1. Introduction: For the past two years I have been working with a team of volunteers to close a gap in cancer care. The gap exists for patients that feel uneducated about the meaning of cancer, how cancer can grow without any known reason, how cancer can go from stage one, small and just beginning, to stage 4, the highest and most dangerous evolution of cells, how to get advice about taking steps to be examined and treated, how to face the reality of cancer with an ally that will help with obstacles, be they financial, be they medical confusion, and be they figuring out the insurance maze, and, especially having some confidence in the logistics of getting to and from cancer exams and cancer treatments. This gap is large and made even bigger by the general absence of medical direction for patients as to the right path. There is no clear road map for patients to either become educated about cancer or to find a doctor or to find an easy way to be transported to and from treatments.
Trying to fill this gap has been the pioneering work of Harold Freeman, MD, former president of the American Cancer Society and a surgeon. Freeman reviewed the death rates of his patients and realized that too many came too late to be treated; their cancer had progressed to stage 4 and his skills were not able to be used to stop the uncontrolled growth of the cancer. He refused to accept this reality. His approach was to identify community workers who could visit in the community and convince people to come early in their potential development of cancer. Over five years, with his team of people he called, "patient navigators," he was able to reverse the death rate from 70% dying to 70% living. Early exams for cancer led to catching the cancer in time for treatment. Freeman's program gained national recognition and is now a part of the accreditation of every cancer hospital. Freeman's research and publication of his achievement, now over 30 years, is still seeking compliance. Sadly, "(m)ore than a quarter of Americans and Europeans who die before the age of seventy five would not have died if they'd received appropriate medical care for their conditions, most of which were chronic." (A. Gawande(1/23/17). "Tell me where it hurts?" The New Yorker.)
I started my program when two members of my family contracted cancer. During the search for treatment, I came across the work of Freeman and wondered why no physician or hospital had connected us to a navigator. I checked with the leaders of cancer programs and heard that, while they had heard of navigation, their hospital did not offer it...yet. I also wondered about the confusing choices we had in my family and I inquired about the decisions that are facing newcomers to health care insurance who probably didn't know the realities of cancer. Again, I learned that that no programs existed with the hospitals to educate the general population, or the low income population in specific, about the importance of early screening. I called Dr. Freeman and invited him to Cincinnati to meet with hospital staffs and discuss his method of reducing cancer death. Dr. Freeman came and delivered a powerful talk about the success of his program. Accompanying him was a researcher from Ohio State University's James Cancer Hospital, Electra Paskett, PhD, that affirmed Dr. Freeman's research with a review of navigation programs from around the nation. Navigation worked, navigation was a requirement for accreditation of cancer programs, but navigation was no where to be found in Cincinnati. A group of Cincinnati citizens sought to change this situation.
2. Cincinnati's pioneering navigation program: Today, there are 50 navigators a part of an organization called, The Cancer Justice Network. These navigators have been through a training program that followed many of the ideas developed by Dr. Freeman. We have volunteers from the students of the UC medical school, a faculty and students from the UC school of social work, UC's health communication department' students, Xavier's students in the school of nursing, and a group of community organizers. Also volunteering is our medical director, Nemat Moussavian, MD, five physicians as primary care providers, and partnerships for screening with Crossroad Health Center, the Cincinnati Health Department's health centers, Cris Collinsworth ProScan, Jewish Hospital's Woman's Center, and 20 human service agencies, including the FreeStore Food Bank, Christ Church Cathedral, Madisonville Education and Assistance Center, Churches Active in Northside, St. Vincent de Paul, Hamilton County Developmental Disabilities, and others. There is a board of directors headed by Robert Harris, DD, and a website: cancerjusticenetwork.org/ We visit these churches and human service organizations and introduce cancer education and the need for early screening. Over 600 people have been involved in our programs since October, 2016.
3. What does a navigator do with the patient?: The navigator, a free volunteer, helps the patient with their mobility to early screening and timely treatments. Figuring out how to get to and from screenings and treatments has been a major obstacle for Cincinnatians and now there will be assistance in transportation. Equally important, is the gaining of some critical education about cancer and the way cancer can grow and, in some cases, kill people. Navigators have information from the American Cancer Society as well as access to our medical director. At meetings, in churches and human service agencies, questions can be asked about family history, or any topic that relates to the health of the patient. The navigator will connect the patient to physicians at the health centers for more in depth discussions. The navigator will accompany the patient, if wanted, through each step of the educational and treatment process. In sum, the navigator is the patient's ally as they navigate what is too often a confusing and fearful process. In this way, following Freeman's approach, we hope to change the death rate in Cincinnati and spread the word that cancer, caught early, may be a curable disease.
4. The pain of Stage 4: My brother's colon cancer has existed during the same time as the development of the Cancer Justice Network. He is a powerful teacher of the realities of facing cancer, logistically, financially, and psychologically. He is a convincing advocate for navigation even though no hospital he works with has a navigator program. Thankfully, he had sufficient funds to hire an independent physician to review all of his records and the suggestions for treatment. He has been Stage 4 for the past two years and has learned that he is his best "navigator." He has taught me that the patient's full participation in their own treatment, review of records, consultation with resources, and friendship are critical factors in surviving this difficult stage. His physicians have missed too many elements in his case to give him the feeling that they truly understand his condition. Or, that they are convinced about what are his next steps. Facing the unknown about his disease and treatment, he has demonstrated a good sense of humor, a healthy dose of skepticism, and a dogged review of research. These are key factors in his survival. Yet, the unknown can also deliver a terrible punch to the emotions as numbers indicating the spread or cancer continue to rise and confusion exists about appropriate steps. In our daily conversations about next steps, we are reminded that navigating can be an emotional roller-coaster. We are never prepared for the next twist or turn, whether good or bad. But, and this is the key, partnership between us reduces fears, builds courage, lightens the load of depression, and reminds us that our love cannot be broken by the disease. Being a navigator means venturing out into the unknown and without the certainty of a happy ending or even the reduction of pain. Facing, together, many of these horrors, makes my emotions a bit stronger and, I know, strengthens him as the road continues without a road map.
Navigation is critical for the survival of people's emotions and the logistics of managing a very difficult disease. The lessons from my personal experience mirror the realities of Cincinnati. The gap of isolation, confusion, false suggestions, and medical avoidance must be changed and filled out in a different way by navigators. We continue down this path, helped by many friends, and agencies, and toward the development of a realistic expectation for all cancer patients: you will have a friend, an ally, a co-manager, and a critical person we call a "navigator."
by Steve Sunderland
Read about the latest progress we are making as a Cancer Justice Network.