process all over."

Karen Schwaderer, R.N:  A certified oncology nurse, Schwaderer is director of patient navigation and clinical services at the University of Pittsburgh at McKeesport, Pa., and has published in the medical literature on the role of navigators. Here is her overview about the program:

"Many of our patients are working at minimum wage jobs. They may need to use vacation time [for time off for treatment], and often times they don't get paid at all.

This program [at University of Pittsburgh] intervenes at the point of diagnosis. The tumor registrars get every pathology report that comes into the hospital. They look at the demographic information and they say, OK, 'this patient has no insurance.'  They work with the physician who ordered the biopsy [or other health care providers] and they get the patient signed up for the program.

The three top [health-related] areas are transportation to health care, copayment issues and prescription [cost] assistance. People have huge co-pays when they have cancer because they often have different doctors [including a surgeon, an oncologist and others].   We have used cab services provided by the American Cancer Society. We help hook them up with prescription drug assistance programs.

Sometimes we sit down and do the application for them. We work to get them state funded medical assistance programs. I had one patient who had to drive 96 miles one way for radiation. We actually got reimbursement [from a charity] for her gas money. Navigators have done things like get patients food, or propane to heat their houses.''

Nicky Calhoun: Nicky Calhoun works at Northwestern Memorial Hospital, Chicago, as a patient navigator. Here's her insight about the service and how it works.

"In a typical week, I see about 250 cancer patients, and 65 to 70 of them are new. Most of the patients are working part-time or not at all [due to the cancer]. Maybe they need help filling out the forms with FMLA [Family Medical Leave Act] and the disability forms, or verifying diagnosis and treatment.

Some patients have complained that their boss may be discriminating, but they are not sure. We always refer them to legal counsel. In Chicago, we have the Cancer Legal Resource Center, it's at Loyola Law School. They offer advice related to employment and insurance issues.

The majority of the patients…have a salary that is barely making the rent. Their concerns are mainly financial. If they are not working fulltime [anymore], they are not earning the same amount of money, of course, and their costs are escalating. These people were struggling before, but now they are struggling even more and they are not healthy.

I tell them, 'One day at a time.' When I meet with them, I tell them, I am going to be identifying barriers and hoping to alleviate them. The focus is on getting them well."

How to Find Patient Navigators

Among the ways to find out if your hospital or clinic or community has a patient navigator program:

• Ask your doctor if there is a patient navigator available at the hospital or clinic you will go to for treatment.
  
• Call the American Cancer Society toll-free number, 800-ACS-2345, and ask if the facility you are going to has a patient navigator.
  
• For a listing of the sites participating in the NCI program, go to http://crchd.cancer.gov/pnp/pnrp-research-sites.html