BETHESDA, MdWhy don’t all Americans get the best available cancer care? Answers both tentative and diverse have emerged from the first four of seven regional hearings conducted by the President’s Cancer Panel (PCP). The hearings are intended to elicit testimony from people throughout the nation.
The first four hearings were held in Omaha, Nebraska; Burlington, Vermont; Billings, Montana; and Nashville, Tennessee. The remaining sites are Los Angeles and Albuquerque, with the final session scheduled for Bethesda, Maryland, in May. The PCP plans to deliver its report to President Bush in December.
"We have the objective of hearing from people in diverse communities throughout America, of all races and cultures, who have had troubles in obtaining health care and from providers who also have problems administering health care and cancer treatments," panel chairman Harold P. Freeman, MD, told the National Cancer Advisory Board.
The PCP has reached no firm conclusions as to why the gap in cancer care exists, said Dr. Freeman, an oncologic surgeon who is president and CEO of North General Hospital, New York. Dr. Freeman said. "We realize that the testimony is anecdotal. This is not high science, but if we can combine the science we have with the testimony of real people with real problems, we can, perhaps, understand these problems better."
The PCP chairman broke down the barriers to care described by witnesses at the hearings into five areas:
A major factor in cancer care is a lack of insurance or too little insurance, he said, noting that the United States is the only developed country besides South Africa that does not have universal access to health care. "We have 43 million uninsured Americans and 60 million underinsured," Dr. Freeman said.
Fear of debt and worries about not being able to provide for a family’s basic needs may cause some cancer patients to forego treatment. "We have heard testimony from many people who have been bankrupted by their cancer treatment or put into thousands and thousands of dollars of debt," Dr. Freeman said. "It was suggested that not the very poor, but those living just a little bit above that are the most easily wiped out financially by the diagnosis of cancer."
Moreover, the complexity and variations in health care coverage among both government and nongovernment insurers contributes greatly to determining the quality of treatment that the insured receive.
Information and knowledge
This topic cuts deeply both ways. The old notion that the young don’t get cancer appears still embedded in the minds of some physicians. "We have heard testimony that providers will put off the diagnosis of cancer because they believe [the patient is] too young," Dr. Freeman said.
Across the nation, "relatively few providers have the research background that would lead them to put patients into clinical trials," he said, and worse, "there is a mistrust by certain physicians in the country of referring patients to the clinical trials system." Finally, most physicians have insufficient knowledge about the needs of terminal cancer patients.
Patients often lack access to information and have a poor understanding of the information that they get. This can be far more than a lack of Internet access. Some people still have no telephone service; the nearest library may lie beyond reasonable travel; scientific terms baffle many; more than 100 languages are now spoken in the United States; and a significant number of people living in this country are illiterate in the language they speak.
With the increasing cultural diversity of the nation, physicians find themselves treating patients who have varying mythologies about cancer. "Native Americans and Asians often want to keep the disease secret," Dr. Freeman said. "Some Native American people believe that if you talk about cancer, you will bring it on your entire family, and we found that some Asian cultures believe that cancer is communicable."
Often health care providers fail to recognize cultural traditions that reflect spiritual values; for instance, hospitals will often bar traditional healers. "People sometimes quit their treatment because they want their medicine man to be brought into the discussion," Dr. Freeman said. "Women of the Native American and Latin cultures often object to being examined by male doctors."
Many people only want to see a doctor of their own culture, and others want to die at home in traditional ways, both of which may bring them into conflict with the US health care system.
And there is within cultures considerable distrust of physicians and other health care professionals. Reasons vary. Native American object because they often never see the same provider twice.
The unethical Tuskegee syphilis experiments involving black males remains a strong force behind the distrust of many blacks, and Hispanics remember the forced sterilization of Puerto Rican women. "We have to take the cultural issues very seriously if we are to move forward," he said.
Dr. Freeman focused on the problems of transportation in getting patients to cancer therapy. About 25% of Americans live in rural or remote areas, he noted. Half the counties in Montana are designated as "frontier," which means they have a population of three or fewer people per square mile. "People have to rely on others to drive them 100, even 300 miles. People in the Virgin Islands and Puerto Rico may have to take an airplane to get treatment," he said.
Among the interesting topics in this category are the need for a greater emphasis on cancer prevention and concern that model or pilot projects are started in a community and then disappear. "This has come up in almost every place we have been so far: that there is a lack of sustainability of local programs," Dr. Freeman said. Moreover, local health departments rely heavily on Washington and do little to initiate cancer programs on their own.