Poor Americans are forced to accept substandard health care services and endure assaults on their personal dignity when seeking cancer treatment, a report issued this week by the American Cancer Society has found. The document, “Cancer and the Poor: A Report to the Nation,” is the culmination of a series of fact finding hearings the society held in collaboration with NCI and the Centers for Disease Control in May and June.
At the hearings, about 70 economically disadvantaged people and 100 health professionals presented testimony concerning their personal experiences. More than 70 other individuals submitted written testimony at the hearings.
The report found that the five most critical issues related to cancer and the poor were:
- Poor people endure greater pain and suffering from cancer than other Americans, mainly due to late diagnosis.
- Poor people and their families must make extraordinary personal sacrifices to obtain and pay for care.
- Poor people face substantial obstacles in obtaining and using health insurance and often don’t seek care if they can’t pay for it. Less than 45 percent of those below the federal poverty level are eligible for Medicaid.
- Cancer education is insensitive and irrelevant to many poor people. There is a serious education gap in cancer prevention and detection for the poor.
- Fatalism about cancer is prevalent among the poor and prevents them from seeking care. Many believe that a diagnosis of cancer is a death sentence and that little can be done to help them.
“Based on the findings of this report, we need to declare a new kind of war on cancer—a guerilla war—that will tear down the economic and cultural barriers to early and adequate cancer prevention, diagnosis and treatment, and dramatically increase cancer survival rates for all Americans,” said ACS President Harold Freeman in releasing the report this week.
The society estimates that 178,000 people with cancer who might be saved through early diagnosis and treatment will die this year alone. The survival rate of cancer among poor people is 10 to 15 percent lower than other Americans, according to ACS.
ACS is sending the report to health policymakers, advocacy groups, professional societies, social service agencies and other organizations as a national “call to action.” Freeman urged local, state and national policymakers to address the issues in the report.
“Restricted access to health care is a devastating national problem that further impoverishes patients and their families, regardless of the disease involved,” Freeman said.
“On a daily basis, the conditions of poverty are all but impossible for many poor people to overcome. When a serious health problem is added to the equation, the problems become insurmountable.”
Freeman also emphasized that poverty should not be viewed as a problem of others. “The circle of poverty is not a closed circle. There are middle class people today who will become poor tomorrow. Let us see our own reflections in the faces of the poor,” he said.
Kathleen Horsch, chairman of the board of ACS, announced the society’s commitment to a three year demonstration project, designed to help develop and promote effective ways to address the cancer education, prevention and detection needs of the poor.
On Aug. 15, ACS will convene a task force of key national volunteers and staff leaders in Atlanta to review the hearings and the findings of the report, Horsch said. ACS will hold a national conf ercnce on cancer in the poor in September.
At the conference, the “action plan” devised by the task force will be presented to volunteers and staff leaders of the 57 ACS divisions and leaders of community service organizations and other health agencies. Then a final plan will be presented to the ACS Board of Directors for their approval in early November.
Starting in October, the society will provide $1.8 million in grants for three communities to develop and test program models that can be duplicated in other communities. It will be the first phase of the three year project. ACS is reviewing applications for projects in Harlem, Oakland, CA; and Miami.
Recently, ACS committed nearly $1 million to support local pilot education and research activities around the country that are targeted to the disadvantaged.
Horsch also outlined the society’s plans to get the report in the hands of people who can influence health care for the poor. HHS Assistant Secretary James Mason attended the press briefing. President Bush, Congressional leaders, HHS Secretary Louis Sullivan and key members of the White House domestic policy staff also will be receiving copies of the report.
The report lists 10 “challenges” the country will face in addressing the problems of the poor in seeking cancer education, prevention and treatment services:
- Assure that cancer prevention, detection, treatment and rehabilitation services are available and accessible to all who need them, regardless of the ability to pay.
- Improved cancer prevention and early detection among poor Americans to eliminate unnecessary pain, suffering and death.
- Undertake aggressive educational efforts to counteract fatalism, overcome fears and enable poor people to reduce cancer risk.
- Improve and expand public and private assistance for the poor, including health insurance.
- Develop cancer education materials and outreach programs which are culturally sensitive, understandable and relevant to poor people.
- Establish patient advocates and referral services to help poor patients navigate the health system and manage personal problems that result from cancer treatment.
- Involve community organizations serving the poor and poor people themselves in cancer education and patient advocacy programs.
- Train health care providers to be sensitive to the needs of poor patients and to better serve their needs.
- Expand availability of and accessibility to health services for poor people in rural areas that are now underserved.
- Conduct research to further document the scope of the problem and identify effective interventions.
The hearings that were the basis of the report were held in seven cities: Atlanta, GA; El Paso, TX; Jackson, MS; Newark, NJ; St. Louis, MO; Phoenix, AZ; and Sacramento, CA. A panel of ACS volunteers, representatives from NCI and CDC, and state and local policymakers questioned those testifying.
At the briefing announcing the report, two women representing the poor spoke about their experiences.
Barbara Johnstone, of Grand Junction, CO, had cancer that was originally misdiagnosed and she delayed seeking further treatment. She is uninsured and has had breast, bone and other cancers. She lost her job and home, and moved from her hometown to be near a treatment facility.
Cassandra Middleton, of John’s Island, SC, single with two children, had sought treatment for a leg ailment for months before she was finally diagnosed with osteosarcoma in 1985. A physician told her that her leg had to be amputated, but her family encouraged her to seek a second opinion. She was eventually admitted for treatment at NIH. She is unemployed.
Freeman said that at the hearings, the disadvantaged “described with passion the frustrations the poor experience in seeking and obtaining care, their lack of information and their battles with insensitive providers. They told of their struggles with bureaucracies where obstacles to care seemed to broaden the more they tried to understand the procedures involved.
“They talked about their fears about cancer, their hesitations about going for cancer screenings, and the devastating impact cancer had on them and their families,” Freeman said.
“ACS has been the public’s advocate for cancer control and we are committed to helping people who are at greatest risk of dying from cancer,” Horsch said. “That is why we believe it is our responsibility to raise attention to the problems disadvantaged persons face. The hearings provided a valuable snapshot of the problem and reinforced the urgency to move forward.
“ACS intends to make sure that the nearly 39 million Americans now living below the poverty level have the same opportunity to protect themselves against cancer as we do.”
NCI Director’s Statement
NCI Director Samuel Broder called the ACS report “a milestone” in the effort to prevent and control cancer.
NCI “shares the Society’s conviction and concern that poor people face a disproportionately increased risk of dying from cancer than do other Americans,” Broder said. “NCI staff who served as panel members (for the hearings) were struck both by the awesome challenges facing our traditional medical system and by the indomitable spirit of individuals trying to cope with their disease. The many hours of heartfelt testimony sharpened our sensitivity to the cancer control needs of poor people and rekindled our sense of urgency in helping.
“The Society•s report confirms and adds to the findings of our own public participation hearings sponsored by the National Cancer Advisory Board in 1987 and 1988. Among the NCAB’s key recommendations were achieving increased access to more affordable screening procedures and improving information programs for underserved populations, including the indigent and older Americans.
“I have set as an institute priority the reduction of cancer mortality rates among minorities and other underserved groups.
“The solution to providing adequate cancer prevention and treatment for our nation’s poor demands the commitment of both governmental and private organizations. Resolving the complex medical, economic and social issues of cancer in the midst of poverty will challenge the imagination and resources of all sectors in our society.
“NCI applauds this bold initiative of the ACS. We pledge our full support and cooperation in addressing the recommendations of the report,” Broder concluded.
The CDC “enthusiastically endorsed” the ACS report, said Assistant Surgeon General Jeffrey Kaplan, who is director of the Center for Chronic Disease Prevention and Health Promotion at the CDC.
“CDC’s insight and work have been enriched by the Society’s firsthand look into cancer among the poor,” Kaplan said. “We look forward to further cooperative efforts with the Society.”
