WASHINGTON, DC—At a time when racial and ethnic minority groups in the United States are growing rapidly, the Intercultural Cancer Council (ICC) has issued a challenge report calling on Congress and the Bush administration to improve cancer diagnosis and care for US ethnic and racial minorities, and for the poor—those the ICC terms “invisible people.”
The new report, “From Awareness to Action: A Renewed Call to Eliminate the Unequal Burden of Cancer,” was released at a news briefing here during the ICC's 11th Biennial Symposium on Minorities, the Medically Underserved & Cancer. Included are 12 policy goals for action set forth by the ICC (see box), including achieving universal health insurance by 2010.
“Many Americans are invisible when it comes to the war on cancer,” Lovell A. Jones, PhD, Director of the Center for Research on Minority Health at the University of Texas M. D. Anderson Cancer Center, said in introducing the report.
“Disparities in cancer care have reached crisis proportions. Our message is clear: It is time to elevate disparities in cancer care as a national priority. If we don't, the consequences are unimaginable.”
If current population trends continue, the report notes, nearly one in two Americans will be a member of a racial or ethnic minority by 2050, and thus the potential exists for widening the gaps in cancer care—gaps that are manifested in higher smoking rates, lack of screenings, and late diagnoses among the medically underserved.
On the national stage, “I think health has always taken a back seat,” said Dr. Jones, a co-founder and past chairman of the ICC.
No Particular Candidate
Asked by OT if the ICC is backing any one Presidential candidate in its efforts to lower the cancer burden borne by the underserved, Dr. Jones said no: “We're trying to get all of them to move past where they are.” What the ICC wants the three candidates to understand, he said, is how intimately the nation's economic health is tied to the health of its workers: “You can't have economic growth without health.”
In 2004, the ICC issued its first major report on the unequal burden of cancer, and this latest report has concluded that very little has changed since then. The ICC report cites a similarly alarming report from the President's Cancer Panel in 2002, “Voices of a Broken System: Real People, Real Problems,” in which the Panel's Chairman, Harold Freeman, MD, President and Medical Director of the Ralph Lauren Center for Cancer Care and Prevention and an OT Editorial Board member, documented the untenable burden of cancer on underserved Americans.
Dr. Jones noted that invisible underserved Americans are not included in recent statistics showing that cancer death rates are declining on average at about 2.1% per year. There are poorer cancer survival rates for blacks compared with whites (53% for blacks vs 64% for whites), Pacific Islanders, and poor rural whites in three Appalachian counties (where breast cancer mortality rates were more than 33% higher than for any other US ethnic minority group between 1999–2003).
Under-Recognized Crisis of Cancer in Pacific Islanders & Native Hawaiians
The cancer burden on Pacific Islanders and Native Hawaiians is an under-recognized crisis, said Neal A. Palafox, MD, MPH, Professor and Chair of the Department of Family Medicine and Community Health at Johns A. Burns School of Medicine at the University of Hawaii. “The call is that the US government embrace Pacific Islanders as one of their own,” he said, noting that 95% of Pacific Islanders live below US poverty rates; that some are at higher risk of cancer because they live near sites of previous US nuclear testing, such as the Marshall Islands; that Medicare is inadequate in some island regional areas; that mammograms are not available in certain areas; and that Pap testing—if available—is done with outdated technology.
The ICC report notes that Native Hawaiians had the second highest overall rate of cancer and the highest age-adjusted cancer death rates in Hawaii when compared with other ethnic groups between 1988 and 1992. Native Hawaiians have the highest death rates for stomach cancer in the United States; for Native Hawaiian men, death rates between 1976 and 1990 increased 62% for all cancers, while for Native Hawaiian women death rates increased 123% for all cancers during that time period.
American Indians and Alaska Natives are among the poorest groups in the United States, which the ICC report found is a major factor in their lower survival rates when they are diagnosed with cancer. “The Indian Health Service is very underfunded,” said Celeste White Wolf, a breast cancer survivor who spoke in American Indian tribal dress. The United States spends less per capita on Indian health than it does on health in the federal prison system, she noted.
And Jennie R. Cook, President of the ICC Caucus and a former Chairman of the Board of the American Cancer Society, stressed that in its new call to action the ICC is not saying the United States has made no progress at all in addressing cancer care for ethnic minorities and the poor: “It would be inaccurate and unfair to say that no progress has been made over the last 20 years,” she said, citing in particular the National Breast and Cervical Cancer Early Detection Program (NBCCEDP) of the US Centers for Disease Control and Prevention.
But, said Ms. Cook, too often what happens is that well-intentioned programs start and then stop, or are passed into law but not funded or inadequately funded. “What is not happening is the commitment to effect real change,” she said, noting that with this commitment the ICC believes that reducing cancer disparities is possible.
“We are realists. We are calling on Congress and the administrations to take our recommendations seriously.”
ICC's Agenda for Action
The following are the Intercultural Cancer Council's 12 “policy goals for action”:
1. Fully implement and fund recommendations of the Trans-Department of Health and Human Services Cancer Health Disparities Progress Review Group, which in 2004 listed 14 priority recommendations for HHS to take the lead in eliminating the unequal burden of cancer.
2. Fully fund the Patient Navigator, Outreach and Chronic Disease Prevention Act of 2005, which helps patients—regardless of race, ethnicity, language, or geography—gain access to prevention, screening, and treatment. This act was signed into law with strong bipartisan Congressional support, but not funded.
3. Enhance the collection of data on racial and ethnic minorities, such as expanding the Surveillance, Epidemiology, and End Results (SEER) program of the National Cancer Institute to include underrepresented populations with differential cancer rates.
4. Increase federal funding for government programs that provide greater access to cancer screening programs, such as the National Breast and Cervical Cancer Early Detection Program.
5. Acknowledge and then redress and monitor institutionalized racism as a major factor in the “miscarriage of health justice” leading to the unequal burden of cancer.
6. Make tobacco control a priority, backed by new federal and state initiatives specifically targeted to minorities and the underserved.
7. Eliminate barriers to more effective pain management and palliative care for the medically underserved.
8. Increase the level of knowledge about cancer survivorship among the medically underserved.
9. Restore Medicare reimbursement for cancer treatment and cancer care in all settings in 2008.
10. Immediately implement and increase funding for the Medicare demonstration project providing access to oral chemotherapy drugs.
11. Enact the Patients' Bill of Rights to provide protection to all cancer patients in managed care plans.
12. Achieve universal health insurance and establish a schedule to reach this goal by 2010.