One of the main characters in August Wilson’s play, “Two Trains Running,” is a person called “Hambone.” He repeats the same line for two acts: “I want my ham!” Hambone has been wronged 9 years earlier by a shopkeeper. Hambone was promised a ham if he painted a fence to the satisfaction of the owner. He didn’t. All Hambone wants is justice and that is all he is focused on, day after day. Hambone also represents the many people in Pittsburgh in the ‘60s that were poor, unemployed or marginally working in a declining neighborhood. Wilson gives voice in a simple and straightforward way to those in the neighborhood, largely African American, who keep finding the “rules” changing and with little chance for justice at any level.
This character reminds me of too many of the people we see at the senior centers, Over the Rhine, Booth, and St. Paul’s Village, and at the dinners for people who are poor at CAIN’’s North Church, Christ Church, and St. Vincent de Paul. Rarely, are their voices heard above a murmur and even more scarce is their complaints about the lack of justice in the health care system. What we do as Navigators in seek to change the relationship by being present for discussions even if there is a fear of talking. Being present means offering a guidebook to going into the system even though there are scary stories of what happens when a person who is poor and sick crosses over into the hospitals. Providing resources, including accompaniment, seems critical if the past obstacles and present barriers are to be overcome. Grudgingly, we find a few people who, in one way of another, say: “I want real healthcare!” Together, we walk to the transportation that is provided by Cincinnati Area Senior Services(CASS) and we enter a world with more rules that are puzzling than can even be imagined.
This week we met with many people wanting to change the system and join our Commission on Cincinnati’s Health Inequities. So many people has stories about people being lost on the way to health care, or rules that prohibited people being able to buy their drugs or see a dentist. We also met with people, Kate Bennett, who are veterans of the systems, who understand the subtlest of meanings in the “rules.” Slowly, thanks to more understanding we are seeing the paths to healthcare for our “neighborhood” more clearly. Hambone never gets his ham from his former employer. Instead, a new friend, named “Sterling,” places a ham in his coffin. This is not justice. But it is an act of compassion. We are doing better and not enough. Let us all chant: “I want my healthcare justice.”
Out of the headlines, a wonderful story is happening in Cincinnati. Thousands of low income citizens , minorities, people with disabilities, and aged are learning about healthcare, signing up, and thinking about health and the prevention of disease. For the first time for many people, a real choice for personal and family healthcare has arrived. Since January, 2017, the Cancer Justice Network has met with over 2600 people in churches, community centers, and at health fairs. Very slowly, a trust is being established, a belief that people who have not had health care can get assistance in both receiving screening and treatment. We have focused on cancer but our concern includes all chronic diseases. Now, this positive beginning is being threatened by a president and a Republican congress that wants to wipe away all of these gains. This policy of going backwards must be stopped. Will it?
1. Making sense of the new health bill and the budget: The gigantic slashing of the present health care legislation plus the new budget reorganizing of the government's programs are a clear warning that the enemies of "Make America Great Again" are to be weakened and eliminated. It'd is hard to believe that in the 21st century, an American leader is returning to the principles of authoritarianism or worse. I have to pinch myself each morning to recognize that the nightmare that is looming is happening when the American economy is restoring itself, the stock market is at record highs, and more Americans have health care than ever before. Yet, the resentment of a large part of the country is accurately represented by the president and the Republican congress and the focus of the bitterness is not on the insurance companies that are pulling out of the healthcare market places, or the CEOs that are reaping the rewards of radical tax cuts, or even the the president's outright lies about so many things. The country is on the way to blaming and hurting the poor, the minorities, people with disabilities, the immigrants, those with prior medical conditions, students with loans, veterans seeking mental health support, and anyone who stands up for the most vulnerable citizens in our community.
2. Making sense of the attack on healthcare: The threads of hatred for the poor and minorities have long been expressed in statistics about the radical difference in life expectancy for rich and poor. In our own city, there is a 20 year gap in mortality based upon where you live. Even neighborhoods that adjoin each other, if they are characterized as "rich" or "poor," show dramatic differences in life chances. And, in those communities near our hospitals, the 20 year gaps persists without any programs of education or outreach to alter this reality. America's history of segregation in education, transportation, and housing is finally being exposed with the expected results showing that governments, local, state, and federal, have combined to make life difficult for minorities, immigrants, the aged, and people with disabilities. The lack of fair housing, adequate and affordable transportation, and integrated high quality education has created and sustained a massive imbalance in fostering a good life. Added to these destructive layers of governmental inaction or attack on the poor, is the persistent and "normalized" expectation that the poor, or minorities, or the aged, or those with disabilities can exist with substandard or non-existent healthcare. The new proposed laws that bring back the old prejudices about excluding the poor are nothing new to our community members who have sought some high quality of care that is within their financial means. The major exception was the implementation of Obamacare. Groups, previously excluded were now invited to join health care programs that gave healthcare for previous conditions of ill-health, subsidies for paying for healthcare, education in how to use a primary care provider, and a chance to bring everyone into the healthcare circle of support. A stumbling start of the program followed by suspicions about participation slowed the full acceptance of this program until recently. Now, the current legislation rolls away this provision and 23 million citizens will lose their "place" in healthcare.
3. What about those citizens with chronic health problems, like cancer? Will they be able to continue their treatments if they have started treatments? Thanks to the work of cancer treatment pioneer, Harold Freeman, MD, former president of the American Cancer Society and a surgeon at Columbia University and Harlem Hospital in New York City, a process exists to educate high risk individuals and to offer assistance to involvement with doctors for screening and treatment for cancer. Dr. Freeman has developed a process of "patient navigators," healthcare workers that reach out, educate, and accompany people to their screenings and treatment. Dr. Freeman has been fully aware of the low expectations of high risk individuals for care and sought to overcome resistance to healthcare through identifying people who were trained to listen and act in the best interests of the patient. In five years he was able to alter the survival rate of his patients, improving their chances for life from 30% to 70%, by using navigators. Dr. Freeman was invited to Cincinnati, met with hospital staff, and with the Cancer Justice Network. Based on his work, and the reluctance of all the hospitals to initiate a navigator program that reached out to the community, the Cancer Justice Network launched its program with the support of 25 human service agencies that serve low income people, people with disabilities, minorities, and the aged. This is the only navigation program in Cincinnati. Our volunteer organization has navigators dedicated to following the principles of Dr. Freeman's program. Each week we visit a church, a community center, a school, or a health fair, and share our information, introduce our navigators, and give each person a "road map" to screening and treatment.
People who sign up with us are agreeing to trust that our efforts will bring them into a process that a respects them, offers education about the healthcare process, and accompanies each person through the maze of healthcare options. Now, the political threat to the Medicaid program, the violent attempt to close the Affordable Care Act, and the ambiguity about preconditions, threaten to topple our tiny steps at establishing a compassionate healthcare process. As of today, the continuity of care can exist because the Affordable Care Act still exists. But, the current policy revisions would devastate both access and continuity of care, if approved by the president and congress. We can no longer assure people that if, cancer, or diabetes, or heart disease is found through screening, that they will receive full treatment or any treatment. Hospitals and doctors do not have emergency funds to use to offset projected expenses. The high risk population is just beginning to understand that early testing is the key to life, longer and better life. They want to know: "Will my healthcare be there when I need it?"
4. The long battle for justice in healthcare continues. The Cancer Justice Network will continue to offer programs of education about stopping cancer. We will join protests that indicate that support for quality healthcare is irrelevant to the country's future. We will be in alliance with groups seeking to keep Medicaid, affordable care insurance, support for people with disabilities that assists their living conditions, comprehensive programs for the aged that increase respect, and affirmation of transportation programs that increase mobility. We will also work with doctors and hospitals on their continuing efforts to make healthcare a right. Back in 1971, policy makers and practitioners faced formidable challenges from the medical and hospital associations: "Perhaps the basis of the entire problem, among both doctors and poor people," W. Brooks wrote, "is that they still think of health care as a privilege and not a right. (W. Brooks, "Health Care and Poor People," in Citizen Participation: effecting community change. Praeger. 1971). We have found a group of doctors, nurses, social workers, students, and NAVIGATORS that are passionate about the health rights of high risk people and we see where national health organizations are opposing the new legislation. We are finding a large group of low income citizens that appear to be changing their ideas about working with us to stop chronic disease. Together, in the coming weeks, we will make our voices and votes known.
by Steve Sunderland
1. Healthcare in jeopardy: The US House of Representatives has passed a bill that calls for the radical cutting of Medicaid funds to the poor, and, devastating cuts to provisions for the elderly and people with disabilities. The president and the Republicans celebrated these changes in the White House Rose Garden as the shadow of dire need fell across millions of people. No one knows, yet, just how many millions of people will be negatively affected or how many people with pre-existing conditions will lose their care, their doctors, and, eventually, their lives. The elderly, in and out of nursing homes, will lose vital options for care. Veterans will face even more obstacles. What is to be done?
2. The work of the Cancer Justice Network: Cincinnati is the cancer death leader of all of Ohio for minorities, people with disabilities, and the aged. Currently, the Cancer Justice Network is the only local program that educates this population on both the realities of cancer and the necessity for early screening and treatment. We visit with the people who are attending free dinners, or community health fairs, or educational meetings and invite them to get immediate care through taking people to health centers for exams to determine if they have cancer. Our program has "navigators," trained staff who are ready to accompany individuals and their families to doctors, nurses, hospitals, and screening centers. We are free because we are volunteers.
Most people we see are afraid of cancer and even more fearful of going to physicians and hearing the horrific words, "You have cancer." In the past, negative thoughts about costs have been used as a reason for not going. Or, transportation to and from health centers, hospitals, and doctors' offices has seemed too bewildering. And, once some brave people have visited a doctor, they have been treated as if they were sub-human and ignorant. People have said to us: "I'd rather die than be treated so badly again."
Our program seeks to rapidly change the access to health care by providing an ally for the person on the whole journey, from the dinner to the health center and, if necessary, to the hospital for treatments. We want to have everyone transported with confidence that they can master and afford the trips to the health care centers and, once there, understand what their health status and, if necessary, get treatment that is timely, compassionate, and successful.
3. Obamacare still exists: The new legislation does not replace or modify the Affordable Care Act or Obamacare. Yet. People can still get insurance that does not discriminate against them because they have a prior health condition like diabetes, cancer, or heart disease. Our navigators can still take people for exams and treatments that are covered by Medicaid and Obamacare. We will continue our programs until there is a new law that prohibits people getting insurance. We will continue to visit dinners, health fairs, and educational settings and invite people to join us. We will find transportation that is easy, direct, and accessible for people wanting an exam and treatment. And, we will fight for the maintaining of every caring aspect of health insurance that assists people in fighting cancer.
4. Next Steps: We need to continue to march for justice in health care for everyone. Included in standing up for cancer justice is to also take our health seriously and not let our president and the Republicans decide that our population, our low income individuals and families, our people with disabilities, and our aged, are unworthy for full and rapid treatment. We have many allies in this struggle: doctors, hospitals, insurers, civil rights organizations, and the average American. Take cancer seriously and take action with the Cancer Justice Network. We are joining hands and we will resist this attempt to kill the poor and those most vulnerable in our population.
By Steve Sunderland
This article will appear in a forthcoming issue of Streetvibes, a newspaper of the Cincinnati Homeless Coalition.
By Kate Becker, Boston University Today
Vital Signs: Racial Disparities in Age-Specific Mortality Among Black or African Americans - United States, 1999-2015
By Timothy Cunningham, Morbidity and Mortality Weekly Report (MMWR)
By Ahmedin Jemal, Journal of National Cancer Institute
The attack on the poor's healthcare continues with new cuts in Medicaid insurance ordered by the Secretary of Health and Human Services. Poor people, just now awakening to the realization that healthcare can improve their lives and the lives of their families, will be deterred from getting critical insurance. Bombing healthcare provisions has the same effect as bombing people and buildings: people will unnecessarily die, suffer, and be frightened about their future. Citizens at many town hall meetings, largely middle class people, are outraged at their Congressional representative's attempt to explain why less benefits, fewer choices of physicians and hospitals, and the abolition of prevention results in "better care."
The American poor are being joined by the American Middle Class in protesting changes in healthcare that are ridiculous for any person who wants to feel secure about their health. Protests have been the order of the day, whether at local, state or national rallies. The Congress has heard and backed off a sad and destructive bill to replace the Affordable Care Act. But Trump is not finished: choking the ACA to death can happen through arbitrary and undiscussed rule changes.
Simultaneous with the attack on the poor, are efforts to widen access to healthcare for everyone. Physician groups, Hospital Groups, and Citizen Groups are joining together to both resist major changes and to rethink just how the healthcare system can be improved for those at highest risk. It is hoped that this effort will continue despite the new rules and the old attitude that healthcare cannot be a right for everyone.
In Cincinnati, the Cancer Justice Network, an organization of 25 agencies that serve the poor in the city and Hamilton County, have come together to step up the healthcare services to the poor. Using a new health role, "navigators," the Cancer Justice Network is going to churches, community centers, and schools where poor people and their families attend. Our goal is singular: we want everyone who is concerned that they may have cancer to get a screening and a timely treatment. Thanks to far-looking grants from Easter Seals and the National Aging and Disability Transportation Center, Molina Insurance, Christ Church Cathedral, Congregation of St. Joseph, Academy of Medicine, and the Woodward Trust, we are creating a transportation process that "navigates" any low income citizen, aged person, or person with disabilities, to and from cancer prevention healthcare. Normally, the high risk population we are working with has too many transportation obstacles to get to either a screening and or regular treatments. Not being knowledgeable about insurance provisions for transportation or Medicaid stipulations, the person with cancer may give up and choose to use their limited funds for housing, or food, or some recreation for their children. Removing transportation hurdles, accompanying the person to and from their health provider, starts a process that could lead to overcoming cancer in our community.
The process can break down at any time if there is an emergency in the person's life or if they are unsure what to do when they have an urgent medical need. Often people do not have a doctor, do not know how to access the Emergency Room, and sadly have had experiences of being humiliated by healthcare professionals. Our navigators are offering a different kind of relationship: we will go with the person and make sure that the healthcare is outstanding and we will help people negotiate the maze of cancer care and of the local transportation systems. When we have shared this opportunity with people at church meetings or in community centers, we are often met with disbelief: "Why would you do this for me? What do you get out of helping me?" Suspicions connected to prior experiences tend to dominate even when we have face to face meetings with kind and down to earth physicians. Yet, every time we find courageous people who are willing to risk a first step with our navigators, although many people have a change of mind. The power of the anti-poor culture can win out and persuade people that what we are sharing may be a scam. "Who helps the poor?," they seem to say with their behavior of missing appointments.
We know that our process of helping will be a slow one but we are basing our work on the pioneering efforts of Harold Freeman, MD. Freeman, facing high death rates from his patients who came too late for treatment, created a program of community navigators that could bring people to him much sooner in their cancer. In five years, Freeman's program reversed the death statistics: most people survived their cancer. We are following this program in Cincinnati because minorities have the highest death rate from cancer in Ohio. The Cancer Justice Network is the only program that navigates high risk populations to and from healthcare while empowering people to take more control over their healthcare. Largely made up of volunteers, we attend church dinners, meetings at community centers, and programs where the poor come for help. Our navigators are saying that there are more choices for life than death if we seize the chance to get an exam and treatment. We know we have a difficult job to convince people who have been excluded from healthcare, stigmatized by the media, and now facing certain cuts in their essential healthcare. We are determined to make progress by taking time with people, listening to their fears, and, with navigators, going the extra mile to compassionate healthcare. This is what we mean by justice for everyone. Please go to our website for more information: cancerjusticenetwork.org
by Steve Sunderland
This article will appear in a forthcoming issue of Streetvibes, a bi-monthly newspaper published by The Cincinnati Homeless Coalition.
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
Steve Sunderland, the administrator and his team including a doctor, a nurse and several navigators of the Cancer Justice Network (CJN) met on Monday, January 30th with people who came to the Northside Presbyterian Church. The primary purpose was to empower the people by providing information on various types of cancer, screening locations and to encourage and offer them assistance in signing up for cancer screenings if they desired. During the event, the doctor spoke to the group at large concerning different types of cancer and encouraged each, if they had not done so, to sign up to receive a screening. Two people from the group shared their experiences with cancer. I was particularly touched by one woman’s story because she was in tears as she shared how a loved one had died with cancer. Her body seemed to shake as she pleaded with people to be sure to take the opportunity to get a screening.
The nurse emphasized the importance of screenings and informed the group of several screening locations. After which, the people were asked to consider if they would like to sign up for a cancer screening. If so, they were instructed to raise their hand and were told a navigator would assist them with the process. In the meantime, navigators became group facilitators at each table with a small group of people. The navigator’s role became one in which each person interested was engaged with them in a question/answer session. My observation concluded that the people gathered there were given information and resources and were encouraged to value their health and themselves enough to at least think about getting a cancer screening. The navigator at my table even offered to help find transportation, check with them on their insurance, and go with them to the screening if they needed her to. In my opinion, this community service is one that could help diagnose cancer in its early stage; therefore, it would allow treatment to be administered with the possibility of many lives being saved from death of this disease.
The CJN program has great potential to reduce the death rate of cancer victims through early detection. The success of CJN will depend upon the community working together to provide workplace and/or neighborhood meeting venues, , transportation, childcare, and diverse advertising that will help reach low income, minorities, persons with disabilities and senior citizens. In addition, it will be important for the health professionals to become passionate about CJN’s program and sign on as part of the team which, I believe, will also reduce the fear of individuals going for cancer screenings. Individuals who choose to take advantage of CJN will greatly benefit through the following services:
Individuals who take advantage of the CJN program are apt to share this information with their loved ones, friends and neighbors; thus, CJN’s program has the potential to save the lives of many.
by Annie McEachirn Carson
We have received funding from the National Aging and Disability Transportation Center. Learn more here.
Read about the latest progress we are making as a Cancer Justice Network.