Cancer Care in a Hurricane
American history should teach us that nothing peaceful stays peaceful. The threat to the Affordable Care Act feels like another venture in betrayal of poor and minorities in our country. Is this act of repeal of Obamacare the new Jim Crow in health care, the reexperiencing of the Trail of Tears, and/or another chapter in the long story of slavery? Today, many millions of families are poised to step backwards in their healthcare: giving up their health insurance will be a challenge to their budgets, their bodies, and their beliefs in America. Healthcare is being taken away by the government without any replacement that has been discussed, understood, or agreed upon. Years of living with the fear of a major illness affecting one or more in the family now returns to the present conditions of existence. Hours spent in deciding whether to skip a meal or skip a prescription drug are now back with even more uncertainty. Thoughts of preventing illness through early detection, visits to primary physicians, or specialists is out of the question. The world of adult decisions about help is about to be turned upside down.
These changes effect me deeply. I have been part of a volunteer organization working to deeply reduce the amount of death from cancer in our poorest citizens. For the past two years, a great staff of physicians, ministers, educators, students, and community organizers have come together to offer cancer education and navigation to screening and treatment to poor people, the disabled, and minorities. We have met in wonderful churches offering free dinners and shared time to discuss the importance of early detection. Community centers have made room for us to introduce navigation as a new and vital concept to provide help to people confused by the healthcare system. Local foundations have stepped up to offer us monies to support our activities. Even a federal agency has seen the merit of what we are pioneering in terms of making sure every patient that wants help navigating the maze of healthcare gets that help.
We have heard stories from people about their fears about doctors who are rude, confusing, and without sufficient time.We have listened to people describe how family members have died because they did not get their cancers caught soon enough. Overall, the people we have met with in all of our conferences have been glad to see us, eager to sign up for exams, and interested in their general health being the source of discussion. Compassionate discussion with a doctor, a navigator, an ally can be a transformative experience for everyone.
We are continuing our meetings with churches and other social agencies to spread our one message: cancer, once detected early, can be stopped. Our group of Navigators are also going to stay in this process, bringing their passion for justice in health to our meetings. And, our beautiful health centers are continuing to see and help people wanting to be healthy, even as their workload is bound to expand. In short, we are going into this expected hurricane of opposition with the hope that we have the strength and resilience to withstand the mighty waves we are sure to face. I urge you to join us. Go to our website:cancerjusticenetwork.org for more information on our schedules, our phone numbers, and our efforts.
by Steve Sunderland
Overcoming the Threat to Health Care.
The threat to Obamacare stands in front of us like a ticking bomb. Unprepared for medical and drug expenses, millions of people are shuddering at the thought of returning to a time when the lack of good insurance could tip a family into financial disaster and psychological catastrophe. Not having financial reserves necessary for short or long term hospital stays, critical drugs, or repeated doctor visits, the person without health insurance panics: not visiting the doctor when there are warning signs, not going to the hospital until the pain is too great, and choosing a life of fear as the major alternaitive. Sadly, this condition, which may affect 30 million people next year, is too often the current conditions facing poor people in our community and country. Health care for the poor has been too little, too late, and too insulting. The poor are blamed for their illnesses, rebuked for costing the tax payer money when they attend the emergency room, and implicitly told that health care on any regular basis is not for them. And, Cincinnati is the cancer mortality capital in Ohio for minorities and the poor.
The poor do not really know that the US is the only major industrial power in the world that treats its people so shabbily. The middle class is waking up to the fact that the loss of their health insurance may plunge them into poverty and risky behavior. There are forces in our society, our community, and our nation that are working for health care of high quality for all, including the keeping of reasonably priced doctor, hospital, and drug insurance. My organization, the Cancer Justice Network is one of them. We have teamed up with over 20 social service agencies, two universities, medical students, nursing and social work students, and community organizers to offer free and high quality education about the steps to stop cancer in the lives of the poor. Over the past 3 months we have presented to over 500 people at dinners for the poor at Christ Church Cathedral, Madisonville Education and Assistance Center, and Churches Active in Northside. We have brought Navigators, trained volunteers, ready to take people to screenings at Crossroad Health Centers or the Cincinnati Health Departments clinics. Poor people have found their voice in terms of wanting to talk about their health concerns, rising questions and concerns to our Navigators about the steps to following through on exams, treatments, and surviving cancer. Thanks to many supporters, we will be expanding our efforts in the new year by visiting churches, schools, community centers, and agencies like the FreeStore Food Bank and St. Vincent de Paul. We are sending a clear message: "We are continuing to offer our services for high quality cancer care no matter what happens in Washington or Columbus. Your health is our priority."
We have found great and building support for our program of education and action. It shows us that, given a real chance, people can actively and responsibly join in better health care for all. Our volunteers have heard stories from people who are homeless, impoverished, and sick and also heard stories of people caring about their families, overcoming bad treatment from doctors and hospitals, to make a better life for their families. Learning about the resilience of people, seeing education lead to health-based action, and knowing that lives are being held in a compassionate embrace, has made us redouble our efforts. We know that the road to cancer care for the poor and minorities, in particular, is long. But we intend to navigate the surest and most caring way. For more information, please go to our website: cancerjusticenetwork.com
“It might be true no one is dying in the streets,” she says. “But the uninsured are dying younger; people’s life expectancy is affected, people’s ability to work is affected. These informal types of health care, as important as they are, actually help us not to see that.”
Read about Life in Obamacare's Dead Zone.
Our founder, Steve Sunderland, was nominated for a Community Health Advocate Award through the Center for Clinical & Translational Science & Training (CCTST).
The award recognizes an individual in the community working in service who has demonstrated leadership and a passion for improving health. Learn more about CCTST and the award at: https://cctst.uc.edu/programs/community/awards.
Steve's efforts have certainly advanced health and wellness in our community! Steve will be acknowledged at the Speaker Series Dinner and Award Ceremony on Tuesday, December 13, 2016!
"I was learning a lesson in cancer care. It is important to have someone you trust to help manage the case."
Tom Brokaw(2015). A lucky life interrupted. Random House.
1. Introduction: New steps toward improving cancer care for minorities are underway in Cincinnati. A network of organizations are providing the foundation blocks for compassionate care. They are planting seeds that are exploding in new hopes. People scared of seeing a doctor or going to a hospital to learn about cancer are now changing their minds and taking action. New settings, new relationships, and new opportunities for a personal health care discussions have begun. A bright light has been turned on. This article will explore the key actions and their implications for changing cancer care.
2. The Big Change Is Compassionate Care Through Navigation: In the past four weeks, over 500 low income people have received a form of cancer education that has emphasized the ways in which cancer can work and the necessity for early screenings to stop death. The educational process has been at dinner discussions in churches and community centers. Navigators, trained staff of the Cancer Justice Network, working with our medical director, Nemat Moussavian, MD, have provided a personal, thoughtful, and action oriented message at dinners. People, many for the first time in their adult lives, have had the opportunity of talking face to face with people who are caring about their health and survival. Their response has been to sign up for exams at Crossroad Health Center and to be accompanied to their screenings, if they want, by navigators. Previous barriers of denial about cancer's power, or, decisions to postpone seeking healthcare due to expense or poor treatment have been altered, and, clarity about survival through taking action has been initiated. People now realize that they need not be alone to face daunting obstacles to getting cancer care.
3. Why Navigation Works: Navigation has been effective because people have believed navigators can connect to the health systems in new and more effective ways. The first key of the navigator is to provide education about cancer at the person's level of interest and motivation. Sitting down over dinner at a church or community center and discussing the steps to finding out about cancer is an experience most people have never had. Cancer education has rarely been focused or presented in a way that personal questions and fears can be immediately addressed. Looking in the eyes of the navigator, hearing their concerns for the person's health, and realizing that the navigator will continue with the person, lights a new belief in health care. The conversation is only about caring for the individual's survival. The message the navigator is sending and that is accepted is: "You are too important to let cancer kill you. Take action. I am here for you, if you want help." Rarely in the history of health care has the poor heard such a message. Sadly, a powerful silence about cancer has been noticed by minorities and the poor, a "death silence" that is frequently the only message sent by the health profession. The navigator is aware of the prior experience of indifference and, in a short time, acts to change the framework for the meaning of caring.
4. Who Are the Navigators?: Navigators come from several different groups. Seven of our navigators are experienced community organizers. They see cancer education and prevention as an important addition to their work on community education, caring about wages and benefits for care providers, caring about mental illness problems, caring about the psychology of children needing help, or having experience supporting people with terminal cancer, and caring for children as nannies. Their prior experience adds a solid base for reaching out to people in church and community center dinners.
Also navigators are first year medical students from the University of Cincinnati. The desire to help has been a key reason for wanting to be a doctor. Nursing students from the school of nursing at Xavier University share similar concerns as do social work students from UC, and health communication students from UC, too. Over 40 people have been through an extensive training and have continued their education about navigation through individual and team approaches in our churches and community centers.
The mixture of very experienced community navigators with college students with varied ideas about navigation has led to a powerful approach to the idea of effective navigation. Each navigator brings both a personal experience about cancer as well as some professional understanding of how the health system is working for minorities and low income populations. Building trust, sharing opportunities to listen, offering assistance to cancer exams and to transportation to health centers, and recognizing how to accept when people do not want to proceed, makes up a warm continuing education of compassion.
5. What Kind of Training is Necessary For Navigation?: We wanted our navigators to understand the pioneering work in navigation of Harold Freeman, MD. Dr. Freeman, a cancer surgeon at Harlem Hospital in New York City, 26 years ago, realized that his patients were arriving too late for successful treatment due to the progression of their cancers. His approach to change was to identify, train, and hire people to be community navigators. They would connect to community organizations and seek to bring people to the hospital for exams at an earlier stage in the development of their cancer. Over 5 years, Dr. Freeman and his navigators dramatically changed the mortality of minorities. So successful was his program, that national studies were funded, and eventually every cancer hospital was required to have "patient navigators."
We also wanted our navigators to hear from people who were trained by Dr. Freeman and/or who had experienced navigation of a family member or friend. Our navigators heard from Dr. Anjanette Wells, a graduate of Dr. Freeman's training and a professor of social work at UC, from Sue Wilke who was a part of a team of friends that created a navigation process, and from Kiana Traube, an executive with the YMCA, about the navigation role she created to assist a family member. Their stories of creating new structures of caring around family and friends with cancer impressed us with their determination, creativity, and courage. We learned that navigators can be crucial in the survival of people with cancer.
We wanted our training to look into the area the emotions connected to cancer care. Chris Lottman, retired professor of social work, provided an in-depth review of how the emotions can be used in effective communication and relationships with people struggling with cancer. In small groups, we discussed the emotional realities facing navigators and people who are afraid of finding out about cancer. Chris helped us see that the "emotional intelligence" of the navigator is a key to building trust, sparking openness, and establishing a relationship that can endure painful moments.
Finally, we wanted navigators to understand and hear just how our medical director would present a brief talk on cancer and screening. Realizing that the presentation would be for average people meant thinking about what people, in general, needed to hear in order to begin a thinking process about whether cancer could affect them. Dr. Moussavian gave several talks that modified his presentation and prepared the navigators for key points that could be expanded in small groups at the dinners we expected to attend. We wanted to have Dr. Moussavian give valuable information to people considering a cancer screening without either scaring them or giving so much information that the person was drowning in detail. Most of all, our message should be that information about cancer is comprehensible and helps any attempts to fight cancer.
6. Where Does Navigation Occur?: The Cancer Justice Network is made up of over 20 organizations that serve the poor and especially minorities. We have started to begin our navigation process in those agencies that offer a weekly dinner and to join the dinner and add cancer education to the discussion. Christ Church Cathedral has had two meetings and one additional meeting is planned for the new year; Madisionville Education and Assistance Center has held one meeting and another is scheduled; and Northside Christian Church has held one meeting. Each meeting was an opportunity to be introduced by staff to the idea of cancer education and prevention. We have found two meetings at each agency to be beneficial. In the coming months, we will be at Southern Baptist Church and additional members of the Cancer Justice Network. (Please look at our website to see the full list of agencies:
7. What Have We Learned?: We have learned that by personalizing cancer education many people will be encouraged to take action and get a cancer exam. Sharing the idea of navigation, of accompanying people, is a new idea for people and we are looking for ways of suggesting this form of assistance that is readily acceptable. The most powerful learning is about the strength of compassionate discussion to trigger a desire to discuss personal and family health. Each meeting has been an opportunity to participate in discussions about family histories of caring that have sidestepped cancer or stories about deaths from cancer that might have been prevented. These insights have arisen because of the trust people have shown in our navigators and in the welcoming attitudes of Crossroad Health Center in the registration process. We are seeing the outline of a new kind of health service, a future in which caring is located in places where people feel warmth and caring as well as efficient connections to needed services. We are all learning that healthcare can be a positive and productive experience if navigation is genuinely offered.
by Steve Sunderland
"We can't refuse to be human beings. We can be unconscious, asleep. But to be awake is often just a simple matter of being willing to feel the connection, to feel the presence of more than our selves...We are obviously a part of something bigger than ourselves, and our health and well being are interdependent..." --M.C. Richards(1980). Toward Wholeness. Wesleyan Press.
On October 14, 2016 over 200 people, poor, minorities, families, came to the weekly free dinner at Christ Church Cathedral in downtown Cincinnati. At the over 20 tables were several members of the Cancer Justice Network, an organization that had visited a week before to provide cancer education. The tables filled as people waited to be called to a beautiful buffet prepared for the Church's "guests." Sharing cancer education in this setting is new for both the people who came for dinner and the "Navigators," the trained volunteers who had come prepared to have conversations about why cancer may be killing record numbers of minorities in Cincinnati.
We had learned the prior week that there appeared to be an openness to discussing health in general and cancer in particular. Our conversations were marked by an interest and a seriousness that suggested that health questions were on the minds of poor people. Now, they had another chance to discuss health and, if they wanted, to meet representatives from Crossroad Health Center, Molina Insurance, the Cancer Justice Network and to sign up for free cancer exams.
Discussing health in Christ Church Cathedral raised serious questions about how to understand the purpose of the dinner and the conversation. Many people had been to a prior dinner. No religious message was delivered or religious adherence was asked for by anyone. The action of giving a free dinner without any qualifications was seen as one way that the
mission of caring could be enacted. Now, though, the Cancer Justice Network was joining the evening meal and bringing a set of new questions and expectations of both attendance and participation in the dinner. Were people now required to discuss their personal health histories? Did experiences with cancer including family history suggest that a new requirement for attendance was being demanded? The Cancer Justice Network and Pat Coyle, PhD, of the Church worried about the mixed communication we might be sending and, with this new approach, whether we were undermining the purposes of the dinner.
Our goal was to co-create a learning experience with the people. We wanted to get to know people and to raise the concern that we had about preventing cancer from becoming a killer that went unregarded. Sadly, we knew that institutional health care had ignored the realities facing poor people by neither educating nor treating the increasing numbers of people with cancer. We knew that many people, prior to the Affordable Care Act, had never considered having doctors and hospitals that were responsive to their health needs. Cincinnati's hospitals were located in neighborhoods that had a twenty year less life expectancy for residents and the hospitals had no programs of education or treatment except the occasional health fair. But we were trying something new: a process of really caring about empowering people with knowledge about the danger signs of cancer and the steps needed for timely treatment. We wanted to follow a model program developed by Harold Freeman, MD, a surgeon, and developer of the navigation process. The key to this approach is that our navigators will both explain the realities of cancer, describe the importance of exams for early detection, and, importantly, accompany people to their exams and treatment. We wanted this new approach to change people's relationship to physicians, knowledge about cancer, and improve the likelihood of getting both an exam and, if needed, treatment. And, we want to save lives.
The results are starting to arrive. Some people at the dinner signed up to find out if they had cancer. They met with admissions staff from Crossroad Health Center, talked with Molina Insurance about the steps to getting insurance, raised health questions with our medical director, Nemat Moussavian, MD, and built the beginning of a trusting relationship with our navigators. (Our navigators were Pat Murray, Alison Love, and our first navigators from UC's Communication Department and Xavier University's school of nursing.) We will wait and see if this group follow through with their appointments and whether the phone contacts we have will result in deepening the relationship between navigators and those people attending the dinner. The magic of the dinner environment worked and, for the second week in a row, we saw many people signing up for exams, discussing their general health, and agreeing to follow up. The hour or so for dinner and conversation sped by like a lightening bolt. We felt the warmth of good conversations, caring starts of important discussions about health, and the acceptance of the offer of help to find out if cancer was present. About 10% of the people signed up; all were given a chance to discuss cancer or a health problem. Slowly, the concept of a navigator, an ally, to work with a person at a difficult time and perhaps with difficult conditions that prevent action by themselves, began to form. In an instant, the dining room was lit by flashes of compassion, by the bright light of hope, and by the illumination of a possibility of overcoming a lethal disease.
We are grateful that seeds of humanness were planted both in the navigators and the dinner guests. Once strangers just a bit ago was transformed, in part, into a the threads of a structure of compassion, a new form that required releasing hope from both sides. Questions remain about our efforts: Should our navigators take up regular attendance at these dinners in order to establish relationships that are ongoing?; Would the place for the navigators also be at the health centers so that people could meet them and have navigators team with people as the meet health professionals?; How will we know what has worked for the person and the navigator in such a short time period and, if we find out, is what is successful transferable to other settings for education?; and, can we start a movement of the people, by the people, and with the people to spread the word that cancer care is available with good doctors, effective treatments, and compassionate navigators? We will continue to find our way. For more information, please go to cancerjusticenetwork.org.
by Steve Sunderland
For the past two years we have pushing the ball of justice up hill for cancer justice. Giving poor people, minorities, disabled, and aged persons access to cancer care has been our major goal since we learned that this Cincinnati population has the highest cancer mortality in Ohio. We have built a cancer prevention organization of agencies that serve the poor and, gaining their permission, have formed a Cancer Justice Network. Included in were agencies and individuals that wanted to partner with us in providing primary care physicians, sites for free screening for cancer, assistance in obtaining insurance, cooperation in developing low cost transportation options to health meetings, and, last and most important, patient navigators to accompany people on every step of gaining access. We have volunteer navigators from the first year medical student class at UC; nursing students from Xavier University, communications students from UC, community navigators drawn from the aged population of social action agencies, and one graduate of the Harold Freeman Patient Navigation Training Program who is also a new social work faculty member at UC. (Go to the website to find out more information: cancerjusticenetwork.org) October 4, 2016 the ball moved: six navigators, two representatives of Crossroad Health Center, a physician, and the staff of the Cancer Justice Network were welcomed to the weekly dinner for the poor offered by Christ Church Cathedral. Here is how it happened: We arrived at 4:30pm to meet Christ Church Cathedral's coordinator, Pat Coyle. He led us into the church's library so that we could review which of the six navigators would go to tables where 8 people waited to be called for dinner. We learned that each navigator would have 4 tables to talk with about cancer prevention. We distributed binders and cancer education,papers, and stickers saying, "I Care About Cancer."
At 5pm people were coming into the large room of the church, the Undercroft, and signing in and sitting at one of 24 tables. After a few minutes, most of the 216 people were seated or getting a drink of water, coffee, lemonade and meeting new and old friends. Nemat Moussavian, MD, medical director of the CJN, was introduced and a hush greeted him as he began to discuss the definition of cancer and why it was important to get an early screening. The room was quiet and attentive. Steve Sunderland, PhD, director of the Cancer Justice Network, followed with a short definition of navigation as an act of friendship, introduced the navigators (Pat Murray, Pat Youngblood, Sue Wilke, Anjanette Wells, PhD, MSW, Allison Valentine-Love, Barbette Thompson) and supported the point that we were present to encourage everyone to get an exam. Jordan Oberdorfer and Lee Ann Russ, from Crossroad Health Center, were sitting off to the side at a table. They were prepared to sign people up for exams, primary care providers, and cancer discussions.
The six navigators were seated at different tables throughout the room, some joining their group as they went up to get a dinner, others meeting with people as they waited to be called. As people were going to the dinner line, Dr. Moussavian moved throughout the room, stopping at each table and discussing cancer, answering questions, and providing support. People, accompanied by navigators, began coming to Jordan and Lee Ann and registering for exams. This was the flow for about an hour.
The dinner ended a little after 6pm with some latecomers being seated and getting a dinner. The navigators continued to bring people to Jordan and Lee Ann and this connecting continued for the next half hour.
The navigators, the CJN team of Nemat Moussavian, MD, Robert Harris,DD and Steve Sunderland, PhD, along with church staff, Pat Coyle, MSW, and Frank McWilliams, MD, adjourned to a room to discuss their experience. We were joined at a little after 6:30 by Jordan and Lee Ann. We heard that 19 people had signed up and we were thrilled to hear this news. Overall, the navigators and the Crossroad staff had a very positive experience: building rapport, a trusting relationship didn't seem difficult as the people were open to meeting the navigators and seemed, in some cases, eager to engage in discussions about their health. People seemed to be in 3 groups, Anjanette Wells suggested: 1) people who didn't want to talk; 2) people who wanted to think more about whether they wanted to have an exam; and, 3) people who were interested and wanted an exam. We heard from the navigators that people shared their family histories about cancer and other health issues. Some people had physicians and some had insurance. The navigators reported that they liked having four tables of people to discuss cancer. Everyone could be talked with about whether they understood cancer and general health issues.
The key issue that emerged was follow-up. Dr. Moussavian expressed his belief that a momentum was created, a trust established, and an expectation for continued connection. For some people continuing to connect would be difficult since they didn't have phones, although some lived near Crossroad and could stop in. The navigators did get phone numbers of everyone they met with who wanted an exam. Following up, keeping the appointments at Crossroad, and assisting people with any barriers to taking action, were all seen as vital next steps. Pat Coyle asked: "Should we wait before coming back next week?" The overwhelming response was to return next week and build on the successful relationships established. We agreed to reflect a day on these points and then make a decision.
Overall, it was a deeply moving experience for both the people, the church, and the navigation effort. Our goal of linking low income people to cancer prevention and screening access was begun with gusto. The community worked with us and we responded in kind. The dinner was a perfect environment to share not only good food, but the spirit of friendship in facing cancer. The journey has begun! We will return to Christ Church Cathedral on October 11 for another sharing with the expected 200 people. We do expect to see some of the same people and we will want to find out if people made their appointments for screening and/or whether they will need further support. Most importantly, the good will of Christ Church Cathedral has now permitted a foundation for cancer education and prevention to both exist and be a key part of what we mean by justice. We will find out, in time, just how many people, going to an exam, found their cancer soon enough for effective treatment. And, also important, how many people learned that they are cancer free. Access to high quality treatment, good food, spiritual support, and good discussions are now a critical part of the health of the city.
by Steve Sunderland
One of our board members attended Harold Freeman's Patient Navigation Program in 2012. Here is Anjanette Well's reflection on the experience:
Attending Harold Freeman’s Patient Navigation Program in 2012, was one of the most influential professional trainings I have yet to attend! Dr. Freeman and experts went beyond teaching the core components of patient navigation practice, but also emphasized the need to understand patient navigation as a social justice mandate in healthcare. As a social worker and researcher, everything Dr. Freeman stands for resonates with me. I also see cancer disparities as more than a medical issue; but as a moral commitment to addressing the racial, economic, and gender inequities and injustices we see throughout healthcare.
Read about a successful navigation program in Philadelphia, Pennsylvania.
Read about the latest progress we are making as a Cancer Justice Network.