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.
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.
Read about the latest progress we are making as a Cancer Justice Network.