Bridges to Access and Cancer Justice

Bridges to Access and Cancer Justice

by Steve Sunderland, PhD and Sharon Doering
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CONSIDER THE FOLLOWING:

“…differentiated access and treatments defined the line between survival and death.”

“Fewer and fewer large and medium sized companies offer their workers full health coverage-74 percent did in 1980; under 10 percent do today.” 

“The experiences of minorities remain strikingly marginal in cancer literature…” 

“Not only are we in need of new and more effective therapies, but we need a health system that reliably delivers such therapies, particularly to underserved and poor populations.”

  1. Introduction: What these astonishing facts illustrate, is the lack of access minorities and low income people have to cancer information, timely screenings, treatment, and care, and help in navigating the maze of their cancer journey. Cincinnati must provide a bridge of access for its poor and minority population to navigate away from such devastating discrepancies in cancer outcomes.
  2. Access to timely cancer information: Minorities and other underserved populations are denied access to the information that they may have cancer. Health and educational systems have ill prepared this population to ask the critical question: what is cancer? Not having the opportunity to ask a physician or nurse for the warning signs of cancer has contributed to the mortality of minorities and the poor. In Cincinnati this population has the highest death rate from cancer in Ohio. When people, poorly educated about health matters, finally find out they have cancer, it is often too late for successful treatment. The latest drugs and other treatments are unable to be used as the cancer has advanced to an untreatable stage. Changing death rates depends on providing a bridge between the citizen and information about cancer survival based on early screening and treatment.
  3. Access to timely screening and treatment information: Communication about cancer requires a sensitivity to people’s fears about death and pain as well as an appreciation of the person’s prior experience with cancer in their family or with friends. Misinformation about the nature of cancer and confusion about screenings as well as fears of treatments can distort accurate understanding. The key to heightening comprehension may be in providing cancer education in social agencies that are trusted. Already a firm foundation, the social service agency can be the most important bridge to both education and rapid movement to screenings. The opportunity of community educators, some with personal experiences of surviving cancer, can make the connection to understanding that will be best understood.
  4. Access to navigating the health care maze: The creation of the patient navigator role by Harold Freeman, M.D., surgeon and former president of the American Cancer Society, recognized that true access to necessary cancer treatment may require a trained and trusted person who will accompany a person through the barriers that too often block action. Navigators understand the transportation system to the screening and hospitals. Navigators understand how easily a person can be slowed or stopped by confusing communication between doctors and patients, especially when fears about cancer are present. Navigators can also help with financial and family logistical issues. In sum, the navigator is a vital part of the bridge to survival as a trusted companion on the journey.
  5. Creating a caring bridge: Moving through phases of uncertainty in the discovery process for cancer requires great resilience on the part of the person with cancer and their loved ones. Too often the experience shatters self-confidence as the fears of failure overwhelm the experience. One family member described this crisis: “I wish that some, anyone-any of these people who are paid to do this-would actually tell me what to do…I have not yet opened my mouth and I am defeated…I need tactics: a manager, coach, a trainer who knows about the death stuff…about the understanding of young children, about the deep fatigue generated by stress, about what the illness does to concentration, financial support, about anger…and all the skeins involved in the [un]raveling out of the whole.”  The navigator will assist in working with realistic needs of the patient and their family and assist in encouraging the patient to find some degree of peace within the experience of doubt and fear.
  6. Navigation with the Cancer Justice Network is the bridge: Social service agencies provide important, indeed, critical provisions for people in need. Whether it be food, help with housing assistance, emergency funds for transportation and bill paying, occupational training, and/or clothing, social service agencies are major sources of relief, strength, and compassion for many people in our community. The Cancer Justice Network builds on these strengths, unites the community desire to decrease cancer mortalities, and provides direct links to people who may likely fall through the cancer cracks. By providing cancer education and individuals trained to navigate the cancer maze through agencies in the Cancer Justice Network in Cincinnati, a bridge to survival from cancer emerges. In the coming year, our education and navigation option will be offered at the FreeStore Food Bank, St. Vincent de Paul, Madisonville Education and Assistance Center, Caracole House, Churches Active in Northside, Christ Church Cathedral, St. Francis Seraph and the Homeless Coalition. We expect navigators to come from the community as well as the University of Cincinnati school of social work, the UC Cincinnati Project, and the UC Peace Village. The American Cancer Society will provide printed cancer information, assistance with transportation to and from centers and hospitals, and critical 800 numbers that may be used 24/7 for people to access information. The Cincinnati Health Department will coordinate their health centers’ schedules to assist in screening processes. A team of volunteer physicians, led by Nemat Moussaivian, MD, will provide information on how cancer can be overcome with early screening and treatment. Support for these activities is provided, in part, by grants from the Cincinnati Academy of Medicine and Molina Insurance.
  7. A Bridge to Improving Survival from Cancer: Research on navigation programs in other cities and states shows success in reducing mortality and improving screening due to assistance in overcoming obstacles. Cincinnati could be a national leader in the transformation of social service agencies into new organizations that prevent the expansion of cancer stages and assist in successful treatment options. Changing the mortality epidemic in Cincinnati requires a new and bold approach that reaches outside the hospital and to the community, especially to those agencies that have a foundation of compassion. The message for the 21st Century is that this new approach of navigation following cancer education can make a major difference in the survival of low income people and minorities. The bridge to caring treatment is being built with the hands of strong partners.

* Steve Sunderland is director of the Peace Village Cancer Project (steve.c.sunderland@icloud.com) and Sharon Doering is the secretary of the board of the Peace Village Cancer Project.

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