“You’ve said there are therapies that could cure an additional 100,000 patients a year.” C. Sagon.
“That’s a conservative number that the American Cancer Society has cited. It’s based on access to care, which can be uneven across this country. This does not necessarily mean access to new drugs, just getting everything that we already know works. That’s why I say, if you go to a doctor and he says you have cancer and he can do nothing for you, find another doctor.” V. DeVita, M.D. (1)
“Although blacks have suffered and died from cancer throughout the twentieth century, the images associated with cancer–particularly cancer awareness and prevention–had been for more than fifty years overwhelmingly of white Americans.” K. Wailoo (2)
- Introduction: Cancer screening and treatment has a troubled history and present, especially for minorities and the poor. Minorities, especially blacks, have rarely fit “scientific” definitions of being a person and having similar human characteristics as whites. (3) In fact, for many physicians, blacks were not seen as capable of having cancer as segregated practices reflected prejudiced attitudes.(4) As one historian of cancer has stated: “Public health itself was a segregated enterprise, and the health problem of “the Negro” have little resemblance to the health challenges of the well-to-do whites.(5) Even after a 1947 scientific study by the black medical school, Howard, showing poor cancer treatment of blacks and the resulting difference in outcomes, the acceptance of blacks with cancer was minimized.(6)
The history of cancer practices in Cincinnati has not yet been written. However, the latest statistics about cancer mortality for minorities show that same troubling pattern of less life expectancy for all types of cancer. (7) There is a shocking twenty-year difference in life when a citizen lives in a poor community. (8) Cancer deaths play an important role in this difference. (9) Cancer has not crossed the color line.
- How do you change a health system with such bad outcomes? In order to have a different outcome for minorities and the poor it is necessary to have a different approach to access. Without access to timely screening and treatment, cancer will unnecessarily kill minorities. Gaining access means a procedure that invites the patient to receive a screening, respects the fears of the patient about what could be a negative diagnosis, and offers a treatment that is effective and successful in stopping the cancer. (10) Access needs to start in the community with citizens learning about how they could best survive cancer by getting early screening. Right now, there is no hospital or social service agency that offers cancer education or a “road map” to rapid screening. Many citizens, minorities included, have little or no experience with the health system except through the emergency room. (11) The place to go for a screening is not the emergency room. But no hospital advertises just where the best location is within the hospital. Equally important, many citizens have little real idea about exactly what cancer is, how it grows, and why it appears in some people and not others. There is no general education about cancer, and especially the cancers that might most likely have serious, even deadly consequences. Minorities are bystanders about these important medical issues, too often waiting until it is too late to seek the necessary screening and treatment. (12)
- A major change program: Lay Patient Navigation: Harold Freeman, M.D, surgeon, former president of the American Cancer Society, and now director of the Ralph Lauren Center for Patient Navigation Training, has designed a major intervention that doubles life expectancy for minorities, the poor, and anyone with cancer. Freeman realized that his surgical skills could not be used when people came for treatment after their cancer has fully progressed. He devised a program of hiring community agents, “navigators,” training them in compassionate skills, and focused his efforts on getting citizens to screening and treatment at the earliest time in the development of their cancer. Over five years, he doubled the life of people with cancer by getting them to screening and treatment. (13) Freeman’s program has spread across all cancer programs and having a patient navigation process is now a requirement for certification for all cancer programs. (14)
Freeman was invited to a conference in April, 2015, to present to Cincinnati hospital and social service staff the methods and outcomes of his program. He was enthusiastically received. The program looked necessary for changing cancer education, cancer screening, and cancer practice. Cancer, Freeman thought the conference, could cross the color line and be successful.
- The Cancer Justice Network: No hospital based program has begun. Instead, a group of social service organizations have agreed to initiate a cancer education program at weekly dinners, food sharing at pantries, special meetings, and any way that cancer education can be offered. Physicians, led by Nemat Moussavian, M.D., will provide knowledge about how cancer works and how it can be survived. A group of volunteers from the University of Cincinnati’s school of social work and community volunteers will be trained to be the first “navigators.” They will meet with people at these dinners and meetings and, if needed, assist the person to an appointment with a Cincinnati Health Center. An appointment for screening will be made and the navigator will accompany the person to the screening, helping with transportation, childcare, and other obstacles to making the appointment. And, if needed, the navigator will assist in helping the person get rapid treatment.
A pilot program is being planned with Churches Active in Northside(CAIN), FreeStore Food Bank, Christ Church Cathedral, St. Francis Seraph, Madisonville Education and Assistance Center(MEAC), St. Vincent de Paul, Santa Maria Center, the school based clinics of the Cincinnati Health Department and the Cincinnati Public Schools. A navigator directory will also be created. A city wide calendar is being developed showing the dates and places for cancer education. Streetvibes, the biweekly newspaper of the Homeless Coalition, is planning to publish the calendar.
- The Goal: Reduce cancer deaths in a significant way: The Cancer Justice Network will create a learning and action system to promote early and timely screening and treatment using the Freeman navigation process. In time, we expect to see many more people coming for screenings of colon, prostate, breast, and uterine cancers, all cancers that can be caught early and survived. And, we expect to see a longer and better life expectancy for minorities and the poor in Cincinnati when cancer crosses the color line.
References: (1) C. Sagon (March 2016). “An End to Cancer? Vincent DeVita, M.D., discusses his memoir, The Death of Cancer.” AARP Bulletin, P. 24.; (2) K. Wailoo (2011). When cancer crossed the color line. Oxford. p. 2.; (3) Wailoo, p. 33.;) (4) Wailoo, pp. 3-4; (5. Wailoo, p. 35.); (6) (Wailoo, p. 143.; (7) Data: 2008-2012 Trend Period, State Cancer Profiles. National Cancer Institute, Center for Disease Control; (8) N. Maseru and C. Jones, M.D., “Why we die: Cincinnati Mortality Data Project. City of Cincinnati Health Department, 2011.; (9) Hamilton County Public Health. August 2014. “Does place matter? Health equity in Hamilton County. 2008-12 Trend Period. State Cancer Profiles, National Cancer Institute, Centers for Disease Control.; (10) H. Freeman (4/14/15). History and principles of patient navigation. Peace Village Patient Navigation Conference.; (11) H. Fader and C. Phillips. Frequent-user patients: reducing costs while making appropriate discharges. Health Finance Management. 2012 66(3):98-100.; ; L. Taylor et al., Leveraging the social determinants of health: What works?. June 2015. Yale Global Health Leadership Institute. p. 24. ;(12) S. Sunderland(September 2015). “Should your neighborhood affect your life expectancy?” The Northsider.; (13). H. Freeman and R. Rodriguez (8/1/2011) History of patient navigation program. Cancer.; (14) E. Paskett et al, “Impact of patient navigation on timely cancer care: The patient navigation research program. J Natl Cancer Inst. 2014 Jun; 106(6): dju 115.
*Steve Sunderland is director of the Peace Village Cancer Project. He can be reached firstname.lastname@example.org