The numbers of U.S. dead is above 67,000 people. Many are seniors, too many are minorities, people with disabilities, and the poor. Is it too soon to be open for “normal” life? What can it mean to be “open” and “normal” at this time? The Cancer Justice Network has been thinking about the great needs of our friends that we have not seen at the church dinners for the homeless, or the health and senior centers, and at the health fairs. For a brief moment last week, there were many national news stories about the unequal results of the virus in these populations. The country “woke up” to the reality that there are large numbers of the general population that are dying in greater and greater numbers due to the standard reasons: lack of access to health care; no firm relationship with a primary care provider; no outreach to the poorest communities that have experienced the greatest mortality; reduction of food on a regular basis; the loss of even low incomes; and, the failure of the culture to make health care for all a priority.
> The Cancer Justice Network believes it is not too soon to consider a major reorganization of the systems of healthcare in Cincinnati. Going back to more and more mortality or a deepening of the health crisis for people of high risk, is unacceptable to those of us who are hoping for changes that both improve the specific health of those in greatest need and a recognition of the health needs of the entire community. This pandemic has shown that the health care system is fragile for everyone: people of all income levels have had to face hospitals with inadequate equipment to protect the physicians and other health care workers as well as dangerous occupational roles for transit, grocery, and emergency response staff. It is clear that no one is safe and no one is insured good health care and, most sadly, no one is in charge of raising the standards for community health care improvement. The governor has made courageous choices to close most of the state but his choices now seem under attack as thousands of citizens are forced to be out of work, encouraged to remain at home, and frightened about the necessity to suspend social relationships during this time. Our mayor and health commissioner have also followed up with similar warnings that are aimed at frightening the population into a major change in all social contacts. Overhanging all of these orders is the threat of long term unemployment, no healthcare from employers, reductions in pension incomes, and the increasing possibility of both limited employment and dangerous participation in local society.
> Now is the time for ideas to be shared about a rethinking of healthcare in Cincinnati. First, a commitment needs to be made from the hospitals to set up health outposts in those neighborhoods of greatest mortality. Hospitals should be provided with protective equipment as they establish centers for testing for the virus as well as expanding their exams to other chronic diseases. The UC Medical, Pharmacy, and Nursing Schools need to be rethought as an ongoing assistant to these efforts, with medical, pharmacy, and nursing students joining teams of physicians to provide in-neighborhood exams and treatment. Eradicating the virus’s present invasion will need to be followed up for the rest of the year with more exams, given more often, and with greater success in welcoming the highest risk populations. The Cancer Justice Network needs to expand its staff of Navigators to accompany these teams of healthcare personnel, taking appropriate precautions to insure Navigator safety from the virus. Moreover, a Center for Community Navigation, with the capability of telemedicine, will need to be established and broadcast on a weekly basis to the community. This Center will update the community on what is happening in neighborhoods as well as provide Navigator-in-training classes that can be taken on-line. Navigators, both in person and on line, will need to work within the communities to encourage exams and retesting as well as participation in the follow-up for treatment and contacts with infected citizens. An army of trained Navigators, expanded to every high risk neighborhood, connected to different hospitals and health centers, visiting via television and in-person and face to face meetings at dinners and health fairs, will make a substantial impact on stopping the virus’s spread and, importantly, the slowing the killing of vast numbers of high risk citizens.
> Yesterday, my wife and I visited a Hamilton County park. Dozens of families were out to enjoy the warm weather and the beautiful surroundings. Yet, no one had a mask on and no one reminded the population that lives were at stake. I wondered just what it will take for our community to accept that they are “Navigators” of public health and that their citizenship, if they want to raise the possibility of living, will require a different kind of action. The first stage of the virus coming to Ohio has been shocking; now, with gentleness for the difficulty involved in protecting the community, with recognition of the anger at the leaderless figures in our society that are watching as the local and regional economy is disappearing, and, with compassion for those families that have had a death or have had to postpone healthcare, a new path must be discussed and, with agreement about Covid justice for all, taken as soon as possible.
The Cancer Justice Network has been on hold since the advent of the Covid 19 pandemic. Our regular work of visiting people with a high risk for chronic disease at North Church, Over the Rhine Senior Center, Christ Church Cathedral, Booth Retirement Community, St. Vincent de Paul, the Bobbie Sterne Health Center, Crossroad Health Center has stopped. Navigation has been defined as being in the community, working face to face with people who are low income, homeless, minorities, people with disabilities, and seniors. The requirements of the State of Ohio to stay home, to avoid meetings of 10 people, and to close congregant meeting places, has removed the essential trust building ingredient of the relationships with our “friends.” Added to this radical change, is the total focus of the hospitals and health centers on testing and treating the Covid virus. Navigating people to cancer exams, dental visits, and vision exams is no longer possible according to these rules.
“Even in the worst of times, such habits sustain, protect and in the most unlikely way, lift us up. I cannot think of a more compelling reason to foster the creative habit.”—Twyla Tharp and M. Reiter(2006). The Creative Habit: Learn it and use it for life. Simon & Schuster.
“I’ve often been down in the dumps, but never desperate. I look upon our life in hiding as an interesting adventure, full of danger and romance, and every privation as an amusing addition to my diary. I’ve made up my mind to live a different life from other girls, and not to become an ordinary housewife later on. What I’m experiencing here is a good beginning to an interesting life, and that’s the reason—the only reason—why I have to laugh at the humorous side of the most dangerous moments.”
NAVIGATING THE CANCER JUSTICE NETWORK: NAVIGATORS AS PPE
Ten months Matthew came into our world. He looked very small having arrived three month early. Thanks to the caring of many people, parents, friends, doctors, nurses, and colleagues he is, today, a fat little guy with big smiles. He is also crawling. Nothing normal about this reality: compassion was woven together by so many people as they saw in this little person a chance for life.
Also, this year Mary got her first glasses in forty years, thanks to our Navigators and the friends at St. Vincent de Paul. The smile on Mary’s face stretches across all of Over the Rhine. Cliff, a spry 75 year old, is also grateful for having his teeth cleaned and appreciative of the dentists at the Cincinnati Health Clinic for such good care. He a glad citizen of the West End. Barbara, overcoming her fear, trusting a Navigator, had her first breast exam in 30 years. No cancer was found and a great sigh of relief was heard throughout Northside.
All of these wonderful events were kind of a birth. We witnessed the new experience of peace in people who had little hope that medical care would be available. Trusting Navigators, they were transported to a new experience: respectful healthcare. Throughout the city of Cincinnati we meet people who smile at us with a kind of delight as they now know that we are just a part of their beginning a solid relationship with a physician, a nurse, a physical therapist, a dentist, and a community health care worker. Like Matthew, they have been invited into a community of compassionate action. They all have friends that are linked to them as guides to present and future health problems and concerns. Navigators have formed partnerships, a kind of hug, that supports and cherishes the whole person. We are all growing in this community of love, grateful for the support of so many “grand folk” like OKI, Congregation of St. Joseph, Over the Rhine Senior Center, North Church-CAIN, First United Church of Christ, Christ Church Cathedral, Booth Retirement Community, St. Paul’s Village, the Cincinnati Health Department, St. Vincent de Paul, and Crossroad Health Center.
Matthew, Mary, Cliff, and Barbara have reminded us about how fragile life is and how important it is to take action for health when we can. Very sadly, we attended the annual event that remembers the homeless people that have died this year. Organized by the The Homeless Coalition, we stood in a circle in Washington Park and read over 100 names of people who died this year. One was a child of two. How many died because they couldn’t reach out to a Navigator, or that they didn’t know warning signs of ill health, or that they just had no one to help them on their efforts to stay alive? This year we want to increase our efforts to reach seniors who have had little or no health care, and touch base with people with disabilities that might want to see a dentist, and with people who are poor and need an eye exam and glasses. We know that with greater effort, we can reach even more of our friends who are lost and confused about how to navigate our health care system. We want to celebrate life for more and more people, helping them find their first “steps” to kind health care.
If you can, please send a check to Cancer Justice Network, 4129 Georgia Avenue, Cincinnati, OH 45223. We can expand the circle of hope with your continued help. Thank you.
Partnerships have been key to the development of the Cancer Justice Network. Our partners have allowed us to attend weekly dinners, weekly health meetings, and weekly meetings at senior centers. Over time, this trust in our work has led to an increase in citizens taking advantage of meeting with our Navigators for discussions of cancer in specific and health in general. Through these partnerships we have expanded our discussions to include both cancer prevention and dental health as doorways to a person considering that their healthcare can be taken seriously and, by implication, their lives can be improved. Thanks to the partnerships, we are now the largest cancer prevention organization in the community. People have realized that prevention has meant going, often with us, to exams to see if they have cancer or some other life threatening disease. Having predictable, safe, and accessible transportation provided by our partnership with Cincinnati Area Senior Services(CASS) has raised the possibility that people with low or no incomes can be navigated to health care. Having access to the Cincinnati Health Network and the Cincinnati Health Department’s Health Centers have opened up a visible road map for cancer care and dental exams.
Our partners have connected with us to provide a next level of health care access. Adding to regular dinner meetings a health emphasis has made for new connections for people wanting to take action on their health needs. We are grateful to Churches Active in Northside(CAIN), First United Church of Christ, St. Paul’s Village,Christ Church Cathedral, Booth Retirement Community, and Over the Rhine Senior Center allowing and encouraging us to share health information at their dinners and breakfasts. Similarly, we appreciate having access to outstanding health centers, especially Crossroad, the Cincinnati Health Network, and the Cincinnati Health Department’s Health Centers. These locations have also allowed us to expand and focus on dental health and we are especially happy with our partnership with UC Blue Ash’s Dental Hygiene Program. St. Vincent de Paul’s efforts to improve health via the UC Open School Program has also invited us to weekly participation. And, the Public Library of Hamilton County has seen it desirable to offer our program at their downtown branch.
Changing the culture of health for our population requires a different attitude from health providers and we are happy about our partnership with the nursing schools of UC and Xavier and with the medical, dental hygiene, pharmacy, and physical rehabilitation students of UC.
Finally, we are in partnership with Ohio, Kentucky, and Indiana Regional Planning(OKI) and with the Congregation of St. Joseph. Both organizations have been strong partners in encouraging innovative and sound programs for opening up the health and transportation systems of our community. Their financial and psychological support has been critical in any of our success.
Having a compassionate partnership network has made for a city-wide road map for improving health for our most neediest citizens. Each partner has brought a level of trust and openness to new ideas that has fueled our work. We have learned a lot from each partner and we are happy to strengthen our learning and support networks.
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
Read about the latest progress we are making as a Cancer Justice Network.