From Steve Sunderland, PhD, Director, and Nemat Moussavian, MD, Medical Director, Robert Harris, DD, Cancer Justice Network
Dear Healthcare Leaders:
We want you to change your hospitals into “New Hospitals” of justice. Can you hear the voices of people who are dying because health care for people who are poor and minorities is so poor in our city. You must know the following:
* Minorities, seniors, people who are poor and with disabilities are dying in greater percentages from the COVID-19 virus than the rest of the population. CAN YOU HEAR US?
*People who are poor and live in certain city neighborhoods have 35 years less of life expectancy than other city neighborhoods. CAN YOU HEAR US?
*Seniors are in vulnerable health realities and have limited access to healthcare. CAN YOU HEAR US?
*People who are poor are more likely to die of cancer than any other population. Inadequate treatment and follow up have gone on without accountability. CAN YOU HEAR US?
*Infants continue to die at horrible high levels. CAN YOU HEAR US?
There is no program of outreach to work on these healthcare crisises from any hospital. Monies from the Hamilton County Indigent Care Levy have not been targeted to these problems. Politicians have not helped to reduce these health disparities.
What needs to be done by Healthcare Leadership? Create a “New Hospital.”
1. Each hospital needs an Equity Task Force that reports to the CEO on the programs and progress on these critical health care needs.
2. Each hospital needs an educational outreach program that partners with churches, community centers, senior centers, and school-based clinics with accountability for the numbers of people educated about critical health needs.
3. Each hospital needs a Community Based Navigator Program to insure the community that their health needs will be joined to community navigators that will accompany patients to the hospital.
4. Each hospital needs a free transportation process to assist patients in gaining access to timely treatments.
5. Each hospital needs training in being friendly, welcoming, and compassionate with patients and insuring that procedures to the hospital are clear, user friendly, and culturally sensitive.
Justice in healthcare can be provided if the above steps are implemented. The City’s high risk population no longer needs to be imprisoned by old notions of hospitals. Now is the time to listen, to review, and to act.
CAN YOU HEAR US?
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.”
Read about the latest progress we are making as a Cancer Justice Network.